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File: 1503622366282.jpg (32.74 KB, 600x315, IMG_7398.JPG)

No. 379077

Over-The-Top Spoonies/Munchausen By Internet Attention Whores General #9
Previous Thread: >>>/snow/372040

Discuss people who feign or exaggerate chronic illnesses and medical crises for attention and asspats online. Previous topic focused primarily on Instagram accounts, but posts from blogs and other social media sites are admissible.

Most recent active IG cows:
Eli, aka folie_a_you
kelly.ronahan; me_and_the_mr (has her own thread >>359452 ).
hypermobileguy
chronically_jacquie
MyBlondeVoyage
onemorestep2
endlessvoices

The Munchie Queen of all time is Robyn Brown, who has her own threads (original: >>197138 ). Sadly she is now incognito.

What Is A "Spoonie"?
People who identify as 'Spoonies' are referencing 'The Spoon Theory,' written by a woman with lupus to explain the chronic illness experience to a healthy friend who asked her what it really feels like to live with her medical problems.
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
The 'Spoonie' Community is, in general, a legitimate supportive network for people dealing with chronic illness. In recent years, however, it has become polluted with SJW types and has attracted a new breed of attention-seeking catfish: people who lie about, fake having, and/or exaggerate existing medical problems and crises for no benefit other than to garner attention.

What Is Munchausen By Internet (MBI)?
From Dr. Marc Feldman, an expert in factitious disorders including Munchausen Syndrome, first described Munchausen By Internet in 2000:
"…the advent of online support groups, combined with access to vast stores of medical information, enabled individuals seeking to gain sympathy by relating a series of harrowing medical or psychological problems that defy comprehension to misuse the groups.[1] Communication forums specializing in medical or psychological recovery were established to give lay users support in navigating often confusing and frustrating medical processes and bureaucracy. Communities often formed on those forums, with the goal of sharing information to help other members. Medical websites also became common, giving lay users access to literature in a way that was accessible to those without specific medical training. As Internet communication grew in popularity, users began to forgo the doctors and hospitals often consulted for medical advice. Frequenting virtual communities that have experience with a medical problem, Feldman notes, is easier than going through the physical pain or illness that would be necessary before visiting a doctor to get the attention sought. By pretending to be gravely ill, Internet users can gain sympathy from a group whose sole reason for existence is support. Health care professionals, with their limited time, greater medical knowledge, and tendency to be more skeptical in their diagnoses, may be less likely to provide that support."

LINKS to articles and info on MBI:
https://www.munchausen.com (Dr. Feldman's website)
https://www.thestranger.com/seattle/the-lying-disease/Content?oid=15337239
https://www.abc.net.au/news/health/munchausen-by-internet-what-drives-people-to-fake-an-illness/7631990
https://www.theguardian.com/society/2015/apr/29/jules-gibson-munchausen-by-internet-sickness-bloggers-fake-it-whole-pantry
https://en.wikipedia.org/wiki/Munchausen_by_Internet#Characteristics

No. 379110

tbh i dont think robyn is the queen anymore.I think Carmel might have stolen that title

No. 379111

>>379110
She'll have to fight jaquie for the title, jaquie' munchy enough to have lied her way to a port,wheelchair, service dog, and feeding tube.

No. 379112

>>379111
Seconded, her bloaty highness is getting pretty out of hand compared to your average munchie

No. 379114

>>379111

What's next for her? My money's on oxygen.

No. 379136

Have to agree with everyone else Robyn isn't queen anymore Carmel or Jacquie are both more fit to be queen munchie

No. 379141

>>379136
jonzie could be a contender too but she's too busy playing the xylophone

No. 379144

>>379136
carmel won't be able to get all the toys jackie has, because she's in australia, she'll have to settle for munchie princess

No. 379168

>>379136
HAHA jonzie can be their jester

No. 379187

Jonzie is definitely queen but I actually think she's very mentally ill. Nobody can do what she does and not be seriously psychiatrically fucked up.

No. 379193

File: 1503631851982.png (1009.04 KB, 750x1334, IMG_5165.PNG)

Speaking of Jonzie….

No. 379200

>>379193
She doesn't have gastroparesis kek.

No. 379203

>>379110
Fuck no, not until they are deliberately ripping wounds open and pouring chemicals on themselves and documenting every day of the healing, moan abut how they are dying from it, whining about other clearly self-induced injuries, they are NOT Robyn-tier. Seriously read her threads. She is all of this and more.

No. 379206

>>379136
Have you even read Robyn's threads? Check out the Appendectomy Saga and Chemical Burn Saga. Bitch be cray.

No. 379213

>>379206
It's not just about what they do but the behavior. Jaquie and Carmel are both ebeggars and huge attention seekers.

We should crown one in each country. Jaquie in America, Carmel Australia, Chloe Leanne in England, the creepy anorexic twins in wherever they're from. Which accounts are Canadian?

No. 379216

>>379193

I know this is actually a picture of her because it has that silly dingy soccer blanket she drags around all the time.
But why do her photos always look so staged? Who takes these pictures for her? Someone must be with her - how do they stand her crazy child antics?
Also - the who look at my super distended belly, which doesn't look distended in the picture - not unexpected from an anachan

Did she say what the results of her recent tests were or is she keeping hush about it and still pretending she has super severe GP even when the former tests said no.

No. 379219

>>379213
Kelly is in Canada!

No. 379220

>>379213
Oh I am aware fam. Still think Robyn takes the cake on munchie attitude and antics. Her threads are a wild ride. She takes the English crown for sure.

No. 379251

File: 1503637881881.png (2.67 MB, 1440x2960, Screenshot_20170824-111532.png)

I don't know enough about POTS but aren't there other ways of getting salt/sodium besides eating something that will trigger a gluten sensitivity? This girl complains constantly of her digestive issues (gluten and dairy sensitivity and IBS constipation) but refuses to try to eat better because she's "picky"..or lazy.

No. 379298

File: 1503642885755.png (221.97 KB, 671x876, Screenshot_2017-08-24-23-26-12…)

"She is on suicide watch and has a mental health nurse come round several times a week. I am about to file an official complaint and contact my MP. If anything happens to her between now and when the form arrives there will be consequences!"

No. 379313

>>379298

I've worked in mental health in the UK and she's not on "suicide watch" at home but nice exaggeration.

No. 379340

>>379298

Hasn't she just been on a holiday in a caravan?

No. 379341

>>379298

What level of f'd up do you have to be to be able to cogently Instagram your FIERCE SPOONIE BATTLE UWU but need your mum to sort your financials?

No. 379342

>>379213

You forgot rheuma_esgibtkeinzujung in Germany ;)

No. 379347

File: 1503653986697.jpg (883.42 KB, 726x900, seriously2.jpg)

Some parts are missing, because she deleted this. Her account wasn't locked before this was posted, which is really weird.

Person asked rheuma_esgibtkeinzujung if she has any plans once her illnesses are under control and what kind of treament she gets for her endo besides the 3-month-injection.
Rheuma get's really angry and says that you can't cure her illnesses and that she can only take painkillers. For her endo she might get surgery soon and that the injection prevents more growths.
Person says that she doesn't mean that Rheuma should go to work and asks for her hobbies again.
Rheuma get's really defensive and points out that Person only has to look through her feed to find photos of her hobbies. And that she tries to give her best and that she really wants to work.

Rheuma takes Buscopan for her Endo several times a week and since april she has her period non-stop. Something is really fishy and I doubt that a doctor would tolerate this.

No screenshots, but first she wrote her teeth are cracked. After that there are only cavitiy spots and after she saw the dentist her teeth are totally fine, because she's good at brushing them. Where are the cracks?

>>379342
She is from Austria :D Do we even have a cow from Germany yet?
I wanna "nominate Nervenkriegerin-Schicksal Nervenschmerzen-Harter Kampf und leise Hoffnung" from Swiss. Maybe I will post some screenshots soon. She makes me cringe so hard

No. 379349

>>379347
Nice "hobbies".
What does she mean with packages for children?

No. 379350

File: 1503654914947.png (81.65 KB, 750x377, IMG_4013.PNG)

Munchy Origin Story: Carmel edition
- Mum and Dad love little Carmel very much
- One day Mum and Dad foster a kid who is in the care system and shower this kid with love and attention to try and make the whole ordeal a tiny bit better
-As multiple foster kids pass through their household, little Carmel becomes bitter and resentful towards these children. 'PAY ATTENTION TO ME!' she would cry, 'IM RIGHT HERE!'. Then little Carmel had a lightbulb moment-
>All the attention and love was going to these broken children from broken homes… so in order to regain the love of Mum and Dad she must be more broken than ALL OF THEM
- And so, an eating disordered munchy was born.

Also number 9 made me throw up in my mouth a little bit. No Carmel, youre not an empath, you have a PD.

sage for wild speculation and general armchair psychology (although i am a psych medfag so)

No. 379353

>>379349
She sends them crochet animals/hats and cheap stuff like pencils or note books, so nothing special.
She picked up most of her hobbies like crocheting, playing guitar, taking photos and drawing after a doctor diagnosed RA. Nice "hobbies" to make the pain really bad.

No. 379356

>>379353
like those ruddy Be Kind To One Another boxes that mostly went to munchies bc they had more followers and gained cass more attention than the actual sick people who keep their health and their social media separate/private?

No. 379359

>>379350

I posted screenshots in a previous thread but both her parents have health problems and her current foster sister has, I think, autism or similar. Basically, this is "normal" in Carmel's world.

No. 379360

>>379251
Yeah it's called sprinkling salt on your meals

No. 379362

>>379356
hers are not that fancy and they only contain 2-4 items. Some of the recipients have a page and they don't have a lot of followers. There aren't any munchies in Austria or Germany with a lot of followers besides her I guess? Only Nervenkriegerin from Swiss has a lot of followers and they keep commenting on each other pages or pages from actual sick children. It's really sickening what they're doing and I feel really bad for all the people who believe them.

No. 379364

>>379362
The obsession with ill children makes me really uncomfortable.
It's obvious that they don't want to grow up.

No. 379365

>>379364
They don't seem as bad as BlanketHugs, Mckenna started out sending blankets to kids and teens with any chronic illness, which was a nice idea, a 'pick me up' and a comfort for sick people of most ages and illnesses. Then she got obsessed with kids with CHD and Cancer, and only sends to them, prefers to meet them and take a million photos with them, she's obsessed with both conditions and kids with both conditions, it's very very disturbing.

No. 379387

File: 1503664662145.jpg (330.79 KB, 376x423, nervenkriegerin.jpg)

Her name on facebook is "Nervenschmerzen". She claims to have Asperger and she worked as a nurse before getting sick. Posts are extremely long and she makes no sense. Her favorite hobbies are running her groups(all pain related), commenting on other facebook pages(from people, who are actually sick) or trying to get followers. Nervenkriegerin means nerve pain warrior and the full name of her page is "Nerve pain warrior - hard fight and quiet hope".

Normal pain levels? Between 8-10 and she takes 32 medications. She has unbearable nerve pain in her whole leg, strong shoulder and back pain, scar pain at her butt(they removed a nerve stimulator), chronic stomach pain and her gut is bleedling. After she received a nerve blockade she was able to go on vacation and go swimming. Without blockades she doesn't sleep, so it's rather strange that she's able to post long blog entries and go on vacation. She's also able to leave the house even without blockades. And she's even able to tolerate bumpy grounds like the beach, fields in her wheelchair, while being in so much pain. What a great warrior!

No. 379400

>>379350

Actually, a lot of people absolutely lacking empathy are convinced they're major empaths, and they need to shield themselves from 'feeling too much', so they care even less about other humans, and on and on the circle goes.

No. 379411

>>379362

The German system is AWESOME at isolating Munchies and not indulging them. I've spent 18 months working at a German GI unit (large university hospital in a relatively small university town) 2 years ago. For GP, there's an almost militant tendency to use GNSs and treat them as a sort of therapeutic-diagnostic trial, even: if the trial stimulator fails to improve at the very least the nausea symptoms by about half of what we'd expect (= the definition of stim trial failure), you get another chance at readjusting the trial stim leads, but thereafter they basically rule out GP and you might expect a visit from the psychiatric unit very, very soon. Especially if you're female and especially if it looks like you're psychiatrically interesting. Tubing for GP basically doesn't happen. Germans have bred the continental paternalistic medical attitude to a point of absolute excellence - German docs, especially senior level (Oberarzt/Chefarzt), tell patients what to do, none of that co-decision or even following the patient's wishes. That happens only where the patient can have legitimate preferences (e.g. refusing treatment, which is a right by law, whereas one treatment vs another is not). And least of all do weeks and weeks of inpatient therapy for no good reason happen - there's a department of the German state insurance called MDK who do routine investigations and check whether any patients who could have been discharged are still inpatient. There are heavy penalties for hospitals who keep patients who could be treated as outpatients still on the wards.

There are excellent multidisciplinary pain clinics there, and you'd almost definitely be seen by one before you could Munchie your way to any permanent plumbing in your intestines. They would do a psychosocial, which would immediately filter out some of the worst Munchies. I haven't heard the mention of FII a single time in Germany, but it was clear that someone who came in with an intestinal issue and ended up discharged as a psych outpatient with at best cursory GI oversight was either somatising/had conversion disorder, or otherwise was sent to a PD clinic.

I am not sure I'd be comfortable practising in the German system, and I like seeing my patients (most of whom are NOT Munchies and many of whom have very serious, sometimes life-threatening conditions and need to make Big Fucking Decisions - do I want another GI surgery or palliative care? do I want a Whipple? should an IV drug addict get the insanely expensive new Hep C drug knowing that he'll be likely reinfected before Christm… strike that, Halloween?) as partners in their care. But they sure do keep Munchies contained!

No. 379412

>>379364

I don't want to grow up, either, so once a week, after my shift digging in people's guts, I go and play DnD with a bunch of dorky fucks like me. The point being, there are constructive, err, or, I mean, at the very least not destructive ways of not wanting to grow up, and to an extent - sorry if this is harsh - I blame the parents on raising such fuckups. I have not encountered a single Munchie suspect where parents weren't some shape of fuckups. Virtually every Munchie I've ever suspected came from a single parent, divorce or a new blended family where she suddenly had to compete for scarce resources (attention), and how better to do that than to fire up Mom's oldest instinct - caring for her young to ensure their survival?

It's clear these people desire the role of being cared for. The question is, how can this best be provided to them. I don't even know if therapeutic interventions wouldn't create a sort of dependence on the therapist (mind you, I know fuck all about therapy save some personal experience with it).

No. 379429

>>379411
Germans are sensitized because Baron von Münchhausen were actually german. And now they make sure to treat every patiant like they are his descendents.
I advocate the anti-munchie agenda here in germany, but sometimes they exaggerate it.

No. 379457

>>379412
What's clear to me is these people desire attention predominantly along with demanding compassion and empathy, personally I've found that they can actively dislike the people caring for them, it's a very strange dynamic, maybe because most are aware that whatever they're presenting with doesn't actually exist and they're always an appointment away from being discredited, FDIS in its true form in incredibly rare and we're fast becoming tumbler influenced society , growing up is overrated and mostly unachievable, maturity is a whole nother story though.

No. 379467

File: 1503677432593.jpg (577.1 KB, 1080x1830, Screenshot_20170825-110908.jpg)

She's going to get it even if Daddy has to pay out of pocket for it.

No. 379470

File: 1503677489295.png (7.75 KB, 293x190, aubreyl.png)

time to see another doctor because the old one wont agree with her.

No. 379472

>tfw you watched a doc called Mommy Dead and Dearest
>about Munchhausen by Proxy
>girl has feeding tube when she doesnt need it

ugh so gross that people who are perfectly healthy are thirsting after one.

No. 379473

>>379077
>>379467
She look so happy… it's so sad
most people would dread relying so much on a wheelchair…
AND IT'S GONNA BE PINK! PERFECT ACCESORY
omg… poor woman

No. 379486

>>379473
So unfair on the people who have pink chairs (I know a couple) and genuinely need them, as they're going to be associated with ridiculous grasping munchies like Jaq.

No. 379492

>>379387
What is the source of the nerve problems in her leg? Is it a pinch, a tear or what? I live with chronic nerve pain and can't work because of it… what kind of fucking nerve blockage does that magic? I've never experienced any medicine that is that affective with nerve pain, best I've had is gabapentin but who knows, maybe my doctors are being lax somewhere. I do call bullshit on her because when your nerve pain anywhere above 4-5 flares up you're too pre-occupied and can't think of anything else. I've had other types of pain, but nerve pain is by far the worst I've ever experienced. I don't knows, she's the first munchie to catch my attention enough that I want answers from her. Sage for blogpost.

>>379411
Does Germany have any procedures to weed out nerve pain munchies?

No. 379493

File: 1503681299191.png (192.64 KB, 1080x1176, Screenshot_20170825-181353_01.…)

This popped up as a 'new to Instagram' account on my feed today. Anyone got access to it?

No. 379496

>>379467

Her shit-eating grin makes me nauseous. And wtf is she doing with her tongue here?
I'm surprised she isn't dangling that stupid cath line over the blanket too.

No. 379500

>>379470

"Naturopath"?! Lol

No. 379501

File: 1503682212367.png (296.28 KB, 1536x2048, IMG_3060.PNG)

Carmel is magically getting better.
Pic 1/2

No. 379502

File: 1503682224952.png (285.66 KB, 1536x2048, IMG_3061.PNG)

>>379501
Pic 2/2

No. 379503

>>379467
Had to lol at today's blog when she stated she's an "extreme fall risk" because she falls all the time at home when she's alone…how convenient that everyone has to take her word for that.

No. 379504

>>379503

I do falls risk assessments all the damn time. She's talking utter crap.

No. 379508

File: 1503682530646.png (194.13 KB, 640x956, IMG_0581.PNG)

her POTS is sooper bad guys but she was doing flips the other day kek

No. 379509

>>379501
Why in the fuck does she need general anesthesia for an IUD?!

No. 379510

>>379509

"Muh EDS means local/sedation doesn't work."

No. 379511

>>379500
yea that takes any doctor cred and throws it right out the window lol

>>379501
your ed is showing carmel. its ok to admit that after two months of starving yourself on purpose that you actually want to eat.
has she said why she needed the bone density scan? she blocked me.

No. 379520

File: 1503684427473.png (475.69 KB, 750x1334, IMG_6269.PNG)

>>379493

Looks like there is a new YouTube channel too. Won't be able to peek at them for a few hours but curious if she mentions the tests.

No. 379530

>>379510
next thing she'll be claiming vEDS because that's the main one that doesn't do great with local (it can still be used just in a slightly higher dose)

No. 379548

Jacquie went from eye slit crashing to Erma Gherd so excited and bubbly and giddy over this new wheelchair. She is getting a power assisted chair that can be controlled her phone. Seriously???? Talk about wasted resources/life. I can't even wrap my mind about what she'll "need" next after the excitement for this new toy wears off.

No. 379553

>>379520
she does, in her latest video she said tomorrow shes headed to start her 'temple adventure' and that monday shes going for a manometry and a test for ph levels. shes going to be super excited to have a tube in her face again.

but of course despite horrible gp she ate pizza, but it was totally because she was with her cousins and they had a party and they were excited about it. -eyeroll-

No. 379554

>>379548

She doesn't even walk with a limp or in any way that suggests she needs a wheelchair.

If it's for her sooper serious POTS, then she's been seriously misadvised. The worst thing to do for POTS is to sit in a chair, you need to keep as active as possible.

No. 379555

File: 1503688557393.png (379.45 KB, 720x1280, Screenshot_2017-08-25-14-13-23…)

Ok Jacquie

No. 379556

>>379554
The way I have understood her repetitive over-explanation of All The Things is that it is for her sooper serious POTS combined with EDS. It's just too dangerous for her to stand for more than 20 minutes or walk - from what I can tell - more than 10 steps without "muh syncope" kicking in.

No. 379557

File: 1503688616341.png (696.42 KB, 750x1334, IMG_5167.PNG)

I really want to know who is taking these pictures

No. 379558

File: 1503688631799.png (921.49 KB, 750x1334, IMG_5166.PNG)


No. 379560

>>379555
Wowwwwwwwwwwwwwwwwwwwwww. Bitch who eats fast food and mechie's and an endless supply of crap, who regularly receives other mail can't have a PO Box because of her immune system? Who does she think she is kidding? How stupid does she think people are? I know!!! Her next toy is going to be a literal bubble. She will be Bubble Jaquie. FFS.

No. 379562

can someone please ask her somewhere (ig or yt) how she receives regular mail? please?

No. 379563

>>379558

Someone's eating laundry detergent again

No. 379565

>>379558
Is that mamabear?!! Dr R?

No. 379566

>>379492
They damaged the nerve during a knee arthroscopy and thanks to this she has a lot of neuromas. She gets sympathetic blocks twice a month. Especially with the lack of sleep she shouldn't be able to form a single sentences.
I also want answers from her, but she doesn't want to answer critical questions and her followers are always trying to protect her.

German doctors are really harsh, when it comes to nerve pain. Once you get expensive they send you to another doctor, especially when the medication won't help. You are either lucky and have a doctor who is willing to help or you get lost in the system. Once you saw over 3 or more doctors you get the label "doctor shopping" even though the first 2 only sent you away because nerve pain is hard to treat.
But some munchies are lucky and they find a doctor who is willing to give them all the fancy stuff like a fentanyl patch or a wheelchair.

No. 379568

>>379560

Because she is sooo sick that a card could kill her (but not dino nuggets). I believe even cancer patients with severely compromised immune systems can receive cards (sometimes not used stuffed animals and what not) - her precious blanket probably has more germs on it.
Or she is going the route that she is so super sick that even care packages could kill her. I have seen one or two "spoonies" do a video unboxing of a monthly spoonie care package and show off every item and then explain why they are too sick to be able to use it.
Is she worried someone will send her anthrax? Nobody cares that much to actually try to harm her

No. 379570

>>379555

There are more germs on those fucking Publix cookies and all the restaurant food they eat. JFC

No. 379573

>>379557

Wow! I wonder which of her diseases gives her the power to bend walls??

No. 379574

>>379555

The vog mask doesn't protect from bacteria and viruses. Someone should tell her that her bullshit is showing.

No. 379576

>>379562
It's just another way to be like Mary Frey - the Frey Life don't have a PO box because of Mary's CF.

No. 379580

>>379555

What allergies does she even have? She has said she does not have any food allergies and clearly she's not allergic to dogs. Does she think people will send her letters full of pollen?

No. 379581

>>379576

Munchie see, munchie do.

No. 379586

>>379573
Bend walls?

No. 379587

>>379580
>This envelope is full of amoxicillin! My only weakness!

No. 379589

>>379586
if you look at the walls around her body, you can see some obvious shoop

No. 379592

OT but anyone else here watching Big Brother this season? There's a serious case of it from Raven, she's faking at least 20 illnesses at this point.

No. 379595

>>379592
Explain yourself

No. 379596

>>379592
She's definitely a munchausens by proxy case. There's a tag on twitter and message boards about her lies.

No. 379602

File: 1503694192410.png (38.1 KB, 649x655, ravengf.png)

>>379592
i dont watch that show, but i looked into her. ofc she has a gofuckme

it definitely seems like her mom is exacerbating things by helping her doctor shop for dxs

No. 379604

>>379596
Lol so who's real then if you guys think everyone with chronic illness is just "faking it"? I just find it funny that you guys spend all your time anonymous behind a website over analyzing certain people's behaviors to decide whether or not they are sick. You say that they are crazy for spending so much time putting effort into "faking an illness" yet you seem to spend an awful lot of the time here researching and analyzing over these people. Seems ironic and counter productive. There's truly nothing better you could do with your time?

No. 379607

>>379604
Personally I only keep up with Jaquie. She was an IG suggestion and I started watching her vlogs. At first I was like omg she's got so much going on and then I started to notice inconsistencies. Major ones at that. At which point I looked online to see if I was the only one or if others were noticing too. She posts daily vlogs and has made herself a public figure by doing so. It's not that different than watching a TV show and discussing that. Hi Jaquie, Carmel or whoever you are!

No. 379613

>>379607
I'm actually none of those people. However you probably do know who I am by association. Anyways okay. At the very least it's entertaining to read these things!

No. 379619

These munchies….they're all "look at me, I'm sooooo sick. Give me attention!" all over social media and then when they get attention, it's not what they want. Tough. You look for it, you get it.

No. 379620

>>379613
Well Judd was super defensive in today's vlog so maybe he's been spending time here idk. I always find it ironic when friends/family show up at places like this. We are going to keep noticing the fuckery and talking about it regardless of your presence. The place you could make a difference at is at home by the addressing the issues with the people we discuss.

No. 379624

>>379604

Mild sense of 'go fuck yourself' from reading this post.

"Isn't there anything better I could do with my time?" Bitch, please. I spend 12-16 hour days trying to help the overwhelming majority of people seeking medical help who are actually ill. I do so in a health system that is rapidly crumbling because of long-term neglect, lack of money and overuse. I can discourage overuse through medication reviews and treatment planning and the whole shebang. Then I see the tiny but very annoying and hugely expensive minority of young kids who somehow got the vibe that chronic illness is a great way out of the pressure of adulthood's responsibilities, and are now becoming my problem. What's worse, they do so being very well-informed (they come through the door like it's a fucking shopping mall: I want this and that and that… and I'm like… ok? That's not how it works?), and with zero compunctions as to the trail of damage they leave in their wake - pissed consultants, pissed juniors, wasted money, long delays, and if they put on the full drama show and cry to mum, I'll get to spend another two hours with the Trust lawyers that could have been spent treating patients, sleeping or banging my wife, all of which are much better uses of my time than explaining to the Trust lawyer what a deceitful little shit you were.

Of course there are legitimate chronically ill people. Heck, I'm one - I went into medicine because I didn't want kids to suffer like I did, and I'd like to think I've had at least a minuscule positive impact, though there's always enough suffering to go around. At the same time, after a while, knowing your license and your reputation rests on it, you'll learn how to spot bullshit, and do so very fast and very accurately. Equally, some people are sick but overdoing it, leading to overtreatment, which means someone will have to be undertreated. For comparison: ten years ago, my life was saved by a ridiculously expensive drug that is no longer funded by the NHS because it's so expensive. So statistically, a lot of people who could have lived are now dead (that's how simple it is). It costs the equivalent of just three PEG insertions + aftercare, or a year of TPN for a single patient, to fund it for one person. A year of your superfluous TPN or three munchies craving their gastric hardware could save lives, lives we currently can't afford to save. I'm not an oncologist, but I have no god damned idea how the hell those chaps are able to tell people that yeah, there's something that might save you, but there's no money for it because we spent it on Chloe the Girl Who Got A Genetic Condition From A Vaccine and the rest of the bunch of assholes.

So yeah, this board is how I keep myself from yelling at my average two munchies per clinic day and/or getting very drunk and jumping off our heliport.

Go fuck yourself, you judgmental asshole. What do YOU do with your amazingly special life? Won any beauty pageant sashes lately with a tube up your nose?

Sage for the rage.

No. 379628

>>379602

I want to find the Medtronic rep who decided to call GNSs 'gastric pacemakers' and bang his head into a solid object until he starts making sense.

No. 379630

>>379613
neat. if you plan on staying here newfag, read up on the rules first. sage your ot.

>>379592
raeding up on raven is a mess

>gastroparesis despite eating a varied diet including steak, quesadillas, cookies

>Chronic Intestinal Pseudo-obstruction, which she has dubbed Raven's disease
>endometriosis
>arthritis
>1-2 years to live
>mother says she and raven had their colons removed
>inverted spine
>thyroid problems, nonspecific
>multiple concussions

No. 379631

>>379620

I doubt it's Judd. His vocabulary is simpler.

No. 379635

>>379620
Naaaa I get it I get it. You'll keep talking and I can't stop you. I guess I just don't understand what makes you guys think you know for sure when someone is sick or not. I just wish people would open there minds more to understanding each person is different, each illness presents differently in every person, not everything is cookie cutter, you aren't their doctors, you don't know them in person, and not everything is always as it appears to be. I guess I can see where you come from on the attention seeking habits. Because truly some people annoy me too. (I'm also in the chronic illness community). But I suppose it bothers me when people just don't understand not everything is like X … and Y every single time. It promotes ignorance. It's such a terrible and hateful thing to spread. There's 2 sides to everything. I can see bits of where you come from.

No. 379640

>>379628
What the fuck do they actually do anyway? The UK rarely fund them because of the limited evidence.

No. 379641

>>379635
>>379620
>>379613


I would love to know who this is. Even with fluid symptoms it is so incredibly clear that these people are munchies.

No. 379648

>>379630

> colons removed


That'd probably be a very dramatic exaggeration for a segmental colectomy. I find it extremely unlikely (although if I could be arsed to look for a photo of her belly, I could tell) that they had a Lane's (a total colectomy, i.e. all the colon's gone) or a total proctocolectomy (in that case, she'd be having an ostomy). Pseudoobstruction, which is just fine without an eponym thank you very much (abbreviated CIPO), is not a normal indication for removing the colon - sometimes if the pt is TPN dependent, an ileostomy might help, there are some TPN dependent people with CIPO who work very well with an ileostomy and lots for whom it hadn't had a benefit.

> arthritis


Anon's Law: anyone who does not specify a disease that comes in very distinct forms is probably lying. Hence, anyone who does not distinguish OA and RA does not have medically diagnosed either, probably.

> 1-2 years to live


With the exception of a few indolent cancers, you do not encounter that type of life expectancy in practice. People think doctors can look at you and tell you when you'll keel over. Bullshit. If you're very sick and we know the progression of your disease, we can give you a statistical estimate by whipping out our Kaplan-Meier (that's not a euphemism, it's a survival chart). In most cases, if someone is critically ill (< 6 months life expectancy), we can gauge things very well. Beyond that, however, the theory is that most illnesses do not behave very predictably, and there is absolutely no point in giving pointless estimates like '1-2 years to live'. Again, there are exceptions in oncology, but in GI medicine, we have basically 'you'll be gone before the leaves fall' or 'we have no idea, you may live pretty long'.

> inverted spine


The fuck is one of those? Kyphoscoliosis?

> thyroid problems, nonspecific


See Anon's Law, above.

No. 379651

>>379630
Not to mention her frequent copying/mimicking of everyone else.

https://streamable.com/0fpv0
>Other houseguest gets hurt so she copies her and acts like she's also hurt.

https://twitter.com/ajs0001/status/895516602590011393
>Purposefully bumping into a table to pretend like she's hurt.

https://streamable.com/dsd6o
>Walking fine until 20 minutes later when she suddenly has a limp.

It's just shit like this constantly. She drives me batshit.

No. 379656

>>379640

The evidence is weird as f–.

The theory (and I do say theory because the evidence is flimsy) is that GP is a dysfunction of a type of nerve cell, called the interstitial cell of Cajal, that's supposed to provide a ripple-like peristaltic movement of the stomach to pump stuff into the small intestine. In GP, these cells die off for some reason, though no good explanation has been provided as to why, especially as antibody studies have found zilch. But it is clear that when you watch someone with genuine or induced GP (we can experimentally induce GP in people, it's fun and far from as dreadful as it's described by your average GP munchie! Then again, I have a weird idea of of fun.), you don't see the ripple movement. So the idea was to say 'fuck it' and put electrodes onto the stomach wall connected to a stimulator, which then turns them on in a sequence that sorta replicates the ripples. That's the theory.

The practice is that studies have been weird. Objective studies found no statistically significant improvement in gastric emptying, though the counter-theory to that is that because of the absence of the interstitial cells of Cajal giving the stomach a 'pulse', the stomach wall smooth muscles have atrophied and the stim needs to be on for a long time before they get back to a point that they have some propulsive force. Make of that what you wish.

On the other hand, patients report statistically significant decrease in nausea symptoms, which is good. For fairly complex reasons, no proper double-blind placebo controlled studies were carried out, largely for ethical reasons, so how much of this is the hype (and the associations we culturally have towards cardiac pacemakers and IC/Ds - implantable cardioverter/defibrillators - as life-saving) might be dubious. I know of more than one instance where someone's GNS has failed and it was only found out at her regular check-up, having functioned just fine without it. Again there are two ways to look at this: did the GNS 'fix' her stomach's propulsive system (much like a defibrillator doesn't need to be on at all times to work, it's enough to give a single coordinated pulse to make all the heart cells move in unison), or was it a placebo effect, or…?

Teal deer: I have no fucking idea and I'm supposed to. I agree with the UK not funding it, I disagree with the UK not funding it when it's clear that the patient is sliding down the long path towards TPN. It doesn't cost much more than half a year or so of TPN, so it pays for itself if TPN dependence can be averted. I have seen all of six successful reenteralisations from TPN >=3 months, and that includes several that eventually relapsed to it, and only one of them was a motility issue. So IMHO keeping people off TPN ought to be a high priority, and shit, might as well give them some cool hardware in the process, and to hell with evidence.

And now I'm going to have this box of Xanax with some Glenmorangie and pretend I did not just say that about evidence.

No. 379659

>>379467

Just when she couldn't get any more disgusting…
A wheelchair is the absolute worst idea for her, if she truly has pots and EDS. (It's fairly obvious she doesn't have sooper speschel gastroparesis). She's just going to get lazier, more out of shape and fatter, although I thoroughly enjoy watching her balloon up.

No. 379664

>>379656

Slightly off subject for this feed, but what about with patients who's GP is suspected to be caused by small fiber neuropathy? Is that actually a thing, and does stimulating the stomach work? Asking for a personal lolcow kek

No. 379675

>>379664

I have not encountered, or even heard, of a case like that. Apparently, Debby et al. have, who identified a genetic association with a novel heterozygous mutation in SCN10A (PubMed: https://www.ncbi.nlm.nih.gov/pubmed/26711856), which has to do with the Nav1.9 voltage gated Na+ channel. There's another case that involves a tiny (160 or so base pairs) duplication at Xq28, around the gene coding for NEMO (NF-kappa-B essential modulator) protein, called IKBKG (fuck knows why). But this yielded her a whole shopping list of damage, from immunodeficiency through macrocephaly through GP and peripheral SFNpathy to benign tumours and osteopetrosis (yes, that!). Also something called hypohydrotic ectodermal dysplasia, which sounds like something out of Ghostbusters (don't stone me, I don't do skin or VD). There is an idea that SFP neuropathy can cause dysautonomic syndrome and hence should be able to cause GP - I don't know, it seems like there ought to be many more cases and a better association - SFP neuropathy is not exactly super rare. What I find odd is that many of the dysautonomic symptoms of SFP neuropathy tend to disappear a little too well with anticonvulsants, which tend to be almost all mood stabilisers, and antidepressants. This is so despite the fact that these drugs themselves tend to have anticholinergic side effects that would exacerbate dysautonomia (e.g. vasodilation -> exacerbates low BP, high HR) and themselves do cause some degree of GI symptoms like GP. Which perhaps lends credence to the assumption that there might be something going on there involving the serotonergic system in particular, which we know very well has a very pronounced connection with the GI system (hence e.g. a whole class of serotonergic antagonist anti-nausea drugs, the -setrons: ondansetron (Zofran), granisetron (Kytril), etc.).

Bottom line: I have no fucking idea.

(Cool story time: I don't want to give Munchies tips on what to take here, but the antimuscarinic drugs described above is how we experimentally induce GP - being an absolute demented fuck, as a young SpR, I had a colleague scope me while I shot myself up with atropine. I watched my own stomach ripples slow to near nothing - it was super cool! Having to call my then girlfriend because I couldn't see for shits due to it paralysing your pupil was much less fun, begging her to drive me to work for a week (atropine breaks down real slow) even less so. Don't do it, kids.)

No. 379676

>>379664

Sorry, forgot to give you the link for the second case, the one involving the IKBKG gene: https://www.ncbi.nlm.nih.gov/pubmed/24721901 apologies!

No. 379682

>>379675

People are told to stop certain medications prior to gastric emptying studies. Whether they do or not is anoer matter…

No. 379685

>>379607
Same. I'm not on IG enough to really follow some of the other clusterfucks.
sage for samefagging

No. 379703

>>379651 do you know where one could watch the actual show for free?

No. 379705

>>379682

And then there's munchies, who I'm sure take whatever they can to slow their GI system down. For actual GP patients, there's a whole list of no-no meds that exacerbate symptoms, which any decent GI doc will not allow a GP patient to be on.

No. 379714

>>379705

The thing is, what can the GI dr actually do? They say "no opiates" but the munchie has EDS and complains till they get their oramorph from their pain management dr. It's a losing battle for the GI doc.

No. 379716


No. 379723

>>379705

In the UK, there's a particular OTC medication we're not allowed to test for unless toxicology signs off (tests are very expensive), do not show up on a regular drug screen (it's not an opioid/opiate), its antimuscarinic effect on the stomach is profound but its other anticholinergic effects are relatively moderate so that it's hard to detect on the patient. Induced vs real GP is basically impossible to differentiate. In some ways, we really are at the patient's mercy.

No. 379724

>>379705
>>379675

more than half of what these kids take for their "pain" and bloating and whatever else crap they say they have have antimuscarinic effects. With the list of meds they say they take, some of these people's med lists consist of ninety percent motility slowing agents. You could be perfectly healthy GI wise and develop GP symptoms from all those pills they take.

No. 379728

>>379705
correct. doc put in my chart absolutely no zofran.

No. 379739

>>379728

Loads of people with gastroparesis and gut motility problems are prescribed zofran but the same GI Drs who diagnosed the problem in the first place. They are as much as the problem as the munchies themselves. Also, the GIs who put J and G tubes in patients without even trially NJ or Ng tubes are hideously bad doctors.

No. 379741

>>379739
sage for medfagging but nausea can be easily remedied with reglan if the munchie absolutely insists on something to push through their precious port. i'm not a doctor buuut if a doctor is able to recognize a munchie that doc shouldn't be rx'ing anything that they could use to manipulate their symptoms.

No. 379748

>>379714
Unfortunately they can't do anything. A normal GP patient with eds will find other pain relievers that work without slowing the gi tract, as well as sticking with prince exercises to improve joint pain without medication, but they want to feel better, unlike your average munchie who wants to constantly be sicker.

No. 379751

>>379501
I feel like Carmel is so sooo desperate to be sick and have something wrong with her she is always having unnecessary appointments/tests etc. done. Soon she'll start to make herself sick on purpose. Also I don't believe this for a second that she's eating more - I think she'll end up losing the 3kg to get a tube and cry "I don't know how this happened!"

No. 379752

>>379748
physical therapy and tylenol are too normal for munchies

No. 379754

>>379739
Very true. A surgical tube (g/j/GJ) should be the last resort, after the patient has attempted (seriously, not in the munchie way) to do a gastroparesis diet and a full liquid diet, and then there should be at least several weeks of a trial of a nasal tube, along with trying whatever motility medications are available. Tube surgery is painful and takes a while to recover from, and only munchies get excited about it. Other people just do it because they have to to be functional and not seriously ill or dead. And no normal adult enjoys having to carry around a backpack with formula and a feeding pump that everyone stares at. To munchies it's almost more of a fashion statement.

No. 379756

>>379752
Of course they are. Not sooper speschel like hard -core pain meds. Of course your average munchie also has no interest in leading a normal, functional life.

No. 379758

>>379724
Also, eating disorders can cause gastroparesis. If you screw around with your gi system enough, you can fuck it up pretty well. Recovering from an ed often reverses GP, but other times the damage is done.

No. 379759

>>379756
that's what i think every time i watch a jaquie vlog. she has no interest in a normal life. she's a lazy cow. i can disprove 90% of everything jaquie vlogs about but i would have to reveal myself. if it would put her in her place i would in a second.

No. 379760

>>379511
Bone density probably because of her lack of eating/general nutrition/laying around, but that's just my guess!!

And LOL maybe this is all a plan - she's telling everyone she's eating and it's going great so when she's ready, BAM "guiz that was a bad plan, see I can't eat, I really am sooper sick"

No. 379769

>>379759
You have access to more milk than a dairy farm.

No. 379770

>>379769
i'm not looking to get banned for blogposting or accidentally selfposting that's the issue. i like reading what you all have to say and interacting with everyone. most people here are pretty clear headed about showing the truth of what these people are. i can say you guys were the reason i no longer engage in any kind of spoonie related instagram.

No. 379776

>>379759

Don't worry, anon. What she posts disproves herself!

No. 379777

>>379770

Lolcow is fantastic for making anyone feel better about themselves. No matter how fucked up you think you are, at least you're not a munchie!

No. 379779

>>379777
(Not saying that anyone else is fucked here, more speaking of myself. Compared to all the munchies' walking disasters of selves, I e got my shit pretty well together!)

No. 379780

>>379777
i knew leaving the spoonie community was the right move when i realized i was one of the only ones around who was able to say "i don't want to feel like this. this sucks."

No. 379781

>>379500
Haha I have a feeling the dr said "maybe this naturopath can help with ur GI symptoms" and she thought "oh ok so that means they're a GI doctor/naturopath"

No. 379782

>>379760

Yup. Loss of bone density is often found with eating disorder patients as well as people who don't do enough exercise (or who do exercise but also have eating disorders). So lazy and terrible nutrition? That's just asking for bone loss

No. 379783

>>379781

Yes. As a physician, you cannot directly practice naturopathic medicine.

No. 379784

>>379781

The doctor was probably just desperately trying to get her to munchie elsewhere. Naturopaths can actually be quite helpful for mental illness, but I wouldn't necessarily trust them for gi issues.

No. 379786

>>379780
Spoonies are effed up. I personally know a chronic illness blogger that I won't name for the same reasons you don't want to out yourself who said she's "lucky to be living with chronic pain and illness" da fuq?
Sage for blogging

No. 379787

>>379780

It's not a community. It's a group of people who's lives revolve around constantly trying to one-up everyone else with being the sickest.

No. 379788

>>379787
yeah we should probably stop referring to it as a community altogether right?

No. 379789

>>379786

Just calling yourself a spoonie is flat-out weird. Even for people who legitimately have illnesses. You have an illness, but you're not an illness. You can be sick but still have a life outside of it instead of dwelling on your illness every single moment.

No. 379790

>>379788

A group of insects is called a swarm. I vote for that, as that's how annoying they all are.

No. 379791

>>379790
"how are the gnats today?" sounds good too

No. 379792

>>379790

Or an obstinancy. That's a group of buffalos, which jaquie is definitely starting to mirror.

No. 379793

>>379791
Oh, I like that

No. 379794

File: 1503708800119.jpg (10.98 KB, 275x263, 1439711710721.jpg)

>>379790
lol anon, you saucy wench. i love it

No. 379823

File: 1503712524420.png (446.25 KB, 750x1334, IMG_5168.PNG)

That poor hold life specialist must hatethat she has to cater to this girl

No. 379824

File: 1503712609515.png (579.22 KB, 750x1334, IMG_5169.PNG)

Also how much do you want to bet that she wrote that herself?

No. 379825

>>379823
why child life when she's an adult woman?

No. 379826

>>379824

Didn't take babybear long to join the #spoonie gang. I note she "tubie" in her bio too and she's only had it a week or so. It's obvious she's been eating laundry detergent again and making herself sick. Her solid GES was normal, she does not have gastroparesis.

Why isn't she wearing her epilepsy helmet either?

No. 379828

>>379825

Some pediatric hospitals treat people aged up to 25. Unfortunately, it seemed that she had been told to stop going to their ER but managed to get admitted.

I'm sure the Child Life people must think "what the actual loving fuck?" when they come across her. I guess they cannot deny her as it's their job.

No. 379832

Medfags, what is the actual treatment for Lyme?? I don't understand what these woo clinics are "achieving". Like, Daisy has somehow gone from being unable to stand to running 5km and having driving lessons just from having vitamin infusions???

No. 379833

>>379823
Ugh! Why haven't the doctors realized that a children's hospital is the worst place for her. She takes advantage of all of the services meant for seriously ill children and it is entirely too comfortable for her. I know that children's hospitals can technically see people her age but that doesn't mean that they should. I understand when its a matter of someone who has been receiving care long term from a set of doctors but the claimed GP is supposed to be a new thing. And adult hospital would do her some good.
Also - she is so "sick" that she has to wear that silly vog mask but hospital employees can come and interact with her without gowns or even gloves.

>>379826
It seems the epilepsy helmet has disappeared and all mention of seizures too (which would have been a new thing - she was driving not too long ago and she was claiming to have such bad seizures she needed a helmet. My guess is she realized that it is too hard to try to fake so many complex illnesses. She can buy a helmet and wear it around town to pretend all she wants but it is going to raise more red flags when she is in the hospital and they don't see any seizures or need to give her seizure meds. It probably wasn't convenient for her anymore.

No. 379835

File: 1503713359379.jpg (509.17 KB, 1293x1300, IMG_3067.JPG)

Erm, babybear, I'm sorry but you're telling a little lie. You kept down every mouthful of the solids for the GES last time and it was totally normal.

No. 379836

>>379835

I also cannot believe that an adult woman has posted a photo of her playing with a child's toy on a massive social media support group. That is so weird.

No. 379838

>>379759

Screw Jacquie, she deserves it. Dump that milk. At least give us a taste.

No. 379840

>>379835

Kek she didn't get her surgical tube nor her port. She must be gutted.

No. 379843

>>379838
i'll give you something milky: judd is not as innocent or nice as people like to think. don't "poor judd" at all. i promise. neither of them are nice people outside of the munchieness. like, they'd still be shitty people even if you entirely took away the munchieism.

No. 379845

>>379835
How much would a normal non GP person retain? I wouldnt think it would be all that much less than her?

No. 379847


No. 379848

>>379835
>>379840

If she goes home with that tube (or any tube) for that manner she is just going to use it to make herself sicker. Her goal is to make herself so sick she needs TPN (she will probably stick some sort of detergent down their to burn her digestive system).
More knowledgable people have claimed it looks more like a NG tube instead of an NJ. I doubt the plan was ever to immediately go to PEG. Also if she is vomiting as much as she claims, wouldn't the NG/NJ tube have become displaced and need to be re-inserted yet no mention of that (probably because she doesn't want to actually do anything that would remove that beloved tube).
Also she doesn't have dysphagia so actually swallowing a pill shouldn't be a problem that needs to be worked on.

No. 379854

>>379843
Like is he shitty to Jaquie or just a shitty guy in general?

No. 379857

>>379848

There's so much she can and will do to purposefully make herself sick. She's done it in the past and she'll do it again.

Of all the cows, she is the one who I think is most fucked up in the head. I think she has a deep rooted psychiatric disease and needs long-term treatment where she can be watched 24-7. She is full-on actual munchie because she harms herself instead of "only" exaggerating her illness.

No. 379858

How old is Alexys? I know she's over 18 but is she in her 20s yet?

No. 379859

>>379854
just a shitty human being. you can kind of tell he makes some subtly racist remarks in her videos too if you pay attention. not everyone who is military is automatically nice or a good person.

No. 379861

am i allowed to link to something about judd or do we not post social media of spouses? i don't want to violate privacy because i wouldn't want that done to me just because i was associated with someone shitty.

No. 379863

>>379861
In my opinion he's made himself as much a public figure as Jaquie but that's admins call

No. 379864

>>379863
i'll wait for admin to say yes or no. like i said i won't do to others what i wouldn't want done to myself just for being "associated". but i also do have milk to back up his being a shitty person.

No. 379865

>>379858

I believe she is at least over 21. In the past she has claimed to be super sick but has gone out and drank beer. Obviously she could be doing some underaged drinking but I don't think so. She can be an adult when it convenient to her

>>379857
Agreed. She goes above and beyond exaggerating what may be a minor illness. Others seem to exaggerate to get some attention and sympathy but jonzie seems to have some deep need to be seen as a child and will do anything to get what she wants. She seems to make up these relationships with her doctors (and seems to think they are all super invested in her, very close to her, and care about her the most) which go far beyond the realm of normal. I wouldn't be surprised if in her head she thinks these relationships are real.

No. 379868

>>379865

I just googled and found she's 22. I don't know why but that makes it all worse for me. If she was a teenager, maybe it's more forgivable but she's a fully grown woman.

I am sickened by her "I want to pretend to be a small child with cancer" routine in the stupid beanie and using up childlife resources. It's not on the same level as someone as Carmel who is annoying, it's actually fucking sick.

No. 379869

So is Jacquie malingering maliciously or is she delusional?

No. 379870

>>379869
it seems they're racists taking peoples money and they know what they're doing and don't care if you ask me. i don't know them personally why lie on an anonymous website right? i did my research when they started hocking shirts though. when you start taking innocent peoples money is about the time it becomes less munchie and more malicious. so i dug up some supermilk.

No. 379872

File: 1503716099678.png (418.82 KB, 750x1334, IMG_5171.PNG)


No. 379874

File: 1503716162736.png (716.91 KB, 750x1334, IMG_5170.PNG)

The rest of the post is just her giving a copy paste from web md on pots

No. 379875

>>379872

There is no way someone with such sooper severe gastroparesis would be able to tolerate that rate, especially not so quickly.

No. 379877

>>379840
>>379872

Um, it usually takes much longer for someone who actually has GP to get up to that rate. but if you're just an infantile anachan, it's no problem.

No. 379881

File: 1503716407354.jpg (166.3 KB, 750x1334, IMG_5173.JPG)


No. 379883

>>379881
i thought her ges was normal

No. 379884

>>379874
Also called: "I refuse to eat or drink water so of course I have pots symptoms". Nearly anyone with an active eating disorder is orthostatic, which doesn't automatically mean you have pots. Even the tilt table test that all these munchies fawn over is just one part of autonomic testing. If she stopped being an ana cow and drank some fucking water she'd be fine.

No. 379885

>>379874

Anorexic in low blood pressure shocker!

No. 379886

>>379883

It was. But it turns out you can post whatever you want on the interwebs, whether it's true or (or very much) not. There's also no such thing as a liquid GES (at least that I've heard of). You do the solid food one and they just ask if you've vomited or not, but sometimes people with GP won't vomit, so really she's being dramatic and lying her ass off.

No. 379888

>>379874

Um, no one is on bed rest for POTS. It's the opposite, they make you get up and move and do PT and shit. No doctor in their right mind would let their patient decondition any further. (Even after surgery they make you get up and walk if you have pots). She's anorexic and that's why she's on bed rest, if she even is (since she's a lying fuck)

No. 379889

I've always had a weird feeling about Judd. He comes across innocent because he has sort of a childlike demeanor. But he gives me bad vibes. Post that milk Anon! Blur names/faces if you have to, if it's really against rules admins will take it down but they won't go straight to banning you especially because Judd puts himself out there just as much as Jaq.

No. 379891

>>379889

There's got to be something with him, otherwise he wouldn't have married her munchie ass. Unless he figured it out too late and knows leaving her would make her fans go crazy towards him. He might just be trapped. But idk, I refuse to watch her vids.

No. 379892

>>379889
https://twitter.com/GuyFromLastWeek?lang=en
lets start off with his old twitter account with a brand new profile picture, meaning he could've deleted those racist tweets when he changed the pic but he chose not to. so they're there for everyone to see who simply types his name into google.

No. 379895

>>379891
i'm using my best judgment because he's made it clear he's military and it makes me uncomfortable to post things about a service member. that twitter account was as public as can be. a law enforcement officer should do better to clean up their internet presence before swearing in, i think.

No. 379897

>>379888

They also wouldn't call her a "super high fall risk". High fall risk maybe. And even then, its more likely that they would just want someone assisting her with getting up and moving around. They wouldn't want you lying in bed - wouldn't help with the POTS and probably doesn't help motility either. Somehow she can get child life to come by but not PT?

No. 379899

>>379892
Maybe I'm not PC enough or maybe I don't know how to use twitter properly but other than repeating one stupid comment a girl in his class made I don't see where he's racist? An arrogant self absorbed prick? Yes. Racist? No. What am I missing?

No. 379900

>>379897

Yeah I'm pretty sure there's just "fall risk" and then anyone else who's not a risk. And you're not automatically a fall risk if you have pots. Contrary to what munchies post, many, many people with pots either do not pass out, or manage it so they don't. But being anorexic will definitely get you that speschel yellow bracelet.

No. 379901

>>379895

Let's be honest both military and is police have shit ton of racist assholes working for them. Judds a white guy from the south I'd be more shocked if he wasn't a racist d-bag

No. 379902

>>379823
This actually makes me want to puke

No. 379903

>>379899

It sounds like he's just very immature. Kind of like his wife. Surprising? Not really. At least he's not a malingerer.

No. 379904

>>379902
Especially since she's old enough to be a child life specialist. Gross.

No. 379905

>>379901

Kek true. and Jacquie is white entitlement at its best. My insurance won't pay for what I want (but don't need) , but it's okay because daddy will pay for it. Barf.

No. 379906

>>379901
You realize that you just made a racist comment about him while accusing him of being racist? Not wk'ing, don't know the guy or particularly care for what I see of his personality in the vlogs but that's hypocritical as fuck.

No. 379907

>>379906

Possibly, but as I am white I think I can say it. Also, just because that's my theory doesn't mean it's true. And not as much racist as stereotyping, but really, you have to admit that Jacquie getting everything she wants is something that whites people get more than other ethnicities.

No. 379908

>>379823

Pay to get your own manicure done like an ADULT. Ugh.

No. 379912

>>379906
Unfortunately there are racists everywhere. And due to the current political climate, they've become more brazen in crawling out from their holes. I don't know if that's Judd or not (I would rather have my fingernails pulled off than watch Jacquie's vlogs), but unfortunately that tends to be an often true stereotype. But this thread isn't really about him, so all I can say for sure is that he married a champ munchie.

No. 379913

>>379903

He comes across as quite immature but I get the impression he doesn't get to have any fun. It's not like him and Jaquie have a social life or do fun stuff together. How boring for him. His choice though, I guess.

No. 379914

>>379908

How does she not get embarrassed by that?

No. 379915

>>379503
The new rug is really going to help that falling thing.
She even said something about a tripping hazard as Judd put it down!

No. 379916

>>379913

Yeah, it looks like their life was pretty nice and enjoyable, until Jacquie went full munchie. Very sad.

No. 379917

>>379915

And what do you want to bet she's going to "trip" over it and "dislocate" something.

No. 379921

>>379917
Or dislodges something. Trips over new rug, rips portacath from chest, must have emergency surgery.

No. 379923

>>379921

Port and tube. Emergency surgery and has to start tpn.

No. 379924

>>379555

fucking kek, getting her junk mail out of the letterbox must be a military exercise

No. 379927

>>379924
She deleted her response to that. Must've been OTT even for her. Glad some savvy cow captured it.

No. 379933

>>379927

That's Jacquie's mindset for you. Everything comes down to muh chronic illness.

There was an abortive /baph/ raid on her a few months ago, so she maybe keeping a relatively low profile.

No. 379934

>>379927
I just pictured her going to a po box and licking it. I mean, how else are you going to get that many germs?

No. 379945

>>379934
fan mail unboxing/tasting

No. 379946

File: 1503722854584.jpg (18.38 KB, 183x275, IMG_0663.JPG)


No. 379948

File: 1503722977432.jpg (128.02 KB, 500x337, IMG_2187.JPG)

>>379945
Mail after Jaquie's gotten ahold of it. Now I understand why she gets bloated etc…

No. 379949

>>379933
First off, am I replying correctly and using sage appropriately? I can never tell

What are you referring to on a raid about Jacquie?

No. 379951

File: 1503723312692.jpg (280.05 KB, 582x394, IMG_2188.JPG)


No. 379953

Ugh really want to share one of Kelly's munchie followers that I've been following because it's like she's trying to imitate her (but really has an ED)…. she just doesn't have many followers so don't know if I should. Sage for confusion.

No. 379956

>>379411
I would have thought you guys would have pretty good harm minimisation programmes wrt IV drug use.
Easily accessible clean needles (with sharps disposal obv), swabs and sterile water combined with peer education can reduce the incidence of Hep C amongst IV drug users (including steroid users) by a decent amount.
And the cost of those programmes are far cheaper than the cost of treating people with HIV/AIDS and symptomatic Hep C (not to mention how harm reduction also reduces strain on the health care system).
It's a win win really.

Not only that but most people would agree that the idea of withholding treatment goes against basic common sense, as treatment for someone with chronic symptomatic Hep C, cirrhosis of the liver or liver cancer is going to easily exceed the costs of providing an antiviral.
And that's not even taking into account the ethical problems around denying treatment.

But I am glad to hear your system is proactive in nipping munchie behaviour in the bud (I'm assuming that the psychological treatments offered are decent obv)

sage for harm reduction sperging

No. 379972

>>379790
I immediately thought "Flock of Spoonies" a la the new wave band Flock of Seagulls since so many of these spoonies have hairstyles that put those 80's do's to shame

No. 379978

>>379859
wait what? people assume those in the military are automatically good or nice? kek

Seriously, I had no idea a that a white bruh in the US military being a fucking racist piece of shit was considered anything but typical

No. 379981

>>379978
Definitely not. There are good and bad people in every career field. I think that police officers , the army, and such, actually sometimes attract people who enjoy having power over others, violence, and the use of force. But there are good as well in those fields. Hell, I've met some terrible people working in education.

No. 379993

>>379759
so you're judd? or her mom?

No. 380023

Deciding to step out of the spoonie community has been one of the best decisions of my life and I have this thread to thank for that. I am fighting to get my health better so I can get my life back. Thank you all for this thread.

Sage for ot

No. 380024

>>380023

Who are you?

No. 380040

File: 1503740316117.jpg (28.31 KB, 324x226, IMG_0898.JPG)

>>380023
You're not nearly as cured of your spoonie-ism if you're coming here posting praise/attention seeking shit like this.

No. 380043

>>380040
idk it's better than shilling t shirts or ebegging on a gofuckme. If people get off the spoonie train I dont see anything wrong with them briefly saying so, even though it's technically OT.

No. 380051

File: 1503744569701.png (289.25 KB, 1536x2048, IMG_3070.PNG)

Buy your own bed like the rest of the world….? Nope.

No. 380057

>>379933

/baph/ still exists?!

No. 380059

File: 1503748462989.jpg (947.44 KB, 713x988, nervepainwarrior.jpg)

1) her plush sheep made the post and it called the hospital a hotel
2) the night before she made the post they gave her Ketamin, Dormicum, Fentanyl and Methadon. She needed oxygen and she had problems with her heart rhythm
3) nerve pain in full intensity nonstop and no sleep
4) she screams and cries thanks to the nerve pain. She has to take Anesthetic drugs and strong narcotics in addition to her other strong drugs.
5) colourful smarties(medicine). 30 different kinds of medicine.

How is it possible to write a blog entry a day after(!) they knocked you out? I can imagine that this happens when you are an addict, but as a chronic pain patient?
What bothers me the most is that she is trying to show her 8 k followers how brave she is. And she keeps pretending that she's able to write(!) long entries and chatting while having 8-10 pain non-stop. This is impossible, but everyone who points this out gets blocked.

Another question: She got the diagnosis Asperger autism with 29. Isn't it something you figure out pretty early nowadays?

No. 380060

>>379953

Do it.

No. 380061

>>379906
Can't be racist against white people that's just not a thing. Was it derogatory to call him that maybe but if the shoe fits.

No. 380063

>>379956

I'm neither a drug addict nor really much into hepatology (in Germany, most of GI medicine, metabolics and hepatology are lumped together) so I was going by what colleagues said. Sorry if I was wrong. I do know the harm reduction programmes are fantastic in some cities - where I practiced, we did not have a particularly big IV drug problem, so it was rather hit and miss…

No. 380064

>>379993
I'm betting it more being Janice than her mom or Judd.

No. 380065

>>380059

Wait what? Coprescription of methadone and fent is a strict no-no and the same for ket and midazolam, especially as ket already does most of what midazolam is good for. That package could kill me, and I'm a 6'4" 220lbs ex-rugger bugger. I find it extremely unlikely any German hospital will give all that to you. Also, methadone is almost exclusively known as L-polamidon in Germany, so it's odd she refers to it by its INN.

No. 380066

>>380059

I also find it odd not to see the typical staples of nerve pain treatment - pregabalin, duloxetine, gabapentin, some antiepileptics - in her pill box. :/

No. 380068

>>380059

I'd add one thing here. I'm highly opioid tolerant due to years of fent patches (280mg MSTEq per day). I have patients who are on that or higher dosages, and ketamine sorts them out for a good 6-8 hours. I've had ket twice, and for the rest of the day I had no idea who I was and propositioned one of the nurses in front of my wife (still paying for that lol). So the idea that she is on midazolam, ketamine, fent and methadone AND can put cogent sentences together is rather strange to me.

No. 380070

File: 1503750117609.png (620.73 KB, 720x1280, Screenshot_2017-08-26-14-19-12…)

>>380059
I'd pop all the opiods too, if I had that face with 32.

No. 380072

>>380065
She's from Switzerland. I guess in Germany you can only get this treatment when you are on your deathbed. But even then it's probably either fent or methadone.

>>380066
From 8/14(or 14.8) 350 mg Lyrica, Methadon, Fentanyl, Targin, Ketamin, Clonidin, Lorazepam and CBD oil. What a weird medication mix

No. 380075

>>380072

I have a contact high just reading that. I hope she has naloxone on hand.

No. 380077

>>380061
Back to tumblr you go.

No. 380079

File: 1503751876630.png (141.9 KB, 750x1068, IMG_4216.PNG)

As soon as they move to discharge her she "stops breathing"

No. 380098

>>380064
janice always seems totally fed up with her in vlogs, is also about her only friend, adds up!

No. 380100

>>379869

I want to say that Jaquie's delusional, as she seems to have convinced herself of her own lies - but I'm not willing to say she /isn't/ a malicious, malingering fuck.

No. 380105

>>380064

That was my thought as well, or her husband who is said to be Judd's best friend from high school.

Or that random third chick with a service dog they buddied up with at the mall not long ago. Oh the intrigue.

No. 380109

>>380105
none of those people but it's pretty obvious janice does lurk around these parts

No. 380111

>>380098
I agree that Janiece seems fed up with Jaquie in most of the vids she appears in with her but I tried to watch one of Janieces vids last night about a colonoscopy fail from a week ago and it was creepy how much it was like one of Jaquies. Jaquie wants to be Mary and Janiece wants to be Jaquie. If Janiece is aggravated it's bc the attention is coming away from her.

No. 380118

>>380079
Holds her breath like a 2 year old's tantrum kek

No. 380122

>>380061

This concept is problematic as it privileges racism to white people and dehumanizes people of color.

No. 380128

>>380122

Off topic. Can we not have this (extremely pointless) debate here?

No. 380130

>>380079

Once again, I shudder to see her bacteria-filled Vogmask next to her parenteral preparations. Jesus fucking hygiene, woman! Also, what the fuck, nurses. That mask has this woman's whole fucking festering mouth flora, and you keep it two inches from shit going into her veins. Lister, motherfucker, do you speak him?

No. 380133

>>380065

350mg Lyrica? I don't think that happens, as there is no 50mg Lyrica where I work, but there may be in Switzerland. Lyrica can be scaled up to 600 mg safely, so it's odd she's on two different heavy narcs and a dissociative and another sort of dissociative before maxing out her non-narcotic options.

Targin is apparently oxycodone/naloxone, at which point I'm sorry but I refuse to believe any of that shit. The respiratory depression risk of coprescribing an alpha blocker like clonidin, a benzo, a dissociative and three (!!!!!!!) different opioids including a dirty opioid (methadone, to NMDA), is unacceptably high. I haven't seen this much in terminal sedation of cancer patients who have been highly opioid tolerant for years.

This is almost definitely bullshit.

No. 380134

>>380098

Who the fuck is Janice?

Sage for being dumb.

No. 380136

>>380100

I very much doubt she has. She lacks genuine human idioms of distress, even if one considers her ASD. Everything is too calculated, too much of a caricature of someone else's illness or experience with the wider concept of illness itself.

No. 380139

Ps slightly off topic but relevant: placebo has a moderate effect size for fibromyalgia https://www.univadis.com/viewarticle/fibromyalgia-placebo-has-moderate-effect-size-498426?s1=news so much for it being a soooper cereal condishun.

No. 380141

>>380139
You don't understand the placebo effect.

No. 380148

>>379897
High fall risk means you are followed around by two techs with a belt, not "go ahead and get up, move around, stretch, etc"

sage

No. 380149

>>379949

What raid?

Sage for stupidity

No. 380150

>>380109

WHO ARE YOU?

Sage

No. 380157

>>380133
There is 25 mg and 50 mg(Lyrica) in Switzerland, so she can be on 350 mg.
For me it just sounds like she's highly addicted to whatever she's taking and that she doesn't wanna endure withdrawal symptoms. Maybe she's just taking methadone or just fent and the doctors aren't telling her the truth? Why is she even taking so many dissociative in the first place, when she's just having nerve pain?
And I doubt that any sane doctor would prescribe so many narcotics at the same time, especially with the note "take when needed". Nerve pain doesn't make you a trustworthy person, especially when it comes to narcotics.

She was a nurse and has a master in nursing science, so she isn't dumb. She definitely knows how to trick her followers.

No. 380160

>>380109
>>380150

It's probably her guy friend Julian. He already admitted to lurking on the previous thread.

No. 380164

>>380051
man she is just so fucking insufferable. crying too broke to get a mattress but she just spend a month in a hospital and still getting just random tests and procedures. she must have solid gold insurance to not have to worry about racking up those dr appointments and tests and scans.

all of these deluded women are the same. i cant afford anything!! but here! look at my special kate farms bs that insurance totally doesnt cover. and look, we are going on holiday and my symptoms magically subside enough for a few days of fun but only come back when im bored.

sage for rage

>>380079
true munchie style. leaving the lovely safe zone of the hospital and suddenly more symptoms. why in the ever loving god would her lungs just stop sucking in air? anxiety? from leaving mama bear?

No. 380188

>>380133

In theory methadone and fentanyl isn't totally unthinkable. Unbelievably idiotic to be sure, but there are plenty of croaker doctors out there.

Methadone/fentanyl AND benzo polypharmacy is unthinkable. That's laughable.

No. 380201

File: 1503765401904.png (174.07 KB, 640x750, IMG_2542.PNG)

>>379624
Accepts there's nothing structurally wrong; still has feeding tube.

Can't help but doubt the explanation that the brain knows to vomit food taken orally but not tube feeds! Sounds like an eating disorder pure and simple - NG feed is a way of exerting control over calorie intake/weight

No. 380213

>>380201
ok neat, well get some therapy. its no excuse to feed your eating disorder. she came out and said it herself just in more words.

No. 380228

>>380201
to be fair,most people w/ GI disorders dont have any structural abnormalties. they have functional GI disorders. But psychological nd functionalare 2 whole seperate things. She doesn't need a tube for her psychosomatic vomiting, she need therapy and to get over herself

No. 380249

>>380228
We all know she just loves the attention. It's the only reason she won't give up her precious toob.

No. 380296

File: 1503773947504.png (756.6 KB, 750x1334, IMG_5179.PNG)

"Extreme fall risk" yet walks around unassisted and without shoes

No. 380297

>>380201

Well, that's a wonderful conflation of FGID and psychosomatic illness, which are insanely different. If she's got that from her doc, there's an asshole in our system that treats psychosomatic as FGID. GRRRREEEAAAAT.

No. 380301

>>379760

What I don't understand is why it's a big deal. I have full out osteoporosis in my 20s because of genetics and steroids. You take meds for it, and then you start doing strength training… and you're fine. The test doesn't hurt at all, and the BEST thing you can do is weight bearing exercise. You can do this while bed ridden- 5lb weights and there you go.

Sorry for the blograge but as someone who is sick as fuck and works their ass off to be well enough to work and support themselves as long as possible, it bothers me that these people won't even try. I feel like the spoonie community conditions you to give up on yourself. It's awful and horrible and a self indulgent downward spiral. I'm so glad so see more and more people leaving.

No. 380302

>>380188

I have seen methadone/fentanyl polypharmacy only temporarily, during an opioid rotation. As someone with nerve pain, she should be on methadone, as the NMDAergic activity of methadone has been found to be pretty useful for people with nerve pain who also need an opioid. In general, I don't like the idea of opioids for nerve pain to begin with, so frankly, the fact that she gets enough narcs to kill an elephant for her nerve ouchies looks really bad to me. Fuck, does she not know this is actively shaving years off her life?

(For that matter, so does virtually everything these Munchies do!)

No. 380313

>>380296
kek that is some stellar shooping right there
maybe thats why shes an 'extreme fall risk'- shes shooped half her legs off

sage for generally being a dick

No. 380319

>>380201
I grew up in a cornfield, so maybe I just don't know, but isn't a psychosomatic illness totally curable? Perhaps changing uniCHRON handle and all those CHRONIC hashtags would change the psychological outlook from "chronic" to "healing."

No. 380331

File: 1503776008170.png (256.31 KB, 750x939, IMG_2201.PNG)

>>380060
Okay I'll do it lol. Not sharing her IG name tho cuz she's private and I got in with my munchie stalking IG account.

Where do I even start?! Perhaps a brief intro. So this is KK: she has sooper speshul anemia and has a twin who is healthy. She latched on to Kelly pretty quick when people started pointing out the similarities. Then, when Kelly got a port, she asked all the questions and followed all the port people, and suddenly she needed a port too!! Story to be continued.

No. 380344

File: 1503776547038.png (159.21 KB, 750x1086, IMG_2193.PNG)

>>380331
She's a pretty fresh munchie who goes to the hospital for what seems like no reason at all. She's pretty vague about things but some posts scream ED. And she has an obsession over devices etc lol

No. 380356

File: 1503777992611.jpg (103.58 KB, 322x148, nervepainwarrior02.jpg)

>>380302
Painlevel 8-10 and no sleep for 22 days.
She's able to take a deadly med cocktail and the record for no sleep is 11 days and she's able to stay awake for 22 days, someone has to reward her!
She really needs to spend some time in a drug clinic, because she's highly addicted to her meds. Or in a psychiatry to learn that milking your nerve pain like this will make it way worse. I don't mean the pain itself, but how you are able to cope with it.
In another comment she wrote that her insurance company won't pay for a ventilator. She needs it thanks to her breathing problems. She's a freaking nurse, so she should know that taking less narcotics would help with her breathing problems.

She bought herself a wheelchair and crutches. Soon she will get an electronic wheelchair. What's next besides the ventilator? Portable oxygen tanks? Feeding tube?

No. 380358

>>380319

Yes, it is. They tend to disappear once the psychiatric condition itself improves, and they can be managed in the meantime by a combination of psychotherapy and other psychiatric interventions including medication. However, unfortunately, there's a stigma associated with psychosomatic illness (somewhat stupidly, as a psychosomatic illness can kill you just fine, viz. broken heart syndrome aka takotsubo cardiomyopathy) and among Instaspoonies, there's a belief that if your illness is not 100% organic, your doctors aren't taking you seriously (largely because we do not tube, port, vent, cut and sew people with psychosomatic illnesses). So this dumb bullshit of kids angling for serious, serious, serious and intensely unpleasant diseases just keeps going.

No. 380360

>>380356

Yeah, frankly I'm a little surprised how she's still breathing. Of course no insurer will pay for a CPAP outside its indication (obstructive sleep apnea, neuromuscular breathing issues and a very small number of lung diseases such as late stage CF, where its use remains controversial, and alpha-1 antitrypsin deficiency, where it isn't) to offset respiratory depression caused by ingesting what sounds like Anna Nicole Smith's breakfast cocktail three times a day.

No. 380362

>>380296

Did anybody notice her drip stand power divider has OBICU (obstetric ICU) taped on it? Hmmm.

No. 380364

>>380296
This pic looks edited

No. 380365

>>380362
that means nothing. i was on the general surgery floor for pelvic surgery and i had things around my room labeled neuro and cardio on them. they borrow from other floors.

No. 380366

>>380364
its definitely edited.

No. 380367

>>380364
see
>>380313
Read the fucking thread before you post please.

No. 380372

>>380319
Definitely. I experienced dysphagia (difficulty swallowing, constant "something is stuck in my throat" feeling) and some GI distress resulting from issues with mental illness. When those are more under control, the other "symptoms" go away too. It's a shame munchie twats have to latch on to every little thing (you'd think they might go something like #mentalhealthwarrior idk kek)

sage for blogging though I hope it was helpful

No. 380425

>>380296
Look closely. it's the neda symbol tattooed on her ankle. anyone know what the colors mean?

No. 380434

>>380296

Where's her epilepsy helmet if she's such a high falls risk?

Also, her shooping skills are getting worse. Anorexia must be eating her brain cells, it's too obvious.

No. 380453

>>380434
surely increasing contrast and sharpening the resulting mess into a technicolor display of spoonie strength and cancer kid chic will throw anyone off the fact that her legs are various widths and that her arm is only a few cm off from her pole.

she really is slipping back into ana~goddessu~~ territory. look at muh gp but also notice how frail and fragile i am. #epilepsy but lack of precious helmet. jonzie cannot usurp our munchie queen robyn but she is gunning for it.

No. 380470

>>380358
>>380372
Thanks for answering my question.

Jaquie had an Instagram conversation (now deleted) with someone who told her that since she only got 10% of her nutrition from oral intake, venting would not cause her to lose weight. In her next video, Jaquie said the nurse on call pointed this out. Insta-buddies with her nurse?

No. 380472

>>380296
So she's claiming SMA syndrome? That's so extremely rare. Like 400-500 cases rare. You'd think she'd at least stick to something relatively beleivable. Out of the millions of cases of anorexia, only a miniscule percent develops SMAs and even then it's often revered by weight gain. Even if she had GP, she ain't got SMAs. But she doesn't have any chronic illness. She has some serious case of munchausens and probably psychosis. But that's about it. Oh, and mild anorexia.

No. 380479

>>380164
She never has to worry about paying a single cent for healthcare, she's in Australia!

No. 380480

>>380043
Because nobody gives a shit, it's got nothing to do with anything, and it's blatant 'look at me being important and special'

>>380079
The idea of being discharged must be (figuratively) killing her. It's nice that she's finally stopped referring to herself as a little kid and her favourite accessories as 'tubies and nursies' but she's still so creepy. I really want to know who is made to take all these ridiculous photos and how often she is caught on rounds posing it up. Whoever it is must be there for hours, taking photos on demand and then probably being ignored while alexys starts her next Instagram vigil.

No. 380495

I wonder what it must be like to be Alexys and if she has any insight into her fucked up behaviour. I suppose she doesn't or she would not have posted those pics of her with Child Life. The xylophone photo is particularly creepy.

I've never known any adult woman make so much effort to look like a child with cancer. It's unusual.. I mean I know cancer is often faked (especially online) but she's not claiming cancer; she's just trying to adopt a "look" which is equally fucked up.

Anorexics often don't want to grow up and act childishly but Alexys takes it to a whole new level of crazy. She will do anything to try and keep herself in a role where she can pretend to be a kid. I would be willing to bet a considerable sum of money that she has been eating laundry detergent again to make herself vomit and lose weight, especially as her solid foot emptying study was normal. From what I know of NG and NJ feeding, it also seems that she's been fed via the former not the latter - likely because she's refusing to eat. There are just so many inconsistencies.

No. 380496

File: 1503795756526.png (158.36 KB, 676x844, Screenshot_2017-08-26-17-53-34…)

In the context of being a munchie, this quote is horrifying.

No. 380497

File: 1503796194236.png (143.75 KB, 689x400, Screenshot_2017-08-26-17-52-59…)

>alcohol numbs my pain, but it's just for tonight

That's what all alcoholics say, and spoken by the munchie on morphine who experiences frequent seizures and persistent vomiting

No. 380506

>>380502
Why would she need 6 movies for one night? I would assume staff besides child life has access to movies so why not stick to one or two instead of hoarding a stack? (Also I would assume she has access to Netflix and could get most of those through there).
Her need to be a child goes beyond odd

No. 380507

>> 380470

I noticed that little line from Jaquie as well.

Judd and Paul are supposedly HS friends, correct? And Jaquie and Judd started dating in HS, correct? So who was chronically ill first - Paul's wife or Judd's girlfriend? It seems like this crew has known each other for a long time but it is awfully odd that two young women, friends for a pretty long while, would find themselves BOTH pretty seriously chronically ill, doesn't it?

No. 380510

>>380479
its wild to think as a us anon how these munchies get away with doctor shopping and living in hospitals even with insurance. it must be nice that everything is carried over until you need something extra special then just get a gofundme to get other idiots to pay for it for you. and to still have the audacity to say that money is an issue when you need a custom wheelchair or your organic feeding formula is out of your range.

jaquie makes sense. military and their spouses get deep benefits so her getting away with her shenanigans is totally plausible along with aubrey if youve got deep pockets. its infuriating.

>>380497
>>380503
the thing about alexys that really gets under my skin is that she will take advantage of any situation to get doted upon. #pediatricperks. that is so fucking telling. until she is booted off whatever insurance she is leeching off of shes going to live her childhood fantasy as long as she can.

ive known two kids under the age of 7 who have had charities give them peace of life until they died because of cancer and it is astounding that munchies will 'humble brag' about the kindness of others and go out of their way to exacerbate their conditions to get swag. it makes me wonder what exactly is going on in her life that she feels the need to reach this hard.

sage for some serious personal rage

No. 380513

>>380502
Love how she had to make sure her hand iv was in the pic lol

No. 380529

>>380502
>>380513
Does Alexys's IV have anything running to it?

No. 380531

File: 1503799945143.png (927.05 KB, 750x1334, moviesleech.png)

here are the jonzie images but censored. notice how carmel is a part of the circle jerk (1/2)

No. 380532

File: 1503799970646.png (756.38 KB, 750x1334, pediatricperk.png)


No. 380539

>>380507
Paul actually has Chron's which is probably the most serious of all the diseases "claimed" between Jaquie and Janiece combined yet minus one minor mention it never ever comes up. So who knows where the fuckery train with Jaquie and Janiece actually started but it is interesting that the one person in the group with the most serious illness wants the least attention.

No. 380549

>>380472

SMAS is a bit of a bullshit diagnosis, but by far not as rare according to the dx criteria. And it's a decent suspicion for dysmotiltiy in an anorexic that starts along with the weight loss, but not otherwise.

The problem with SMAS and its asshole big brother, MALS, is that despite surgeries, including arterial grafting for MALS, the return of function is slow and often inadequate when considering that if the etiological theory of it all holds up, revascularisation should fix all problems.

In all likelihood, where SMAS is genuine, the mesenteric artery clenching is incidental to the GI issues. At the same time, it's a convenient diagnosis that lets hospitals bill a shitload, so hey!

No. 380554

>>380549

(Or better put - sorry, it's late here and I formulated pretty clumsily: SMAS arising in an anorexic after years of anorexia is medically implausible.)

No. 380557

>>379933
>>380149
Still not sure if I am doing this correctly but this is a quote from 379933 about a raid. I have no idea what it means

"There was an abortive /baph/ raid on her a few months ago, so she maybe keeping a relatively low profile."

No. 380571

>>380549
I noticed the same thing about Paul and when Janiece is talking after the failed colonoscopy, she says she has pots, but sort of whispers it like she doesn't buy it either. And then she keeps referring to how Jaquie does things, sort of suggesting Jaquie has a history of telling docs what to do.

No. 380574

>>379933
>>380557
I'm curious about the Jaquie raid too. I don't know what that means.

No. 380579

Janiece and Paul seem to have a much more active life than Judd and Jaquie do at this point. Jacquie's vlog into focuses on their "adventures" but the only adventures they've gone on for months are trips to Walmart, Publix, the specialty grocery store for Harlow's food, Mecnhies and the hospital. And nearly all of those "adventures" end in Jaquie dramatically sitting on the floor while Judd administers some sort of IV med due to a medical emergency. It is such a sad way for a young couple to spend their lives.

Paul and Janiece seem to get out and do more active things than just trips to Walmart.

No. 380582

>>380574
The only thing I can even sorta kinda piece together from this comment is that she extremely annoyingly and repetitively referred to a migraine preventative as a migraine abortive. It definitely created a disturbing visual every time she said it. But idk if ppl called her out on it or if that's what OP is actually referring to. Just a guess on my part.

No. 380583

>>380582

An abortive migraine medication is the opposite of a preventative. Abortives stop attacks in progress, examples are mainly the triptans.

No. 380588

>>380352
>>380582
I don't think she's mentioned migraine or headache since the nose med burning reaction that so real that she made Judd turn off the camera. Well, no mention of head pain other than the IVIG reaction, of course.

No. 380592

>>380583
I totally take your word for it and apologize for ignorance. It was just the only thing I could think of that even sorta fit and I've watched her stupid vlogs everyday for months. She's a train wreck I just can't look away..

No. 380605

>>380109
based on how ANNOYED jackie's friend was in the vlog today, pretty sure you're him?

No. 380608

>>380574

Not gonna say much as mods will probably ban me. /baphomet/ was digging up stuff on her and in preliminary stages of a raid. Then the UnitetheRight thing went down so attention shifted.

Dumb idea anyway. She'd have just made a martyer of herself and have gotten more Patreon bux.

The inner workings of the spoonie community are so pathetic they're not even interesting. Jacquie has her head happily buried in her own petty little world and there it should stay.

She'll never try actually attempting to live a normal life. Absolutely every attempt she's made at being mature has ended in unbelievable failure. Her parents will always bail her out and she'll be happy to never leave the metaphorical tit.

Also, gastroparesis isn't the only reason she can't take narcotics.

No. 380610

>>380507

The most remote illness claims that can be found of Jacquie are narcolepsy claims during 2012. There is a 5ish year gap before she claims Cyclic Vomiting Syndrome and eludes to POTS.

Paul's illness pre-dates Jacquie's as the VAST majority of her claims aren't even a year old. She recycles dx anyway. See her talking about Cyclic Vomiting Syndrome, cluster headaches, or narcolepsy anymore?

No. 380620

>>380497
"me updating my story all night is me dealing with the fear of getting injured"
….um okay I think you've got bigger problems here LOL

No. 380621

File: 1503812589443.png (3.36 MB, 1242x2208, IMG_7596.PNG)

I cannot believe what I have just seen. On "Sophie's night" IG story she asked what would happen if she put sourz in her nebuliser (the nebuliser funded by a gofuckme ofc) and then the next video along she'd tried it and nearly died coughing. Followed by "don't tell my Doctor! God forbid I can be a normal 21yo for once!"

Not to mention the fact someone on antipsychotics and god knows whatever else, prone to seizures surely should not be drinking, much less taking straight shots of sourz and brandy from the bottle and chasing it with cider, especially if she's home alone.

This one makes me rage more than most. You could have been a normal 21yo if you'd wanted to be, but the life of a sooper speshul spoonie snowflake and the warm fuzzy feeling of oramorph was a much easier life for you.

But obviously "chronic illnesses are variable and unpredictable" give these fuckers the opportunity to forget about their illnesses when convenient for them. Rage.

No. 380625

File: 1503813462835.png (234.76 KB, 750x1101, IMG_2190.PNG)

>>380344
Ok I've got some more. This time she was obvs not on contact precautions lol

No. 380627

File: 1503813619159.png (224.21 KB, 750x1141, IMG_2191.PNG)

>>380344
bs bs bs bs bs

No. 380629

File: 1503813711755.png (226.91 KB, 750x1102, IMG_2194.PNG)

>>380344
This all speaks for itself

No. 380630

>>380608

UGH! I want to know what they found! I bet it was great!
Sage

No. 380633

File: 1503813963359.png (199.83 KB, 749x1090, IMG_2195.PNG)

>>380344
Then there was the time she had meningitis but then it was sepsis and the whole time she was well enough to update her story with selfies and take IG on a tour of the private room she was put in. Had to show that off!

No. 380634

File: 1503814081845.png (131.88 KB, 750x1222, IMG_2189.PNG)

>>380344
Last for now…will IG pay for my TV while I waste a hospital bed using my ED for extra special attention?

No. 380636

File: 1503814450172.png (163.47 KB, 741x1185, IMG_2204.PNG)

Has anyone come across this one? Seems like another munchie in the making?

No. 380638

>>380634
>pay for my tv
okay what?? As far as I know from exp, you never have to pay to watch anything on the tv. They literally have the remote connected to the bed, boom turn on the tv. Tv not working? Tell your nurse. Bored of tv shows? Hospitals have movies on hand to play. This isn't a hotel where you have to pay for porn.

No. 380639

File: 1503814941456.png (221.33 KB, 750x1140, IMG_2205.PNG)

>>380636
Why always so vague????

No. 380640

>>380638
But then you can't post on insta for extra attention

No. 380642

>>380638

Depends. E.g. in the hospital I'm at, live TV is free but movies on demand is pay to play. It's crap anyway, use the free wifi and Netflix like all of us do!

No. 380644

File: 1503815536709.png (254.4 KB, 743x1168, IMG_2206.PNG)

>>380639
Pill porn!

No. 380645

>>380644

Well, that'll help her fuck all. Most useless medication I have ever prescribed. We give it to people too frail for prucalopride (like cisapride of blessed memory, it can fuck with your heart) who have failed domperidone or feel like they warrant more than an OTC antiemetic because they're so speshul.

No. 380646

File: 1503815816260.png (205.44 KB, 741x1160, IMG_2167.PNG)

Ohhh so that's what service dog "tricks" are for

No. 380648

File: 1503816024323.png (203.87 KB, 750x1135, IMG_2207.PNG)

>>380644
Where in the world can psychologists order lab tests????

No. 380649

Y'all, Jaquie's wheelchair hacks video totally blew my mind. I hope it's okay that I'm posting this recap:

Tip #1: Even if you can stand and open a door rightthisminute, you will have great difficulty once you sit in your wheelchair, errr, your CUSTOM wheelchair with power-assisted wheels just like something from a James Bond movie (just ask Judd). The special chair makes doors too heavy for EDS joints so you will need a service dog and DIY contraption.

Tip #2: Jaquie didn't discuss this tip, but she filmed her friend Julian demonstrating it. As Julian left Jaquie's house, he PUSHED his chair through the door that he presumably opened BY HIMSELF WHILE STANDING. Good tip, Julian! DIY Door Opening!

Tip #3: Before your chair arrives and you lose all ability to walk, go to the mall and walk from the parking lot to the mall entrance and then all around the mall so you can practice with your friend's wheelchair and your service dog.

Y'all, walking around the mall must be much different from walking around Wal-Mart since Jaquie always says she can't walk around Wal-Mart and uses a scooter.

Again, my ignorance is showing, but I mistakenly, obviously, thought power wheels were reserved for people with muscular degeneration who would not benefit from the exercise of rolling their own chair. Maybe Jaquie is preparing for significant muscle degeneration from not walking anymore, bless her potsie-Gatorade-craving-heart. THAT is thinking ahead! So smart! What a mind-blowing video of tips.

No. 380650

>>380649
Kek tip 3 is my fave

No. 380651

>>380636

Vague because she doesn't want to admit the new doctor is a psychiatrist and the central feature of these therapies will be cognitive behavioral therapy, OT, PT, and group talk therapy.

No. 380653

File: 1503816481226.png (355.02 KB, 750x1141, IMG_2208.PNG)

>>380644
Just putting this out there, maybe tho whole watery stools thing would help with the chronic constipation? Balance each other out ya know? Kek this munchie munch argues every treatment unless it's exactly what she's shopping for

No. 380656

File: 1503817015975.png (1.88 MB, 750x1334, IMG_2209.PNG)

Holy she inhaled that in 4mins? I'm actually not surprised. Slightly disgusted watching her story so far

No. 380658

File: 1503817348799.png (1.24 MB, 750x1334, IMG_2210.PNG)

Can't stop laughing!!! "I'm gonna film me going down the stairs because that's usually when I end up falling". What the actual fuck?! That's the most counterproductive thing I've ever heard

No. 380659

File: 1503817445096.png (443.23 KB, 1536x2048, IMG_3073.PNG)

Spoonie munchies are so funny. You don't have a bowel obstruction, you are constipated.

No. 380661

File: 1503817541302.png (1.05 MB, 1536x2048, IMG_3074.PNG)

Yeah you look like you really hated that tube, Aubrey. <rolls eyes>

I'm sure you'll have it back again soon.

No. 380662

File: 1503817567517.png (1.45 MB, 750x1334, IMG_2211.PNG)

Trying all night to find a way to watch the boxing match. Pro tip: take your fat ass to a club with some friends. Probably a lot safer than getting intoxicated alone and filming your every move.

No. 380663

>>380644
Well, bless her heart. Constipation is a chronic illness, y'all. She's going to need a new pill when she learns that "idiopathic" means that there's nothing to "cure."

I bet she drinks all her water every day (the first defense against constipation) and still suffers.

But. Quite a few more treatments! Put away the water bottles because nothing is stopping this journey.

No. 380664

>>380648
Malpractice 'R' Us?

No. 380667

File: 1503818271170.png (81.82 KB, 640x419, IMG_2545.PNG)

>>380656

I guess her GI problems have improved!

No. 380670

>>380661
Do not worry. While she's waiting for her next tube, she has a port to keep her entertained.

No. 380672

>>380638

Idk if she's in the UK Or if it's all UK hospitals but at mine tv is free between 9am-12pm but other than that you have to pay, and it's pretty expensive and there's no DVD player or anything and the hospital doesn't have movies (maybe in the children's ward but not normal wards) not that that makes it ok to beg IG. Take a bloody book or a laptop or even watch something on your phone instead of begging. Grabbers everywhere

No. 380735

>>380510

What's peace of life?

Saged for idiocy

No. 380744

>>380664
Depending on what she is on her doctor can tell her primary to do some blood work to make sure everything is okay. Also some doctors will do blood work if you suddenly have concerning stuff like hallucinations because there are some organic causes for that stuff and it's better to check before doing antipsychotics.

No. 380761

I really do not get how Jaquie can edit those stupid videos and not see how repetive they are. Like 7 minutes of yesterday's video was repeating how Harlow and the carabiner will help her open doors. So she can go to Menchies. And eat more junk food. But Erma Gherd my sooper serious GP y'all. I also found it interesting that once again she mentions that she kicks anyone out of her life who questions the little game she's playing by pushing her to be normal.

No. 380763

>>380649

I think she believes that because the people that evaluated her said ok to the power assisted wheels that automatically means she's going to get them. That wheelchair will EASILY be thousands of dollars and insurance doesn't like to approve wheelchairs as it is.

No. 380769

>>380763
Not that she's trialled any frames, which is kind of important in making the decision, she wishes to go with the brand TiLite. It's unlikely she'll get funding for the titanium, however even in aluminum, without the power assist the chair will easily be pushing $7000 USD.

She'd be better off with a custom fitted modular folding chair considering it's supposed to be for unnecessary occasional use. Though we all know her, the chair will be used 24/7 from the moment it arrives, she'll then beg for one for upstairs and one for downstairs, or for an elevator, or perhaps move house.

Coming back to not having trialled well, anything, the chair will likely not be well fitted, comfortable or maximised for optimum momentum per push, it's going to be shit and hard to push even with the smart drive or whatever she gets, which will result in one of two things; go fund me campaign and tantrum for new manual chair or same gofundme and tantrum but for an electric chair and converted car bc it won't require any effort for her, and will make her look super sick (ironically the two reasons people with an actual need for wheelchairs will go with a manual + power assist if needed, if they possibly can).

Sage for wheelchairfag?

No. 380771

>>380735
Basically making their short, painful, scary lives (because lets be honest childhood cancer is a bitch) a little bit brighter and attempting to help them forget even for a few minutes that they are in hospital/in pain.

sage for responding to idiocy

No. 380772

>>380659

What a clusterfuck. I wonder if any of them know what an actual bowel obstruction is.

And not liking the texture of touching mango or putting your hand inside of a sock, or finding a noxious diesel engine unpleasantly loud, means you have speshul sensory processing disorder, too. That's one of my most hated of Jacquie's scapegoats; it's so obviously munchie and extra.

No. 380774

>>380658
She routinely has "seizures/falls/accidents whilst home alone, or a mixture of all three whilst when attention has been diverted away from her for more than 3seconds. She's queen of the wannabe's and possibly one of the more desperate munchie cows around the uk at the moment.

No. 380778

>>380772
Ugh yes few things incite my rage towards Jaquie's fuckery quicker than her sensory processing disorder excuses. She literally has some type of excuse for everything. Which is why eventually I think she'll want a bubble. In pink, with wheels of course.

No. 380789

>>380778
Yesss. "I don't like the texture of touching (e.g.) velvet" ≠ SPD, genuises.

I guess a hamster ball would match her chubby cheeks. As much as she has to have everything in pink, I don't see much of her home decor that reflects this. Gotta get the unnecessary med supplies all fashionable otherwise you don't get those munch points?

sage for possible repetitive annoyance

No. 380796

>>380649
I never claimed to open the front door in my wheelchair. She has a GIANT step leaving her front door and then another one before leading down to the cars. So that's why I "pushed" my wheelchair out of the door. Not everyone who is in a wheelchair is paralyzed or can't walk at all. There's also minimal space between the stairs to open a door in a wheelchair from her home that I'm not comfortable with. I'm in a wheelchair most of the time but not completely full time so yes I can stand, walk even a little but not for long and not well. So I'm not going to stand and open a door in public which is why you learn how.

No. 380798

>>380796
Dude there's no issue with part time wheelchair use, honestly good on you for walking when you can, which seems to be what the other post you replied to was saying. I don't know how you deal with her shit honestly.

No. 380804

>>380798
I do. I exercise every day and I walk inside my home. I was diagnosed with a progressive Demyelinating nerve disease in my teens so not fully losing my ability to walk is important to me. Hahaha Jaq is handful, but she means well.

No. 380806

>>380804
How exactly is faking multiple chronic illnesses and depleting resources as well as the credibility of actual Ehlers Danlos/Gastroparesis/POTs/Narcolepsy patients well meaning?

No. 380808

>>380806
was going to ask the same thing while the friend is here. how is faking illnesses meaning well?

No. 380810

>>380806
I'm a very honest, blunt, and no bullshit person. I haven't known her for that long (one year) we've been friends. So of course I don't see everything that goes on and I take her word for most things. That being said I would hope if something was going on I would know about it or she would be honest with me. We didn't become friends due to common illness or because I knew she had Instagram followers we simply met in the same college program studying together, so I LITERALLY just took her word for it like I'm saying. I'm a nice person and I don't see why someone who's my friend would be deceiving me I guess. I feel I probably would know by now. Or I would've called them out. But as I said I don't see everything. I don't live there I don't have all my eyes , etc. So what can I really say?

No. 380833

>>380804

Uh…? Methink you've read Sarah Manguso's book. And we've all seen how munchies flock together, so either you're also bullshit like Jacquie, or you're legit and not nearly angry enough that Jacquie is essentially sucking up the kinds of resources that you need.

No. 380841

>>380833
I already responded to what the other anon said in response to her faking illnesses. And I don't know who Sarah is or what book that is btw. I can only speak for myself and stand up for myself of which I do. I'm not her speaker. Notice on here I only respond to comments related to me like the one about me standing up. And as far as my life has been this isn't something new for me I've been ill since I was 5 years old, just not disabled, so I'm not bullshit. Like I said can only speak for myself.

No. 380871

>>380810
You really do seem like a nice person - which makes it extra cringeworthy to see you / your wheelchair treated like a prop in a vlog.

No. 380876

>>380796
Julian, I meant my comment to be a compliment to you. You were displaying common sense with your chair. How difficult was it for you to get your chair?

It's hard to watch someone who is well enough to train her service dog to work with the chair and plans to walk around the mall and train her dog to open doors and then to learn to use the chair [while using YOUR chair, that I'm assuming you actually NEED in the mall] so she can later not walk around the mall…

Does it bother you she wants to learn using your chair? I always think of a wheelchair as a tool made specifically for that person and no one else should use it. I don't sit in anyone's chair…ever…and when I push a chair, I let go of the handles as soon as we stop. I can't stand seeing people leaning on a person's wheelchair handles, putting pressure on the chair in strange ways.

Again, I meant my comment to be a compliment. You can walk, so you opened the door and pushed your chair through, and it seems like a common sense solution that actually uses less energy and is much easier than leaning into a door from a chair, trying to maneuver around or through the door, handling a dog, getting a chair through, and then, if needed, making sure the door closes.

I'm glad you are her friend; she needs a good friend right now. Hang in there!

No. 380881

>>380876
It was an ordeal getting my chair. I think it is for most people because insurance companies are crap. However I had all testing/doctors necessary so it did happen and was covered. And yeah I guess I never thought about it in that light before. It does really bother me when people touch and or lean on my chair when out in public. Strangers. I am very particular about my .. things. Especially important things that are basically my legs and cost upwards of a small car. When you explain it that way it makes sense that chairs are meant for that specific person, yeah. I guess I just wasn't seeing it that way initially because I just thought I was helping her to prepare for her wheelchair. I'm just the type of person who tries to help when or where I can.

No. 380882

File: 1503852987413.jpg (135.47 KB, 600x600, IMG_2225.JPG)

Does this not seem like ED body check posts?? No guise she has super severe gastroparesis

No. 380884

File: 1503853129842.png (213.46 KB, 750x1151, IMG_2219.PNG)

Oh and she has EDS, the magical disease that makes her comfortable sitting in strange positions like this.

No. 380892

>>380882
those are totally bodychecks… she appeared in an earlier thread with farmers calling her out for exactly that
>>380884
ffs thats not an EDS thing, I sit like that all the damn time just because its more comfortable
fucking hate this munchies and their pathologisation of TOTALLY NORMAL SHIT

No. 380893

>>380804


Which one?

No. 380897

File: 1503853620998.jpg (123.62 KB, 600x600, IMG_2228.JPG)

Yay for pills and medical supplies!!

No. 380898

File: 1503853741271.png (186.05 KB, 750x1108, IMG_2221.PNG)

But guise I do have hobbies. Instead of showing u an actual pic of them I'll just show u a pic from when I got injured and was smiling cuz I got to wear a neck brace

No. 380899

>>380897
This chick is dumb af
posting your full name and the pharmacy where you get your prescriptions filled when you have a public account and 19k followers is risky shit

No. 380901

File: 1503853858027.png (116.13 KB, 750x938, IMG_2223.PNG)

>>380892
Must get pic of body with IV pole and warrior beads

No. 380904

File: 1503854092236.png (253.06 KB, 749x1175, IMG_2212.PNG)

This whole post is confusing

No. 380905

>>380882
100% shitty body checks

No. 380913

>>380893
It's a progressive Demyelinating Sensorimotor Polyneuropathy. Sometimes there's an underlying condition that causes it and sometimes it's idiopathic. Some neuros have told me it's due Celiac Disease (since I wasn't diagnosed until age 12 and I continued to eat gluten until around 18) and since I have loads of other complications/issues i.e. EDS etc… the geneticist has told me it could be an under lying genetic issue occurring. Of which I'd have to complete a genetic sequencing test that would cost $6-10,000 that my insurance will not cover. So I just really try not to lose too much sleep over it lol. And I just try to live my life to the best of my ability.

No. 380917

File: 1503854860291.png (145.47 KB, 749x1168, IMG_5187.PNG)

Guys it's been a whole 24 hours since her last crisis so obviously there had to be something new

No. 380920

>>380882

I'm glad someone posted this. She really annoys me with showing off her thinness. She loves the attention.

No. 380921

>>380917

Oh well, we can't have her being discharged from hospital, can we? Maybe tomorrow she can play with her teddies with the child life worker.

No. 380923

>>380921
and the nursies! and maybe they'll change her tubie!

No. 380926

>>380923

It's hard for her, at home her mom probably doesn't change her diaper as quickly.

No. 380944

>>380926
There must not be any bottles at home, hence the tube

No. 380946

File: 1503855779761.png (185.73 KB, 746x1107, IMG_2229.PNG)

Boob-port-girl is now also a college girl lol

No. 380951

>>380917
Canadian anon is charging phone to continue bringing us milk, high five.
Sage for little details

No. 380953

>>380946
i sincerely do not think that 'break a leg' poster is in reference to broadway

No. 380956

>>380882
Definitely the body checks of a patient with an eating disorder

No. 380957

>>380920
Yeah, she seems to have the same problem as jaquie where absolutely everything is about chronic illnesses. Desperation to cover up the ED. I don't understand why these people don't just have a bopo account, accept their ED, and post about recovery. They'll still be attention whores but at least they won't be malignerers wasting resources because they're fake ass fuck heads.

No. 380960

>>380122
Racism is a privilege now? Kek go back to commenting on Facebook statuses you stunned sjw

No. 380961

>>380953
Perhaps it's the start of a to-do list

No. 380963

>>380629
"I was hungry so I asked for some more feeds". Or you could use your completely functioning body to eat actual food. This is an odd question even for someone with an ED. But hey gotta use that cool attachment somehow!!

No. 380966

>>380662
Her boobs probably cause her a lot of chronic back pain. They look so heavy.
Sage because the hearts made me look

No. 380973

>>380472
You're giving her too much credit, she doesn't have psychosis. She is fully aware of what she is doing.

No. 380980

>>380971
right side red, left side blue. it's not black, seen it on Her Majesty irl

No. 380990

File: 1503859139412.png (110.1 KB, 640x1056, IMG_5157.PNG)

>>380980
Kek well in the mpa and pt era red represented "Ana" and blue represented "Mia"

No. 380998

>>380963
All that attachment is is an on/off valve. But if you're a munchie, any new gadget is a win! I bet that hospital cannot wait to get rid of her. I just hope she's not taking up a bed that an actual ill child needs.

No. 381139

>>380904
I thought the point of TPN is because you can't eat?

No. 381150

>>380769
Depends on what her doctors write there are quiet a few EDS people who've gotten them where they didn't actually need them because the doctors and other people knew what to write to get insurance to cover it when what they really needed was a good PT. She might get impatient though even if you need need one it can take several months to get it

No. 381155

Not trying to give her any ideas but Jaquie is one of the few EDS IG/vloggers who doesn't wear splints.

No. 381157

>>380301
All they wanted was an easy way out of adulthood and they dropped as much responsibility as possible the second they found/were diagnosed with their disease of choice. Now they get to be catered to and given things without the expectation of reciprocation. Everyone has to be delicate with them or they manipulate everyone around them with guilt and/or induced or faked symptoms to punish whoever didn't pat their ass. Being a full time spoonie is, to them, the ultimate get-out-of-adulthood-free card.

No. 381158

>>381155
I wonder if she's given any thought that her lack of tolerance to activity more closely reflects general deconditioning rather than any other organic cause. Likely the same for the other munchies

No. 381161

>>379558
Is alexys pretending she's dying now? I'd love to see her playing palliative care tbh.

No. 381162

>>381139
It is. It's the very last resort if someone can't eat. What she's saying makes no sense, if eating is that terrible and you're on tpn, don't eat.

No. 381163

>>381158
Of course not, she's not lazy, she's a sooper speschel sick snowflake.

No. 381170

File: 1503879086044.png (176.41 KB, 750x850, IMG_5192.PNG)

Still pushing hard for that bloody picc

No. 381185

>>381150
it took 8 months for me to get my wheelchair

No. 381214

>>381185
Sounds about right. It took me 6 months. She claims to think she's getting it really soon though. Idk why.

No. 381241

>>381185
I took a bit over 10 months from putting in an application for funding to get mine

No. 381249

>>381241
Why is this thread turning into everyone's blog/spoonie olympics part 2??

No. 381251

>>381170
If they gave her a picc line, I guarantee I'd be infected by the end of the day.

No. 381253

>>381170

She's desperate for one, isn't she?! Ugh, so munchie. She really wants TPN, so I bet it's not long before she's vomiting again and not "tolerating" her feeds but it'll be because she's eating soap

No. 381258

>>381214
Because she's damn delusional

No. 381265

File: 1503888673589.png (157.31 KB, 750x1115, IMG_5350.PNG)

At what point does a distended stomach look like a stodgy pillow where your ribs are?!

No. 381267

File: 1503888746273.png (121.03 KB, 750x789, IMG_5351.PNG)


No. 381268

>>381170
Four sticks and she needs a picc line? Pretty sure there's people undergoing chemo without picc lines so how can she think she needs one for some saline?

No. 381275

So Jaquie railed on and on today about how you can do everything right and still have a bad day. Except she's not doing anything right. She's lazy as fuck, does nothing to improve stamina. No compression stockings. Eats junk food non stop. Can she not see this? Does she not care? She also thinks her IVIG has worn off and she needs more. Except she's not sure it ever worked in the first place. This chick kills me…

No. 381279

>>381265
100% a pillow. And the editing in this is so bad.

No. 381288

>>381258
and because she's already said if insurance can't cover it her daddy will, so if they start taking too long she'll just have daddy pay for it, and it'll arrive in 6-9 weeks!

No. 381372

>>379193
Is that her forearm under the nurse's hand? Bc what the hell is going on with those popeye proportions? I honestly don't know what I'm looking at, but whatever it is doesn't make any sense

No. 381377

>>381279
Pillow under stomach, no g/j tube, no picc line. We've got us a grade a munchie here

No. 381387

>>381265
did she edit her legs to make them look thinner? if so, she failed.

No. 381388

>>381372
LOL it's her wrist and beginning of her hand. I'm trying to figure out how in the world you saw that as a forearm ahaha

No. 381390

>>381279
How are you guys so good at spotting shooping?! I can't see it ugh I wish I could always tell. Like are there tell tale signs you see or is it just an assumption?

No. 381392

>>381265
She must have put this on self timer right?? Like how in the hell do you ask someone to take a picture of you trying to look sick and with a pillow/some sort of object under your shirt? She also has to be stupid as sin to think that looks even mildly realistic. Sweetheart, the pillow is a little too high up

No. 381411

>>381392
Found this; apparently has PNES; seizures that are not epileptic but apparently also genuine.

Manages to not fall from chair or hit head on the counter

No. 381415

>>381411
I've seen this one before and it irks the hell out of me. This isn't any kind of seizure. Non epileptic seizures are still seizure like in that there's no way you could remain seated on a chair with no arms holding you in.

No. 381469

>>381411
these look like extremely purposeful movements rather than the uncontrollable shaking that comes with seizures, including non epileptic seizures, which look, just like epileptic seizures.

No. 381470

File: 1503914799229.png (581.82 KB, 676x1156, Screenshot_2017-08-28-03-02-13…)


No. 381471

File: 1503914822876.png (145.84 KB, 672x328, Screenshot_2017-08-28-03-02-24…)


No. 381472

>>381470

Those are far from what we would consider enormous, and it seems to be her hospital file, so most of it is a running chart of her poop quality and body temperature.

No. 381488

>>379077
>>381470
This reeks of personality disorder
If you wanna do "normal 20 year old things" JUST DO THEM and stop bonding with 86 year olds about how "sick" you are…

No. 381490

>>381488
That's what pisses me off about so many of these munchies / OTTs (among stealing resources for funsies) – it's completely possible to have multiple chronic illnesses and still TRY to live a semi-normal life. Sure, having a job, going to school, doing things with friends may be a little more draining or a little more painful than to a healthy person, but it's completely possible to be a "normal" 20 something.

I'm sure many of us here have illnesses and continue on with life, including education, careers, time with friends, etc. Something that doesn't revolve around the speshul sick mentality. At least for me, my illnesses are pretty crappy, but I suck it up and live my life anyway.

So many of these people want disability payments or what have you that are really only there for those who seriously CANNOT work, not for lazy munch fucks who think having a chronic illness (if they even have one) entitles them to the government's money. Not all chronic illnesses are disabling, and not all disabled folks need to stop everything they do.

But I'm preaching to the choir. It just grinds my gears…

sage for powerleveling

No. 381491

>>381470
What I don't get is why she's having a GA for a mirena coil insertion, most people in the U.K. don't even have a local anaesthetic… I bet you she's going to have issues with it. No doubt she'll suffer with every side effect and probably fuck with the threads/yank on the coil so much she'll get an injury and/or an infection or some shit.

No. 381498

>>381491
i know what she's angling for and it's so convenient it'd be after that girl with veds yelled at her about not being that sick. she wants the super speshul gyno problems that go along with veds. started with her claiming endo and now she's moved on to probably angling for some kind of uterus problem.

No. 381519

>>381498
Next she'll be bleeding herself and blaming it on "uterine fibroids"

No. 381568

>>381519
you heard it from anon here first folks, when she does that you should win $$$. just wait. when the mirena gives her normal side effect of spotting she'll call it hemorrhage and claim anemia

No. 381579

>>381491
Wait, I'm from the states (the land of unnecessary procedures bc patient satisfaction) and I've never heard of someone getting any kind of sedation for an IUD. We literally have dental practices that will sedate you or your kid because you don't feel like sitting through a cleaning but the most I've ever heard of for an IUD is a Valium and/or pain pill to take before the procedure and maybe a few pain pills for afterwards if you have a nice doctor.

No. 381589

>>381579
tylenol before the insertion and as needed afterwards that's about all princess carmel should be getting

No. 381590

>>381579
I'm in the UK and was offered GA for a coil insertion, but that's because I have ptsd. It does happen though.

No. 381592

>>381590
don't give queen munchie any ideas

No. 381626

She finally has proof of a test and she's LOVING IT

No. 381631

>>381411
Buddy is just frying up some eggs and bakey in the back

No. 381633

>>381626
my money's on her being too sick to go back to have them remove it for a couple days so she can have it longer holy fuck

No. 381640

File: 1503931165802.png (213.81 KB, 735x1224, IMG_5934.PNG)

She finally has proof of a test and she's LOVING IT

(Repost as idiot self didn't edit out own IG pic at bottom)

No. 381654

File: 1503934043021.png (169.18 KB, 747x1102, IMG_0259.PNG)

1/2

No. 381656

File: 1503934370617.png (256.3 KB, 750x1184, IMG_0260.PNG)

2/2

What an absolute crock of shit.

"I had a better body image when I had no NG tube!" That's why I prance around and take endless selfies and flaunt it in pointless beauty pageants even though I am capable of taking the damn thing out.

Nicole, seriously FUCK OFF.
Go to therapy.
Stop being an attention seeking leach and get a fucking life.

No. 381686

>>381640
she must be over the moon. even her selfie face looks different, barely contained glee, instead of the weird scrunched up wounded dog look she usually pulls

No. 381690

File: 1503937628948.png (1.57 MB, 750x1334, IMG_2249.PNG)

She likes toooobs a lot

No. 381693

File: 1503937787575.png (151.95 KB, 748x1159, IMG_2250.PNG)

I thought ID bracelets were for life threatening things…..

No. 381695

File: 1503938159398.png (150.12 KB, 748x919, IMG_5206.PNG)


No. 381696

File: 1503938315514.jpg (150.24 KB, 600x600, IMG_2253.JPG)

Lol on the left is omg I'm so excited about my toob it's like Christmas, then on the right is omg I don't want another toob

No. 381698

>>381695
WHO THE FUCK TAKES THESE PICS. I swear she's hired her own personal photographer to follower her around and their mandate is GET THE SADEST SICK KID PICS POSSIBLE

No. 381701

File: 1503938544207.png (168.97 KB, 747x1138, IMG_2254.PNG)

Aww all the munchies are sad today

No. 381705

File: 1503938893312.jpg (127.24 KB, 600x600, IMG_2258.JPG)

Remember weirdo emoji bio girl? Spoonie community is praying for her now.
1/2

No. 381706

File: 1503939132489.png (266.87 KB, 750x1083, IMG_2257.PNG)

2/2 #drama
"Due to all her health issues" …liiike anorexia??? Y'all are seeking the WRONG treatment

No. 381725

>>381706
Yeaaaah it's probably just her posting that anyway. Munchies post as their concerned relatives and friends all the time, famously in the fake cancer cases.

She has anorexia. She's seeking attention.

No. 381757

File: 1503944977328.jpg (633.55 KB, 2219x1079, Screenshot_20170828-132239.jpg)

If she was actually as sick and fraile as she claims the answer would be yes, but then she wouldn't be able to get all the sympathy points.

No. 381772

>>381705
She's got a severe case of anorexia. The other stuff is just bullshit.

No. 381774

File: 1503947184183.png (270.36 KB, 747x1217, IMG_2259.PNG)

Super faithful to being chronic lol

No. 381776

>>381774

Kek at her making a deviated septum sound medical and an actual issue.

No. 381788

>>381693
is there a doctor in the house!? this light-headed lady needs lyrica STAT!

No. 381789

>>381568
Yea boi gimme them $$$. But seriously though it worries me she's getting the mirena as it has strings which she could fuck with and potentially introduce an infection. Plus I reckon she could try and force it into her uterine walll.

No. 381808

>>381789
Forcing it into her uterine wall?! Ugh that made me clench my legs together. I hope people don't do that.

No. 381831

>>381757
I wonder why she needs the additional vitamins/minerals in the banana bag? Surely she could be getting all her daily requirements for vitamins & minerals via her feeding tube?!

Is it that she has this just to support her need for the port which is always on show whether it is in use or not?

No. 381861

>>381831

Maybe all the cookies she eats depletes her vitamins?! ;)

No. 381912

I wonder if Jaquie is reading as she said in today's vlog that soup is "super easy on her stomach".

No. 381927

>>379077
>>381696
who's this? username? I can't thell them apart, they're all the same

No. 381949

>>381912
I wonder too… And for all she goes on about her SPD, she claims she "flips out" and such, but has never actually tried to show us anything of the sort. Hmmmm.

No. 382004

File: 1503964638359.png (149.43 KB, 741x1099, IMG_5208.PNG)


No. 382006

File: 1503964732853.png (217.24 KB, 749x1114, IMG_5207.PNG)

Lucky girl! Seems like she's going to be getting to bring home some of her new toys

No. 382011

>>381696
That's when you know you've got a munchie..its all fun and games manipulating and lying your way around to show the world what you want to be seen as but as soon as things actually get real and out of their control it's devastating..plus a "permanent" urine Cath is not near as fun and as special as a feeding tube. Which is weird because they do not do subp. Caths unless there is no other way and a straight Cath as needed isn't enough, or a temp on and off balloon cath..so getting that type tube should make the munchies crazy happy, way more than these feeding tubes they hand out..but I guess these caths aren't as noticeable..

No. 382013

>>382004
Is Jonzie making up texts again to to to prove someone cares about her? Never heard an American call their mother "mummy" (and she seems to be referring to her mother and not momma bear). It seems like a weird scripted text to come from a mother - especially from someone who is still barely a legal adult and given her history has probably never really been independent (unless she takes on full responsibility for her medical conditions because she can't let others know she causes them)
>>382006 - she is probably happy about going home with that pump because it is bigger and she can pretend it needs to be on an IV pole. And she will babble about any settings so she can pretend she needs all sorts of extra functions

No. 382015

>>382006

Hooray and "mummy" can help her but if not, she can always text mama bear for help. I'm sure she'll find it really hard and before long, she'll be back in hospital. She needs a PICC line, after all. Plus, she knows she's gonna need TPN soon as she'll "vomit" her feed.

No. 382033

File: 1503966182694.jpg (268.94 KB, 1046x580, Screenshot_20170828-191938.jpg)

I smell Jaquie's BFF fishing for a gastroparesis diagnosis.

No. 382035

>>382004

There's no way that beanie-loving giant baby handles anything on her own, except maybe buying her own laundry detergent.

No. 382038

File: 1503966491382.png (212.54 KB, 750x1111, IMG_5210.PNG)


No. 382040

>>382011
but what fun would an actually needed tube be, especially if you can't walk around in a crop top so it shows your minions/frozen/kids tubie pads?

No. 382045

>>382006

One thing about these feeding tube munchies that I just get sick over is when they are given a tube in the hospital the Drs want you to continue at home the hospital won't discharge them until they are at or very near their goal rate and tolerating it. This gives them nothing but time by crying about the feed rate hurting and a slew of other complaints. I have seen some drag this out for 3 weeks at a time..eventually when they keep complaining and the Drs are fed up with their being no real reason they can't handle the feed. shit goes downhill quickly and are discharged with the RX of increasing at home….which won't happen except for a photo maybe..these situations get so ugly.
For the record if you are given a flush pump for along with feeds, they are not concerned with motility! Your tube will not clog without the hard flushes..typically if you've got the flush it's not a special serious motility issue.
Sage for grumpy. It just really erks me how some take advantage of the systems. I don't know how they sleep.

No. 382048

>>382038

Anyone on a high enough Ambien dose can sleep-eat. Munchie fail.

No. 382051

>>382045

What's a flush pump? I'm so curious to know if Jonzie actually has an NG, also if she's just refusing to eat.

Sage for OT.

No. 382053

>>382040

You can buy pretty covers for colostomy/ileostomy bags, so I'm sure she can find a nice one for her piss bag.

No. 382103

>>381927
Oh it's cut off. That's dyingto_eat

No. 382105

>>382053

SPCs are not stomas in the same way ostomies are. They're simply a tube coming from your bladder, that is all. There are even button type ones that can be opened and drained as needed - I have one and they're very practical.

I think she's just putting on a huge sympathy show. Especially as the reasons for why she needs an SPC, an absolute last resort used when urinary retention (1) won't ever resolve, guaranteed (e.g. in the case of SCI) and (2) is starting to damage the kidney.

No. 382120

>>382015
Who knows what she'll start pumping in herself. Definitely makes that a whole lot easier for her!

No. 382121

>>382048
HAHA or seroquel tbh. But these munchies won't like that with their eating disorders

No. 382122

>>382105
So on top of refusing to eat she's refusing to pee??? kek

No. 382139

>>382051

It's a feed pump that allows you to hang 2 bags, one is the formula and the other is water.
There are settings that let it so your feed goes in at set rate, and every x amount of time you get a sort of a bolus type flush of the water and switches back to your formula

No. 382178

>>380302
there is no proof that controlled opiate use reduces life expectancy, but chronic pain can.
Personally speaking I would rather have a slightly shorted life expectancy if that allowed me to be pain free than a longer life with debilitating pain and reduced quality of life… it's all about balancing the pros and cons

No. 382190

>>380638
I'm in Australia and ime you have to pay to rent the use of the tv (even free to air) which is a bit of a drag.
Plus you don't want to bring in laptops etc bc they could get stolen and when you're in there for days on end it gets really fucking tedious really fucking fast.
But the solution is easy- you either bring in enough $ to pay for the tv rental yourself or your family/friends can help out if needed, so there's no need to beg online

No. 382195

I'm from Australia and was offered a GA for the Mirena as well as I hadn't had a baby. They said if I'd had a baby they would've just inserted it in the office.

No. 382201

File: 1503982201379.png (181.48 KB, 750x1212, IMG_2263.PNG)

1/3 Just stumbled across this one. Not any more special than your average munchie as far as I can tell. Gastroparesis etc listed in her bio, def seems more like eating disorder. This mask tho kek

No. 382202

File: 1503982281951.png (179.74 KB, 750x1198, IMG_2264.PNG)

2/3 Guess she thought the NJ was worth it! But she's ready to move on. Getting jealous of all the other munchies out there.

No. 382203

File: 1503982323802.png (206.6 KB, 744x1190, IMG_2262.PNG)

3/3 She's even collecting all the accessories!!!

No. 382206

>>382201
Love the mask. Perfect for, I don't know know, construction? Spray painting? Varnishing something? Hope she got a good deal at Home Depot.

No. 382209

>>382139
It's not a special pump, all the pumps do that (I think, at the kangaroo pumps all do). It just depends on if you put in a single pump set (just formula) or dual (formula and water). It's not anything special like these spoonies so desperately claim.

No. 382211

>>382202
Yeah, they don't use a 1.0 formula for gastroparesis in a jtube. Either 1.2 or 1.5, even up to 2.0. Sorry, sweetie, you've just got an eating disorder.

No. 382213

>>382190
At least you don't go into years of debt for just an average hospital stay. I'd take that over free tv any day.

No. 382214

File: 1503983195472.png (208.94 KB, 750x1101, IMG_2267.PNG)

This was too milky not to share. She diagnoses herself LOL

No. 382215

>>382203
Oh how cute, you have asthma. Just like millions and millions of other people. I see you wear glasses as well, however are you surviving without a seeing eye dog?!?

No. 382216

>>382214
Omg. It's fucking called low blood sugar, because your eating disordered ass won't eat.

No. 382217

File: 1503983339531.png (175.94 KB, 750x1106, IMG_2268.PNG)

Okay she gets this diagnosis and somehow is still getting people to play along? Her GP=ED. All the other illnesses she hashtags are like wtf?
PS she also has a real vog mask now

No. 382219

>>382215
don't worry she just got a puppy to train

No. 382220

>>382217
Is this Nicole in disguise???? Where's the sash?

No. 382223

File: 1503983632666.png (191.13 KB, 750x1087, IMG_2269.PNG)

>>382206
Haha probably needed for this. Can't breathe the chalk fumes guize.

No. 382224

>>382222
Sounds like someone needs some serious depression treatment….

No. 382228

>>382223
Maybe she hasn't gotten a call because she doesn't actually need infusions?? If you actually need an infusion, hospitals will fit you in within 24 hours or less, normally.

No. 382229

>>382224
Or a hobby.

No. 382231

>>382219
And that poor puppy will be fucked, just like Jacquie dog, Harvey, or whatever

No. 382254

>>382215
I'm sure you can get warrior beads for wearing glasses!

No. 382257

>>382231
I feel so bad for Jackie's dog, not just because it has to put up with Jackie. Harlow is one of the most active breeds, and most days the extent of her exercise is carrying a blanket across the room for Jackie.

A golden retriever should be walked twice a day, even one who's an assistance dog for somebody with an active lifestyle but it's especially important if their lifestyle is that of potato like Jackie.

sage for grumpy about dog mistreatment

No. 382272

>>379347
Can you translate this for us? I think there probably aren't that many German speakers here and the rest of us miss out!

No. 382273

>>382257
Ah, Harlow. Guess I mixed the poor pup up with the hurricane. But yeah, jaquie treats him so badly. Pretty much all dogs, and definitely bigger dogs like Harlow, need walks every day, if not multiple times a day. If you adopt an actual service dog there's an agreement that you have to provide certain things for the dog, including exercise, time off, play time, and training. Jaquie's lazy ass doesn't do any of those with any regularity. I'm not even a dog person, but I know a dog deserves better than that.

No. 382276

>>382254
And going peepee in the big girls' potty! What is the obsession with adults having to have the beads? Cute for kids, yes, but weird and infantilizing for adults (not to mention the money they waste on them).

No. 382295

>>382272
working on it :)
Her account is still locked

No. 382299

>>382276
Maybe for a teenage girl or young adult with a life threatening/terminal illness, i.e, cancer who's in and out of hospital, but not for your average munchie.

No. 382307

File: 1503994022314.png (243.82 KB, 1536x2048, IMG_3085.PNG)

Lo and behold, she ends up with a gastroparesis diagnosis.

No. 382315

>>382105
OR if jou have trouble self-cathing, e.g. upper limb disability or pain with catherization.

Both could be very valid, but it's also subjective: if you say it hurts your joints to insert a catheter 6-8 times a day (though for most people, undoing your pants is much heavier than taking a small tube between two fingers) or your urethra is so so sore, who can proof you wrong?

No. 382317

>>382307
It's a self-diagnosis though. Her mother read a book and she has all the symptoms (although GP symptoms are pretty a-specific), and she's already praying for a gastric stimulator.

No. 382335

File: 1503997221810.jpg (485.23 KB, 726x940, seriously Kopie.jpg)

>>382272
not the best translation. It's the 2nd photo of one of her birthmarks during the last few month and I don't think she saw a dermatologist so far.
She likes to delete her own photos, explanations or comments of people, that "question" her.

No. 382348

In her last vlog Jaq mentioned soup/broth is easy on her stomach. That sounds about right for GP. So why does she say "normal GP safe foods don't work for me, so I just eat whatever I want"? Then she goes and eats a bunch of hard to digest, greasy junk food and has bad GP symptoms. Complaining all day and repeating herself over and over that "even if you do everything right, chronic illness doesn't always play fair" (ugh shut the fuck up with that one already)

I know it's been discussed already but oh my fucking god she pisses me off so much.

She also said miso soup and rice settles well in her stomach. That'd be so easy to make at home, miso soup can come in single serve sachets that just need hot water. You can buy precooked microwave packets.

When does she ever eat fruit/veggies? They can be peeled, cooked and pureed. Oh but then she wouldn't need banana bags, justifying her port which she can dangle out the top of her shirt 24/7, and make transfusion prep montages with funky-free-youtube music.

Well, you know what they say, a doctor a day keeps the apple away.

No. 382361

>>382211
Are you retarded
The higher calorie formulas are harder to absorb

No. 382367

>>382307

Oh God, the dreaded 'mum read a book' syndrome, bane of paediatricians all around the world.

Why the fuck is she praying for a GP dx, and more importantly, has no-one told her GNSs have basically zero evidence base in somatisation disorders?

No. 382373

>>382367

She goes from saying she thinks she has gastroparesis to starting to hashtag it and say she's in a "flare" and then has the gastric emptying study. There's radio silence about the actual results but then she talks about it all the time and then comes the precious tube,

No. 382380

>>381411
hahaha what a load of bullshit
Clearly a terrible seizure judging by the concerned reaction of the man behind her.
Can you imagine living with that stupid cow? Ugh I'm actually wishing a real health crisis on her,

No. 382397

>>382213
no arguments there, I feel a lot of compassion for people in the States who fall sick, or even worse have preexisting conditions
I had an extreme IUGR baby and from what I understand the 2 months she was in NICU/SCN plus my emergency cesarean would have ruined me, esp as I'm already poor
I do not understand why anyone would be against socialised health care but obv that's a whole other discussion

No. 382398

>>381411
You can find loads of questionable seizures on YouTube. This lady also claims to have foreign accent syndrome, which was caused by a 'brain eruption'.
http://www.dailymail.co.uk/health/article-3429921/One-day-m-German-m-Scottish-Bizarre-tale-American-woman-claims-brain-eruption-left-Foreign-Accent-Syndrome.html

No. 382423

how do these cows who claim to have such bad EDS haul around a heavy backpack with an infusion bag, a pump, and a formula bag all the time? always surprises me they can suddenly lug around their toys but can't work

No. 382428

>>382423
The few i've seen with LEGIT eds + need for tubes seem to use wheeled backpacks or IV poles.

No. 382437

jaquie goes on and on about resting. that's all she ever does except go to walmart. what's the different between rest days for her and every other day?

No. 382446

>>382437

Walmart. But even then she uses the motorized cart bc ermagherd muh everything y'all.

No. 382451

>>382299
I cannot stand the whole 'warrior' thing. Not even for cancer. I understand it may be a helpful concept for some people, but I hate that there is a whole culture around it that seems to tell us you are 'strong' when you 'fight' (i.e. receive meds for) an illness. So someone who chooses not to endure chemo because whatever reason that may be very, very valid and also their own personal friggin' choice, people say they are 'giving up' or they 'stop fighting'. It seems to suggest that being sick is some kind of personality flaw or weakness. When someone dies they 'lost the fight'. So, what? They should've fought harder, or they wouldn't have died?

It's stupid. When you are ill, you get treatment. Yes, there are some thing you can do yourself to feel better, but especially for cancer I think it's a really, really bad concept that seems to suggest someone who died because they had a rotten disease that did not react to treatment is somehow weak or did not 'fight hard enough'. Urgh.


Even more cringeworthy is the chronic illness and MBI community adopting the concept. From personal experience: fighting chronic pain is stupid and depletes your energy. You have to find ways to live WITH it, not fight AGAINST it.

(And now I REALLY hope I saged this correctly, I'm kind of new here and this is the first I make that I feel warrants a sage.)

No. 382472

>>382428

Yep. They can add IV poles to wheelchairs or walkers even. I definitely wouldn't be able to carry my pump and formula, it's pretty heavy.

No. 382486

>>382472
If you're in a wheelchair, you don't even need a pole. Pump+formula in a backpack, hang it behind your chair, and off you go.

As for infusions, I don't even think home infusions for POTS is even a thing in e.g. Europe or the UK, or is it? As far as I can tell, it's a fairly recent thing and also limited to the USA. Years ago I researched it for a friend, but back then I never saw regular infusions mentioned as a treatment option anywhere. The most I could find was some anecdotes of people who found themselves in hospital for something else saying IV saline was a (very) nice extra. It was just assumed I guess that having infusions at home for dizziness is just not feasable.

Not saying it's NEVER a legit treatment for hypovolemic POTS patients, but some of them seemingly would book port surgery on the same day as their tilt table test, if they could.

No. 382489

I call bullshit on Julian. I think he is just as fed up as we are or he wouldn’t be here. There is no way that a true friend would hang out here just out of curiosity or to lurk or whatever. If I truly believed my friend and her plights the shit that gets said here would be infuriating and I wouldn’t want to read it. Obviously one person isn’t going to stop it and none of it violates the forum rules. So being here would be pointless. Unless he agrees with most of what is said. So either he doesn’t believe her or frankly he’s not a very good friend because let’s face it, this is a weird line to walk. Hey Jaq, I am your friend and I support you but I hang out on your snark board on the regular. Um, no.
Sorry if this pisses anyone off but it’s been gnawing at me for a couple of days.

No. 382507

>>380810
Sorry Julian, I don't know how to quote, but you wrote:
"I'm a nice person and I don't see why someone who's my friend would be deceiving me I guess. I feel I probably would know by now."

That's because your mind won't go there. You're her friend. Normally, you won't even THINK that someone was lying to you about something like this. Even when some things they tell you seem suspect, you just cannot believe someone would actually be lying about it. But don't be so sure you would know. Wanna know how I came here? I have a friend that I've known for almost ten years and I recently found out she lied about having cancer and a whole bunch of other stuff. And psychology is my area of expertise, so go figure. I knew about factitious disorder. But the thought that a friend would lie about something so appalling, it seems that our mind just won't go there.

No. 382530

>>382507
It's very probable that niggling feeling that things just don't make sense brought Julian here. Jaq has the same symptom as him a week later, that jaq gets a wheelchair right after he does.

It sucks to find out your friend is a manipulative munchie Julian, it sucks, but do yourself a favour and get out now before things get worse for you and before her copy cat behaviour starts to make doctors (especially if you share doctors) doubt you.

No. 382531

>>381411
I don't know anything about seizures but someone was holding the camera because it moves with her, so convenient?

And wow, she should have been a gymnast. If she could stay on that chair while having a seizure, ain't no way she'd fall off a 4-inch balance beam!

>>382217
I am waiting for these somatic disordered peeps to talk about their intensive cognitive behavioral therapy. Or using a TENS unit to reset the nerve signals. Or, anything that might actually work.

Still. Waiting.

No. 382534

>>382507

I think Julian is trying to sort it all out. He went over to hang out and all she wanted to do was film wheelchair tips (talking with gusto in the video) and then, when they were finished doing what she wanted to do, she wouldn't go with him to do what he wanted to do because she was too tired.

Now, if he suggested going to the mall to work on wheelchair and dog training, she might feel better.

No. 382550

File: 1504023080930.png (1.41 MB, 1334x750, image.png)

Look at that pudge Jaquie has goin on

No. 382580

>>382486

They do happen in the UK but are relatively rare. Mostly, it's for people who have been using ER services for hypo POTS and failed on Florinef/can't take it for whatever reason.

No. 382587

>>382486

Side note: I don't understand why they're getting ports. In general, patients should get a PICC line, see how it works, ideally a powerinjectable one. Then a funneled cath like a Hickman. If they manage with that, and if there's no need for daily or frequent access, they can have ports. I have a dozen or so TPN dependent patients, and none have gotten a port immediately. The only one whom I signed off to go from PICC to port was a very active and athletic young man and I was concerned the Hickman would get tangled or something.

Bottom line, a port should, in these cases, never be the CV access modality of first choice. Especially given that ports are much harder to exchange and manage if they get infected: its good for us to know which patient will be able to not fuck up a complex and expensive medical device and which patient won't.

No. 382590

File: 1504025433162.png (57.17 KB, 750x357, IMG_1517.PNG)

she's so stupid. you're allowed to read your own medical records. if they're not allowing it they must suspect she's a munchie bitch.

No. 382592

>>382550

Despite advantageous lighting, there are clear stretchmarks in the lower part of her abdo, indicating that she is going through rapid weight gain.

No. 382594

>>382590

In general, we don't like patients looking in their medical records because they might draw wrong conclusions leading to concern or fear. I had a patient misread Ca (calcium) as CA (sometimes used euphemistic abbreviation for cancer) and panic call my emergency number at 0330. Our hospital practice is that they can book an appointment with a doctor to discuss it and then get a photocopy, or we can send a photocopy directly to another physician but not the patient.

No. 382596

>>382531

Well, we already know from hypermobileguy that people suffering from functional disorders can twist their docs' words into meaning they'll never walk again (what a crock of shite), so I'm pretty sure plenty of somatic people have concluded 'I've got this diagnosis, I'm now going to be like this until I get bored, at which point I magically recover'.

No. 382597

>>382594
probably a better system due to patients ability to panic right away. here in the US when i switch health systems due to an insurance issue the first hospital gave me a stack of records and sent me on my way.

No. 382598

damn judd is NOT having it anymore in the newest jaquie vlog

No. 382617

>>382598
I have never seen him at this level of over it before. Jaq: "I'll just pick at Judd's food" - Judd "NO you won't" haha.
And this just blows my mind… she goes on and on about this new formula and how it's gluten free and dairy free and preservative free but eats ice cream, and frozen yogurt, hush puppies, deep fried battered shrimp, mac and cheese, chicken nuggets… All of which has either dairy, gluten or preservatives. I don't blame Judd for being over it. I can barely stand a 15 minute vlog without throwing something. This is his life.
Last thing. Judd is a cop. Judd has actual adventures. Going to the seafood restaurant is not an adventure Jaquie. It's just a thing that people do. Fuck.

No. 382649

>>382307
I find it hysterical that she claims to have EDS but she can't even spell it

No. 382683

>>382587

Also, ports that are always accessed, like Jacquie's, have a higher rate of infection compared to a tunneled central line. I'm super surprised she's never gotten an infection.

No. 382684

>>382550
Jesus. She's gained at least 15 or 20 pounds. That precious button of hers is not going to fit much longer.

No. 382686

Is it just me, or does Jacquie have to have TWO of fucking everything, she got another special heating pad to have downstairs so she doesn't have to do the hard labor of unplugging the first one and hefting it down to the couch.

All her feeding tube moaning today was laughable. Much eye-rolling.

No. 382688

>>382604

Yeah, she has a super irresponsible doctor. She should have had an NJ tube for several weeks at least. She's definitely not going to mayo, as their policy is a mandatory NJ first. She doesn't need a sooper speschel formula, because she's able to eat whatever crap she wants. She's probably desperately trying to stop packing on the pounds, and thinks a change in formula will help, when really it's because she's getting tube feedings on top of stuffing her face with food all day and never getting any exercise. What a sad existence, not to mention what happens when everyone in her life gets tired of her lies and moves on.

No. 382702

>>382688
It sounds like people have already started to get sick of her lies. She has specifically mentioned having to cut people out of her life and if you look through her IG there are friends she went places with a year ago who are nowhere to be seen now.

No. 382722

In today's VLOG Jaquie is so deconditioned that walking from the restaurant to the car makes her out of breath and winded. How do these munchies not realize that they're the cause of their own destruction?

No. 382723

"Ow, my feeding tube"… "Ow, my feeding tube" …. "Ow, my feeding tube. I've been saying that all day ;)" -Jaq on the vlog today.

In other news, Jaq wasn't in an "eating mood" then ate hush puppies and tried to pick at Judd's food but he didn't let her (ha), Judd ordered chicken at a damn seafood restaurant, Harlow came a little too close to getting hit in the face with a toy helicopter, and Jaq got way too excited about seeing her GI doctor.

No. 382728

>>382723
>>382598
>>382604
Can someone post the video?

No. 382733


No. 382744

>>382723
Why does she wear the vog mask in the restaurant before the food arrives but can magically take it off after to eat food she doesn't need because she's on a feeding tube? All of the germs/allergens etc are suddenly non-existent with a plate of food in front her?

No. 382752

>>382733
Wait, didn't she say just a few days ago she was loosing weight because she couldn't tolerate the formula? Now she says her weight is stable and she needs to gain just a few more pounds?

No. 382754

File: 1504039857313.png (176.71 KB, 600x977, IMG_2579.PNG)

Did HMG really have Leukaemia or was it a severe case of MBI?

No. 382756

File: 1504040040903.png (165.71 KB, 640x747, IMG_2580.PNG)

>>382754
Another productive day at other people's expense. I'm so glad to know my taxes are well spent!

No. 382762

>>382604
To answer the draining question
in general it's avoided.
But there are some cases where draining the stomach (even 247) improves quality of life, seriously helps some symptoms that are awful, helps prevent other complications in some people like aspiration, major acid issues so on. Uncommon and venting is ideal of the 2 options but it's not always an option. Granted this would require the person to actually be sick and the dr RXing the use of drain and not a pathetic person just wanting to drain all the time (or lie about how often. Drain vs vent so on) or more than the Dr says..whicj is why so many have GJ vs separate tubes.
In a way it's like a gastric bypass without the surgery.

No. 382763

File: 1504040743665.png (92.81 KB, 750x1023, IMG_5217.PNG)


No. 382764

File: 1504040759958.png (229.54 KB, 750x1114, IMG_5218.PNG)


No. 382773

>>382754

What's he on O2 for? Functional lungs not working disorder?

I would seriously doubt he's ever had leukaemia. IIRC he did have a burst of nonmalignant asymptomatic leukocytosis once, and is too dumb to know the difference, but I may be confusing him with another fuckwit.

No. 382774

>>382764

Feeding tube and TPN backpacks are the worst. I could sperg all the lovely day about why they are a horrible thing and why I principally refuse to sign off on them, even if it's my favorite dietitian doing her puppy eyes pleading routine for it. They are grotesquely overpriced and they have - I can say this from experience as someone who has been both on ambulant tube feeds and ambulant TPN - no discernible advantages at ALL. Most patients don't want to carry a backpack that has extremely little other useful value due to its freaky odd shape and relatively little place on the inside and advertises 'hey I am tube fed!' with a big fucking FreKa/Nutricia/whatever logo. I haven't met a patient who liked the damn things. I have seen some ingenious adaptations of regular, COTS backpacks that were infinitely superior and a fraction of the price of the special backpacks.

Sage for GI sperging.

No. 382799

>>382733

Day feeds only is her fucking goal? Jesus.

Mostly, we tend to get people on night feeds + possibly bolus feeds to make it through the day. But for someone who wants to show off that she's totally very much absolutely tube fed you guys!!!!! but not have to deal with obstructions at 0330, of course day feeds are the goal.

What a fucking bag of Munchies.

No. 382801

>>382774

Probably because the average individual who requires a bag to hold their medical device/supplies does not actually want a bag that screams "look I have a medical condition". I have seen most ditch the medical bag in favor of adapting a regular bag to meet their needs.
However, if you are Jonzie or another munchie you more likely "need" the medical advice to let other people know you are super special and oh so sick (not because you actually are). Jonzie could probably easily adapt her silly lion guard backpack meant for a 5 year old to hold her pump. But instead she will just start to carry two backpacks around - one that screams small child and one that screams "Im sick".

>>382764
Why is she surprised that a dietician working for a medical supply company knows how to do her job? Or is jonzie just stumped that someone else didn't find her so super sick and complex. She probably expected them to be confused by her "unique needs"

No. 382807

>>382801

My current GI CNS (basically, a nurse who has also dietitian training and specializes in GI issues), who is absolutely brilliant, did that job for a while. I've asked her what she would define as a complex case. Her response: "Complex cases are virtually always either the very young, the very old or the very sick - babies, the elderly who need to be tube fed due to dysphagia subsequent to CNS issues and people with e.g. cancer who need tube feedings as they cannot retain food due to persistent nausea but need to get their calories, especially people with malignancies in the gastrointestinal system. Perhaps the most challenging case I ever came across involved a young child with Lennox-Gastaut whose meds required a particular amount of calories after administration, so we had to work out how to best do that while avoiding the weight gain that comes with antiepileptics".

(For non-medfags, Lennox-Gastaut is a form of intractable epilepsy + mental retardation)

No. 382810

>>382744
>>382723
I have read the Vogmask website. This mask seems to offer protection for people working on construction sites (particles, mold, dust) but "does not eliminate the risk of illness, disease, or infection."

So…why? I really don't understand except that they come in cute colors?

No. 382831

>>382810
because people see what appears to be some kind of special medical mask and assume that the person wearing it must be sooper sick.

No. 382834

>>382810
As I mentioned in the previous thread, they would be really useful for illness prevention if these people would sew a carbon filter layer into the inside the masks (like the output valve holds to filter the wearer's breath). This would filter smaller particles of what they breathe in and the masks would then be PERFECT for creating a little more protection from illness. But most of these people are too lazy to do that, scientifically incompetent to realize that the carbon filter would filter smaller particles than a piece of cotton, and don't actually care that the masks don't work because "look at me, I am sooper speshul sick and have to wear a mask!"

No. 382840

just so everyone knows carmel is stealing symptoms from one person in particular and she's a really bad actress

No. 382842

>>382840
Detsssss please

No. 382843

>>382840

Yes, please spill!

No. 382844

>>382842
that person is me. sadly i can't provide much milk without waving around a huge flag that says look who i am. i prefer my anonymity online and instagram as much as possible and i come here a lot to vent (particularly about this issue) because it's creepy and unsettling that she's a mish mash failed attempt at a carbon copy of…me. admin PLEASE don't ban me for selfposting. i'm saging this.

No. 382845

>>382834

It's something they picked up from people on severe immunosuppressants and post-BMT. Most of them wear surgical masks which are not much more effective tbh, as well as cotton gloves to avoid skin borne pathogens. The only medically appropriate use of a vogmask would be for asthmatics who are working in a high pollution or dusty environment.

No. 382855

>>382834
I remember reading your post about carbon filters now. And if I understand correctly, you're saying that the Vogmask protects people from the wearer's breath, but does very little to protect the breather from airborne contagions without a full carbon filter?

That's funny.

No. 382862

>>382799
Seconded. The only reasons to not try and cram those calories in at night are being an aspiration risk and being a munchie. Day only tube feeding draws attention, increase risk of ripping it out, and even waste energy carting it around. This girl talked extensively about how she woke up with "low" glucose, there's no way we wouldn't have heard about frequent pump alarms and pain from pulling at night.

No. 382873

I have a slight suspission that jonzie might be lurking… both me and my friend have been blocked from her page out of the blue

No. 382875

>>382873
id have no doubt shes lurking, this isnt her first rodeo

No. 382876

>>382873

I wonder if she reads what people of her and has any remorse .e..g for trying to dress like a cancee patient,

No. 382879

>>382844

Ugh, she's a creep. She wants rhe tube still.

No. 382882

>>382879
funnily enough i don't and have never had a tube and for some reason she's still copied my entire illness trajectory (she deleted me off instagram a little bit ago – she probably got what she needed and left).

No. 382884

>>382876
Doubt it. She most likely just feels victimised because that's all she's ever tried to be. If she could milk it for more attention and asspats she'd be plastering vagueposts all over her Instagram and Facebook groups about how she's a victim of obsessive stalker bullies who hate her for being so widdle and sick and full of big scary tubie-woobies and ouchy tummies.

No. 382889

>>382882
She's probably trying to one-up you as her goal is to be the sickest.

No. 382890

>>382889
she has to compete with her family and the 50 or so foster kids in and out of her life. it makes total sense shes a munchie begging for best most ~inspiring~ chronically ill fighter

No. 382894

>>382889
i can tell you almost guaranteed she's angling for some kind of gyno emergency with that mirena. she didn't even change the order of her symptoms so they weren't how mine happened.

No. 382901

>>382315
but doesn't inserting a catheter run the risk of infection? How do people insert a catheter multiple times a day safely or for long periods of time?

No. 382915

>>382873
Are you saying she knows you are on here or is she just deleting people?

No. 382926

>>382876

Jonzie has been aware of this thread for a while I believe. She does seem to be more selective about who she is accepting to her current IG, which I believe used to be her personal one.
I am not really sure that she actually cares a ton about what is said about her online. While other munchies seem to want internet validation, she seems to want to present herself as the sickest child ever to people she actually interacts with. Its almost like she has created some sort of sick fantasy in her head that she is trying to make come true. She only deleted her last IG after her posts started to have real life consequences that were ruining her fantasy (because people started calling her out and contacting her doctors/treatment center). Her old fantasy seems to be destroyed and she is trying to build a new one using different illnesses. She is probably only being more selective because she wants to avoid people noticing her errors/calling her out and possibly ruining the new fantasy she is building herself.

No. 382930

>>382845

It can also be useful if you're sensitive to smoke or perfume. But wearing them 24/7 is definitely not necessary.

No. 382931

>>382763
Oh dyingto_eat is following her. Not surprised

No. 382940

>>381725
Yeah @andiesjourney faked like that too! She did it multiple times over the years. First saying she was in a bad car accident, then she had a muscle disease shutting her body down, leukaemia, muscle disease thing again, then kidney/brain cancer. But recently she got caught by some people on Facebook so totally wiped out her followers on instagram. Idk if that's even her account still. But I'm dying for some milk. Her fb was the best….. and it was so obvious she lied but so many people were so clueless!! People have given her thousands of dollars over the years. It's disgusting.

No. 382945

File: 1504065308850.jpg (123.3 KB, 600x600, IMG_2281.JPG)

Hates change but changes every specialist??

No. 383003

>>382901

No, it doesn't. You might be able to find more information on this by googling 'clean intermittent self-catheterization' but by using single-use disposable catheters and a clean technique, it's perfectly possible as long as you have some ability to relax your sphincter, and if you don't, there's ways to get around that. It is not hugely pleasant but beats kidney failure or constant pain from a bladder near bursting.

No. 383016

Did anyone see in Jaquie's vlog that she was kinda disappointed her GI dr didn't think that she was actually something wrong with her precious button? I bet she wanted an ER visit.

No. 383033

Holy shit. I guess I've been living under a rock because I JUST watched my first freylife video and Jesus Christ jaquci can fuck off. I'm so mad…seriously why don't you just Copy everything jaquie!!!

No. 383055

>>383033
My favorite Mary Does It First are the videos where Mary (who has CF) tries to clean the bathroom and starts hacking up a lung and has to stop and she says she just wants to be able to do normal things and then Jaquie tries to clean the bathroom and can't breathe and has to stop and she says she just wants to be able to do normal things, but asthma, y'all.

I know Jaquie follows Mary because in a port video awhile ago, she mentions Mary's video about accessing a port.

No. 383070

Janiece needs a wheelchair now, bless her heart. She will be using a wheelchair bc of stomach pains and intestinal pains. And she's bedridden now and in so much pain she can't move. She has been diagnosed with gastritis and got meds and her doc says she can stop taking them if she gets better. [eye roll]

No. 383074

>>383070
a wheelchair for gastritis, that sure is a new level of munchie!

No. 383076

>>383055
At this point Jackie just about deserves her own thread

No. 383081

>>383070


I watched the video and holy crap why do all these munchies have the same whiny voice?

It's gastritis, you'll get over it.

No. 383083

>>383081
Take a damn antacid.

No. 383085

>>383070
Can you link please ?

No. 383089

>>383085
If you can stand it, Janiece's colonoscopy "fail" video:
https://www.youtube.com/watch?v=O_NKfutmCnA

Then the recent need-a-wheelchair video:
https://www.youtube.com/watch?v=FlZKAFrh8eA

No. 383096

>>383089
Does she ever move her face?

No. 383109

>>383089
Oh my lord. And her husband with fucking CHROHNS just sitting there. At one point in the first one she tells him he's lucky to have chrohns and not be "complicated and have so many things wrong with him"(paraphrasing) as her eye roll.

No. 383114

Jaquie eating deep fried food after her GI appt is totally hilariously ironic.

No. 383115

File: 1504102442924.png (27.9 KB, 750x176, IMG_1523.PNG)

it's like they plan for this shit

No. 383118

>>382894
Yeah I reckon she'll claim she has every side effect and suddenly develop acute pelvic pain. What are the odds the mirena will either "get lost" in her uterus, or embed itself and she'll go running to A&E. I also have a suspicion she'll begin bleeding herself a la Kelly style and blame it on the mirena causing blood loss, before demanding a transfusion.

No. 383120

>>383109

Janice is like Jaquie ultra-light version. Except her husband doesn't seem like the kind of person who would play along for a significant amount of time. I hope she doesn't fall down the munchie rabbit hole, it looks like she's not quite convinced of herself either.

No. 383121

>>383118
if she continues to be a carbon copy of me she's gonna have to GASP GASP get better at some point because i'm managing 90% of my symptoms and have started to get back to my life. probably why she deleted me on ig. i got too boring. i mean better.(USER HAS BEEN PUT OUT TO PASTURE)

No. 383134

>>383121

She probably will. My copycats stopped copying me when I started getting the care I needed and started getting better. They don't want to get better because it's not interesting.

No. 383144

>>383134
i can't find the comment right now but she talked about "bleeding for 3 months straight" or something on one of her posts. she doesn't even try to hide her single white femaling me.

No. 383147

>>383089

pots is not a heart condition Janice. It's not.

No. 383149

jaquie is getting ketamine now what the flying fuck

No. 383151

>>383147
Yeah that drove me fucking nuts in the colonoscopy vid. Lady it's a software issue, not the hardware. Your heart is fine. The only reason to ever call it a heart condition is if you are a) trying to make it sound more serious than it is b) have to explain it to someone who doesn't understand what the ANS is. So uh stop telling doctors (who obvs know what the ANS is) that you have a fucking heart condition!

Personal example : only time I have ever described POTS as a heart condition is to a landlord who was refusing to fix my AC in 90 degree heat because it wasn't June yet

Sages for blogging

No. 383156

>>383149
Oh great another crazy expensive treatment with tons of side effects

No. 383159

>>383156
how does this certified cunt get ivig and ketamine and a custom wheelchair and legitimately sick people can't even get insurance approval for surgery without jumping through obstacle courses?

No. 383163

"ketamine is a common and safe anesthetic."-chronically stupid…i mean jaquie

No. 383165

>>383159
Because daddy pays for stuff insurance won't

No. 383166

>>383149

Why does she fucking need that?

No. 383178

>>383166
the lil motherfucker says so she can safely get lidocaine injections in her neck that she has to be sedated for

No. 383186

I've gotten 30+ lidocaine injections in my head while fully awake. Why does she need to be sedated?

No. 383189

>>383121

Sorry to hear you're getting better. You fail as a spoonie. You will be stripped of your silver insta spoon. You will lose followers and start gaining real friends. You will get fewer likes and more hobbies. Sorry, I'm sad for you. Hugs!!!

No. 383194

>>383189
i'm laughing so hard. all of this shit has happened to me over the last couple months, anon. lost 20+ followers when i started posting about my hobbies, started getting back in touch with my old friends, and i get like 14 likes on average now.

No. 383196

>>383186
i would like to be sedated instead of watching her videos for science (milk)

No. 383198

File: 1504109852548.png (215.89 KB, 750x1127, IMG_2283.PNG)

The creepy twins both got food poisoning…. deliberate?

No. 383199

legit question for the medfags here (saged for my stupidity) what's the difference between these munchies and someone with say, BIID? these munchies seem to have varying degrees of BIID in a sense that they can only see themselves as ill. someone jump in and correct me.

No. 383206

>>383186
She's super speshul. She's very sick and has lots of problems.

No. 383208

Jaquie must be so mad and jealous that Mary Frey can eat. I think that's why she tries to eat.

No. 383212

>>383208
I think she's more mad at the fact that this is her first medical accessory that comes with calories.
She wants eating to appear like a valiant effort to appear normal, but really she just looks like a pig. Eating junk food on top of tube feeds isn't brave, it's stupid, and the consequences are starting to show for once. Mary actually wants to eat and needs feeds for EXTRA calories, for jacquie the calories are an unpleasant side-effect.

No. 383213

>>383198
Maybe I'm just desensitized, but why would you call an ambulance for food poisoning…?

No. 383219

>>383208
God, I feel so bad for Mary, that she has to keep up with these idiots. Ive watched their YT Channel for a while and she is just the sweetest human being ever. And she actually suffers hard from the conditions she has through CF.

>>383213
Well, a lot of people dont understand the concept of ambulances.
>We called an ambulance and they refused.
I like that lmao. Ambulance are for people that are in a life-threatening situation or cant for whatever reason not use public transportation (taxi included) safely because they might bleed out or go into cardiac arrest and stuff or are not able to walk.
As you see they were able to make it into the ER.

No. 383224

>>383219
It's funny how they seem to imply that the 911 dispatch did something wrong/should've sent an ambulance. There are qualified medical staff that make the call on whether or not to dispatch an ambulance, at least where I live.

No. 383266

>>383212
Why doesn't she just not run the feeds then? Nobody is forcing her.

No. 383271

>>383266
she's jealous of mary so she gorges herself on disgusting food. she could probably eat without the tube if she ate the right food but she refuses to do that.

No. 383315

>>383210
Yes - Jaquie has mentioned Mary in at least one prior vlog. I think Jaquie learned all about ports from Mary. Jaquie's vlogs seem to mirror Mary's at times. Of course, Mary either has no idea or hasn't mentioned it. Maybe she rolls her eyes in private.

No. 383325

I can't stand the way that Jaquie absolutely glows when she is talking about new treatments, toys etc. It's the only time she ever gets animated about anything.
Curious - did she have the disclaimer about needing to be sedated for neck stabilization for her shots in her video earlier today or has she added that after, I don't know, reading here? I usually watch much earlier in the day but today didn't get around to it until late afternoon.
Judd is so over it. He's been home for two days but barely present in the videos and when he is it is so obvious how fed up he is.

No. 383328

>>383144
She probably had spotting for a while and decided to hype it up. Glad you're getting better, anon!

No. 383340

has anyone seen Janieces new video my god , so shes excited to be going to the hospital for back to back testing tomorrow , she heard it MAY possibly be her gall bladder and jumped straight to it being removed when the dr said they are ruling it out ., she has super special insurance which will cover the same wheelchair as Jaquie .

No. 383342

>>383199

I'm not a shrink and I don't know a lot about BIID, but the wife wrote her doctoral thesis on body dysmorphias, including BIID. Which, quite frankly, is the sort of shit that makes me grateful I didn't end up in shrink school and instead get to dig in your intestines.

The difference is, more or less, that people with BIID have a specific difference between themselves as they are and themselves as they ought to be. A BIID sufferer who wants to be an amputee would not, for instance, be in any way satisfied if he were to suffer a spinal cord injury turning him into a paraplegic. For a Munchie, sympathy matters, and they'd give themselves the bubonic fucking plague if that were the last way they could experience sympathy. The two groups touch somewhat as there are some (not all) with BIID to whom helplessness and needing to be cared for is a principal attraction, just as Munchies need that desire fed (hi, Jonzie!). However, in general, BIID sufferers don't want to be seen as heroic or brace, they just want their leg chopped off or whatever, and tend to stop there, whereas Munchies collect new and exciting diseases forever. Finally, it is apparently relatively rare for BIID to involve cravings for procedures, medication, hospital stays and implanted devices and tubes.

Sage for medfagging.

No. 383346

>>383340
I am in the middle of the second newest one and had to pause it to come and here and rage bc oh my fuck. Janiece wants ice cream with hot fudge after supposedly being in bed for two days and needing a wheel chair due to pain. Paul says um, if crackers and water hurt your stomach you can't have ice cream. Thank God for some sense instead of just an enabler but seriously??? What is with these Chronically vloggers who claim stomach issues but eat pure junk and want all the med toys and the drs appts? I can only imagine Judd and Paul's private conversations. Like, dude, how in the hell did both our lives turn into this?
Sage for fuckery.

No. 383350

What the actual fuck?! In Janeice's vlog, she just said she was excited about being in the hospital all day tomorrow for testing.

No. 383353

>>383340

I was so incensed, i basically said the same thing as you. Munchie see as munchie do, I guess.

No. 383357

>>379077
>>383353

Jaquie and Janiece make a good munchie pair.

No. 383358

>>383315
Notice that unlike most of the people who watch Frey life she doesn't interact with her, like offer compassion/support/feedback like everybody else. She just mirrors her with her vlogs, instead of demonstrating that she cares at all about Mary

No. 383360

>>383358

Samefag but on that note, she's never really indicated that she cares about anybody else at all.

No. 383364

Janiece seems pretty high energy and vocal for someone in excruciating pain. Some of the pain charts posted here by the medfags say that not being able to talk through pain indicates pain level. She won't shut up. Not buying it. She wants to be like Jaquie who wants to be like Mary and it's just this twisted circle of weird idolization.

No. 383369

Mary regularly chats with other YouTube users who have chronic illnesses and offers them support. Especially people who have service dogs. Considering the fact that jaquie has a service dog, port, IVIG, GP and a J tube, which they have in common, if she believed a word of it she would have spoken to her.

No. 383373

>>383360
It's bizzare really. Even the way she interacts with her parents is incredibly abnormal, even for someone on the spectrum.

No. 383378

What really gets me is how obsessed she is with saying the name of every illness over and over again.

'The pain I have due to my Ehlers Dalhos Syndrome'
'The stomach pain due to my Gastroparisis.'

FFS just say I've got a stomach ache and get it over with. We know that you claim to be sick, you don't have to tell us every five minutes. Oh, and it's a wheelchair. Who gives a fuck if it's a custom one.

No. 383379

>>383378
She's the same when she goes on about her 'feeding tube and her nutrition! She could jut say 'tube' and 'feed'

No. 383384

>>383379
Every time she says "nutrition", I want to punch the screen.

No. 383385

She only wanted to come up with a name for it because Mary did.

It's called feed for fucks sake.

No. 383386

>>383373
How does she interact with her parents in a way that's bizarre? Just curious because I've never even witnessed her interact with them and don't feel like going through all her videos to find one they're in

No. 383388

>>383386
I was just about to ask. I'm really curious too.

No. 383392

>>383360
Because she doesn't care about anyone else. She's a selfish attention whore who doesn't need a wheelchair or a feeding tube or anything of the other "toys" daddy's bought for her

No. 383395

>>383271
She can eat whatever she wants. You don't get that chub from only eating a little bit and throwing it up, especially since she "can't tolerate" her feeds and rarely runs them. If she has GP at all, it's very, very mild.

No. 383397

>>383386
She's VERY rude to her mother, sometimes she treats the woman like she's a giant idiot. She also seems to not really give a shit about her. Her mother's first language was is Spanish, but Jaquie doesn't know ANY, her mom cooks quite a bit of venezualen(not 100%) and Jaquie can't make anything even though she says she's always loved cooking. She acts like she doesn't really care about her dad. She will bring him up and talk about his stroke/hearing loss but she never really mentions him. She always seems to look at the camera when she does things like hug them, like it's just a display. She doesn't talk to them like they're parents, she talks to them like she's obligated to.

Just my opinions, I could be wrong.

No. 383398

>>383397
Because she's an entitled, spoiled brat who was probably raised like the world revolved around her, and now she's too old for that so she's gone full munchie.

No. 383399

>>383397
She mentions her Dad when she talks about how she's lived all over the world, but that's about it other than his stroke/hearing loss.

No. 383401

"i just want to improve my quality of life"
also, "ehlers danlos syndrome warrior" sounds ridiculous when you say it out loud.

No. 383416

I'm sorry, but calling yourself a warrior because you have a chronic illness is just plain stupid. I have a few chronic illnesses that take a fair amount of time and effort to manage, but am I a warrior, fuck no. I don't have a shield and a suit of armour, just a well stocked meds cupboard and a wheelchair. That's right, a wheelchair. Not a 'custom wheelchair'. Gosh. I must be so ordinary.

No. 383422

>>383401
She seems to have really latched onto the "quality of life" phrase when she talks to health professionals - I think she may have realized they like hearing that and are then more inclined to provide what she wants.

No. 383424

>>383422
For QOL she really needs to walk around the block a few times and ditch her junk food. I can't wait for her supposed upcoming appointment with an actual dietitian.

No. 383426

File: 1504132913825.png (132.55 KB, 750x1334, IMG_0680.PNG)

"AS long as four months" uh- balloons can last up to 6 months and if you take good care of them, longer. And she's not super special for having to go under a scope to replace them. That's doctor preference and very common.

No. 383427

It's crazy to watch Jacquie compared to The Frey Life. I started watching Jacquie first and the similarities are obvious but the differences are perhaps more striking. Mary makes consistent efforts to preventing deconditioning and she's seen even exercising and stretching in hospital after having her NJ put in. Mary seems to take the stewardship of her body very seriously. Jacquie, obviously, does none of this. She'd be a lot better off if she copied some of Mary's other qualities.

No. 383428

>>383416
Any other diary entries you'd like to share? And without saging?

No. 383431

>>383416
Tbf custom wheelchairs are much comfier and easier to use than ordinary ones.

You should try it. The cute colors are just a bonus.

No. 383438

>>383427
Mary actually has a disease, Jacquie doesn't…

No. 383446

>>383426
>>383426
Isn't this a question for your doctor? Oh wait, that won't get you the sympathy and attention of strangers on the internet. Facebook it is!

No. 383448

>>383416
Please, tell us more about your fascinating life and how you're nothing like the other spoonies thatbpost all over the internet

No. 383451

>>383438
Understand, though didn't express that well.
It just seems like it could be another angle Jacquie could play if she wasn't so lazy. I can see her playing it similar to how her rest angle is but like, "I have to exercise in this special way because I'm sooooo sick but muscle strength is soooo important."

Jacquie also mentions in today's vlog that she won't try medical marijuana because she could get high and doesn't want that. However, she's also now interested in ketamine. It sounds like the stuff she's getting will be quick but you do get high off ketamine. I dated a girl who did ketamine infusions as an experimental treatment for chronic pain (who, now, I don't know if was a Munchie or not, honestly) but she really had some weird hallucinations on it. From my knowledge, infusions like that are fairly common as an experimental option so I wonder how long until Jaq decides that is going to be her new thing.

No. 383461

Mary's changed her intro music. What's the betting Jaquie does the same?

No. 383468

>>383451
Jacquie wouldn't be in pain like she is if she was just more active. Her muscles are probably atrophying at this point.

No. 383469

>>383468

I don't understand why she can't get her own damn blanket. It annoys me every time. She can easily walk across a room.

No. 383470

>>383468

Ehhh. Unlikely. She does enough incidental moving that, considering she has no pathological factor destroying her muscles, she should retain a normal if sedentary amount of muscle pack.

Actual pathological muscle wasting is a lot more alarming than going flabby, and hurts a lot more. She's fine.

No. 383481

>>383369
The Mary Frey asslicking in this thread is embarrassing. To the CF community, she is almost a Jaquie - she doesn't take good care of herself, she has struggled with an undisclosed ED, she's a horrible representative for any illness. Don't let Jaquie's total fakery fool you into thinking there's anything good about the Freys.

On GG, there's a full thread on them where people (including CFers) are stupidly citing Jaq as a good example whom Mary should be following, at least attitude wise, which shows how easy it is to be fooled. Mary is not a munchie, we all know that. Doesn't mean her social presence is in any way positive or contributory for CFers.

No. 383482

No one's claiming that she's an angel without faults. She has them,everyone does. What we are saying is that Jaquie is blatantly copying her.

No. 383484

>>383482
Of course Jaq is copying her, we all know that. But that's not all that's being said, read the thread. Mary is being praised because people here don't know much about CF and/or aren't CFers. All I'm saying is, Mary isn't a role model, isn't a good example, also exacerbated and worsened her illness in the past, and is widely disliked by those with the same illness. The Reddit CF sub also discussed the Frey Life and broadly agreed.

No. 383487

>>383484

Mary is actually legit sick though, compared to Jaquie. I'm not a particular fan of the Frey Life but you cannot deny that Jaquie copies their every move.

No. 383489

>>383484

Sorry ignore me. I misread what you had written.

No. 383493

>>383487
I agree, I really can't stand any so-called spoonie who puts their illness all over social media, whether they're legitimately sick or not. But on here it's more the comparison that mary is actually sick, and Jacquie is not, and is just a malingerer who's even more over the top.

No. 383495

>>383493
Using any illness (real or not) for attention is weird and tacky

No. 383497

>>383481
What's gg?

No. 383498

Yeah I came here to say about the same thing. Mary has done much of the same stuff as Jaquie - she got a tube she didn't need (after purposefully vomiting up her NJ), over-exaggerates every tiny ouchie and tummy ache, abuses her enabling husband, and demands that she be the recipient of 100% of the attention 100% of the time. She's a munchie through and through, with or without CF. The Frey's also sell useless "merch" and have a service dog, except their service dog is nothing more than a pet while Jaquie's at least seems trained. Mary's CF is tragic, but the real tragedy is watching her cover up her ED with CF and refuse to live what life she does have to the fullest extent that she can. Jaquie is a true cow, but Mary isn't too far behind.

No. 383499

>>383497
Guru Gossip

No. 383503

>>383498
Do all spoonies have eating disorders? Or just the really attention-whorey ones? Between Jacquie, Carmel, Mary, MLS, JBN, it seems like most of then just have eating disorders. Mary may actually be sick but definitely an ed as well. Go to a therapist, people, and stop munchying around.

No. 383505

I'm not convinced that mary does. CFers have shit loads stacked against them when it comes to gaining and maintaining weight. Yeah, she could run her feeds more and try and eat higher calorie foods, but CF can cause both of those things to become very difficult.

No. 383523

>>383505
All the people who think she has one are very familiar with CF. seriously, please read the Guru Gossiper thread if you want a list of examples of her (very) disordered eating. It's not too long but there's too much to repost it all here.

No. 383524

CFers have a higher incidence of ED's compared to the general population. Mary is a perfect example of this, and CF is a perfect alibi for why she only eats raspberries and refuses to run her feeds - even after BEGGING for a tube. The Frey'a deserve their own thread, honestly.

No. 383525

>>383523
The GG thread is 39 pages and 965 posts. Can you narrow it down a bit? Like where in the thread is the ED milk?

No. 383527

>>383525
It's strewn throughout the thread. If you skim, probably starting about halfway through, you'll see it. Her ED is a common topic there, especially over the last few months or so since she did the whole Jaquie beg for a tube fiasco that munchies seem to love to do

No. 383540

>>382451
Exactly. The only illness that I feel you could use the term "fight" against is mental illness, because it's an illness that isn't solely medication reliant wrt treatment.
It's not like simply adhering to a medication regime will alleviate the symptoms, unlike most physical ailments. It takes a lot of work trying to overcome intangible issues and that really is a struggle.
But even then I feel like the term "fight" is too loaded- like you said, is someone who can't overcome illness at fault for not fighting hard enough? Should we blame people for not being as resilient as someone else?
TBH, as much as I think the term is overused, I think the whole thing can veer into the realm of victim blaming really easily.
Can you imagine being the parent of a kid who died from cancer seeing how the one that survives is praised for fighting hard enough to survive?
Because there's definitely an implication that their child just didn't fight hard enough, regardless if it's unintentional.
It's really toxic thinking imho

saged for pondering

No. 383547

File: 1504151824286.png (213.43 KB, 750x1097, IMG_2295.PNG)

Does anyone know this ones "personal account"?? she mentioned in a post that she was so happy with the likes she got on it, but no link. Seems like it would be where the milk is hiding.

No. 383548

File: 1504151957710.png (174.3 KB, 750x1122, IMG_2297.PNG)

>>382931
Yay more toobs

No. 383549

File: 1504152024839.png (175.95 KB, 750x1125, IMG_2296.PNG)

This sounds like regular person stuff but apparently it's a special EDS thing…

No. 383550

File: 1504152084529.png (192.01 KB, 750x1217, IMG_2298.PNG)

WTF

No. 383553

File: 1504152141378.png (202.28 KB, 749x1153, IMG_2299.PNG)

Okay this one seems pretty munchie but I haven't been able to tell if she legit or not?

No. 383554

File: 1504152249795.png (96.15 KB, 750x989, IMG_2265.PNG)

When munchies do their research on IG

No. 383557

>>383426
Buttons (with J portions) last as long as they flush to the place they're supposed to.
It can be over a year…two years…until it pulls out basically. It's expensive and harmful to replace.

No. 383564

>>383547
EDS AND Marfan's?! Damn, this girl has "won" the genetic lottery. Is this even possible? Like… one in a trillion?

No. 383569

>>383194
hi veds girl
you might wanna avoid posting an anonymous post here that is ridiculously close to a post you made on Insta ?(?)

No. 383623

>>383564
A diagnosis of Marfans excludes HEDS/EDS3 which is the most common (and the most overdiagnosed as it's lumped in with benign hypermobility). And I'm pretty sure if she had a different EDS type - which means, a rarer type - she would tell us that type. So I call BS on that.

No. 383626

>>383147

That was basically what I was screaming at the screen when I saw that vid.

And come on, if you think you're a special case and need special consideration, you just call ahead and ask if that's gonna be a problem, like us grown-ups do. You don't go there without contacting them first and make a scene.

Also, if sedation is going to be such a Very Big Problem for you, it's totally possible to be scoped without it. Where I live that's more common for gastro- than coloscopy, but it's certainly possible. For the colo- they can give you IV fentanyl if it's too painful (gastroscopy isn't even painful, just hugely uncomfortable for a whole of five minutes. Boohoo. I would recommend sedation if you panic easily, if you don't, it's not even worth it imho).

No. 383631

>>382762
See, what I don't get is how draining her stomach before eating is helping her. If you drain stomach juices and eat right after, wouldn't your stomach work WORSE? Can anyone enlighten us?

No. 383635

>>383089
I've never seen someone so happy to be at the hospital before. I hate going there even when I've been really unwell and had to go. I can't understand that. Also how can you be so happy when you're in pain? confusing..

No. 383641

>>383635

Wow. I'm watching her most recent video
https://www.youtube.com/watch?v=lOe-MgQroB8

Had to pause it just to come here. She literally says she is 'ecstatic' at getting al kinds of tests, is talking about possibly having her galbladder removed and calls that "removing another body part" because she already had her appendix out, and says "that would be fun".

What?? What am I even looking at?

No. 383648

>>383553
This seems pretty self post-y honestly. To be fair she is friends with @Richelle_Elissa who'd give carmel a run for Aussie Munchie Queen so her being munchie or very OTT spoonie is possible..

No. 383651

Mary Frey suspicious ED behavior condensed summary: Mary began losing weight rapidly at the end of last year/beginning of this year. Her lung function began to decline. Her CF "team' decided an NJ tube would be a good choice.

The NJ is placed during an admission and is "coughed up" before the week is out. Shortly thereafter, another NJ is placed. Mary continues to lose weight. Alludes to vomiting off-camera (and letting her husband clean it up) and picking at food on camera. Despite being so ill that she needs supplemental feeding, Mary does daily handstands and yoga which exacerbate symptoms. Vomiting incidents increase with coughing spells and the second NJ is thrown up before the month is out.

Care team decides a J-tube would be beneficial. The surgery takes place during a month long admission and with the help of a pain pump. Another month goes by before Mary actually starts using the damn thing because "pain, healing," and "gastroparesis." When she finally does begin, she is extremely sporadic with her feeds (which are meant to be 24/7), and often takes "breaks" some of which last for days on end.

Despite being told to take in as many calories as possible orally, her and her husband Peter never order more than one serving of food or drink (despite him being a grown man), she never eats anything that isn't fruit, and if she does it conveniently gets coughed/vomited back up.

So, despite being a tubie for the better part of a year, Mary has gained little to no weight, and is happily wasting away under the guise of being a "CF Warrior." This is to say nothing as to the status of her absolutely useless service dog, her doormat husband, or her bad hygiene.

No. 383684

>>383626

I scope people for a living. I'm as close as someone can get to being an endoscope/endosurgery nerd. I have, according to my assistants, seen at least a third of $town_where_i_live from the inside.

So based on that…

1) there is no medical indication for sedating for a scope. We don't get better images, we don't get done faster and we sure don't get fewer incidents. In fact, all scope deaths I've ever heard of (nobody died under my hands in the last decade or so of scoping, knock on wood) happened under sedation, but I cannot find you a reference to corroborate a greater risk.
2) I don't routinely sedate for upper scopes. I will now admit to a bit of sexism and say that if the patient is female and looks very uneasy, I will allude to the fact that she might not want to be awake and by her senses for this, for obvious reasons.
3) I have been scoped while awake and scoped my colleagues while awake, it's what we do for fun and education. Nobody so far said it was horrifically painful, even those with very abnormal anatomies (that would be me, among others).
4) My offer to patients tends to be pain relief OR sedation, and they only get both if there's a documented reason. Which there's hardly ever. Pain relief, btw, is mostly an injectable NSAID, unless you're opioid tolerant, in which case it's 100mcg fent. So never much of a hit.
5) Where the indication involves helping to diagnose a gastric or gut motility issue, I normally ask for a morning admission NPO and scope in the afternoon, to make sure most of the polypharmacy these people are on is flushed from their system. Furthermore, if you are going to get scoped by me for dx of a GI motility issue, your drug options include ketorolac with special consent and your doctor's approval,, ibuprofen or a single .5mg alprazolam p.o. half an hour before the procedure. Everything else has some level of anticholinergic or muergic activity that interferes with accurate diagnosis. Don't like it, get another person to scope you (which usually means another hospital).
6) As a routine, and again, in a very un-PC manner, I do not like doing scopes on people with a BMI >= 35 to begin with, and people above BMI >=40 do not get any tubes or any other interventional stuff unless I see an approval from a cardiologist and a dietitian. If the cardiologist says so much as a heart murmur, I will go back to her GI or whoever referred her and explain that endoscopy is not a safe procedure for this patient, and most GIs understand this and will be able to tell the patient that right now, the risks outweigh the benefits from a tube, try again later, do not collect £200.

Am I an asshole? Yes. Does it help avoiding preventable deaths in endoscopy because of sedatives, polypharmacy and being fat? Ya bet my Hebrew ass.

No. 383685

>>383557

Why harmful? I get expensive, but most gastros where I work tend to argue that it decreases bacterial colonisation. Sick person with a tube comes in testing poz for anything intestinal, the first thing GIs here love to do is change tubes and clean stoma.

No. 383705

>>383684
So have you seen Janice's vid, “endo- and colonscopy epic fail”, or whatever it's called? She went to her appt., all prepped and all, and 'advocated' after which she went away without being scoped because it was an outpatient assembly-line type of place where she would have to leave immediately after waking up, while she said they where not allowed to wake her up b/c of her narcolepsy and it might take her hours to wake up by herself.

I’m the anon that said it's totally possible to be scoped without sedation btw, so I agree with you that there's no medical reason to sedate. Patient comfort maybe for lower scope especially in IBD patients, but upper? Imo it's not even worth it, you have to arrange transport and everything as you're not allowed to drive yourself for a whole day(!)

So WHY doesn't this doc offer her to just go ahead without sedation? Especially as she's al prepped for the lower scope, which many people say is the worst part of the whole procedure.
(And don't say the doc offered her and she didn't tell us, 'cause I bet ya she would've told her viewers that offer and all about how that was totally rude and inappropriate! Which, OK, might answer the question why the doc didn't offer it to her. I'll shut up now.)

For what it's worth it: I don't think you're an asshole. I like my docs to be direct and practical. Saves time.

No. 383708

>>383705
I'll give you the link.
https://www.youtube.com/watch?v=O_NKfutmCnA

Saged, because it was linked before. Also, it's a very long one. I couldn't watch it to the end, and I'm considered to be a very patient person.

I'm glad though that on her latest vid she was called out by people that said that as an adult woman, wining is not considered to be 'advocating'. LOL. Also, did anyone notice that in her video yesterday (or was it today, I forget) she said "let's go and advocate" before she went to hospital? So she's EXPECTING to encounter a situation in which she has to 'advocate'.. (Rolls eyes)

No. 383709

>>383481
This is interesting, can you explain more? I haven't heard of anything like you stated and wouldn't know what to look for either. (I'll go check out the /r/ and etc.)

sage for ignorance

No. 383710

>>383557
Hers won't last as long, though. She's gonna need a new size soon ;-)

No. 383712

>>383651

Those are all things that bothered me, too. The exercise especially.

People have said "eating disorder" a lot in relation to Mary, but which one? There's also OSFED, ARFID and SED, and being mental illnesses there isn't a reliable way to know Mary's motivation behind her behaviors related to food (anxiety about eating something that might make her sick vs. being scared of gaining weight/wanting to lose weight).

sage for possible EDfagging

No. 383713

>>383710
kek exactly what I was thinking, I hope her doctor says it first.

No. 383718

File: 1504188923553.jpg (70.85 KB, 420x294, t2PzjUt.jpg)

I hope I posted that photo right.

According to this hospitalist (http://thehappyhospitalist.blogspot.nl/2010/04/my-shortest-hospital-discharge-summary.html), claiming 12/10 pain while talking on one's phone is considered the "discharge sign". I think the same should go for vlogging, what do y'all think? Not necessary for vlogging in hospital during lenghty stays per se, but definitely for vlogging while claiming 12/10 pain.

Or anything above 7/10, for that matter. Or vlogging in the ER.

No. 383721

>>383709
What would you like to know more about? The summary upthread of her ED behaviours and poor self care is a good overview, and the thread on Guru Gossiper gives lots of specific examples (exposing herself to infection risks, not eating appropriately, excessively seeking attention, etc).

No. 383726

>>383547
Jesus. Play the victim much? Plus you don't automatically die from those diseases, only marfans and vEDS is fatal, and she doesn't have the look of either of those.

No. 383728

>>383548
Why do munchies, oh oops, spoonies, get so fucking excited for new tubes and other things? It's gross to be excited that

No. 383732

>>383641
Jaquie is fucked in the head, plain and simple. She loves medical stuff she doesn't need, and gets way too much pleasure from all the attention. Textbook munchie, as well as entitled brat. She's known to cause nausea in perfectly well people just by her antics

No. 383737

Holy fuck. Please watch her newest vlog. She's going to the GI doc to see if her current feeding tube is too small because she's in so much pain recently. She hasn't even had it that long and she's already outgrowing the thing?! Is that a joke?

No. 383738

>>383737
Jacquie: "Im losing so much weight"
Jacquie also: "My tube is too small, but it's definitely because i've lost weight not gained it."

She's actually deluded herself I think

No. 383739

>>383737
Oh my god I hope it's too small. I will laugh so, so hard. Server her right.

No. 383740

>>383738
"I can't eat anything waaa" says the girl who eats tons of shit and is getting fat

No. 383741

Jaquie's neck probably wouldn't hurt as much if she didn't take so many fucking couch naps.

No. 383742

>>383738
I'm shell shocked honestly. What is this craziness. Also some more evidence at the end of her just using her parents and treating them like shit? I don't get the task at the end… I am in a wheelchair w/ mobility impairments and I can hand the cashier my wallet and or stuff I want to buy just fine. Wtf is the point of this? I get having a service dog and how they are beneficial that's not what I'm saying I just think the task itself doesn't make sense for her. Unless you literally could not lift your damn arms.

No. 383743

>>383737
Haha they measure button tubes before they order them and put them in, so it was the right size a few weeks again. I'm legit crying that is too good

No. 383744

>>383741
And if she did even a tiny bit of exercise once in a while, like a very short walk or something (anything really)

No. 383748

File: 1504192846575.jpg (Spoiler Image,59.18 KB, 580x580, IMG_0665.JPG)

>>383738
Guise my toobz is too small now lols. Gots to get me a new one.

No. 383753

>>383685

I just want to point out that NORMAL people do not have so many fucking problems when it comes to tubes and lines. If you get more than a couple infections in a year you're doing something very wrong, and even then only if you're very infection prone.

No. 383754

>>383738
I really hope her doctor takes a hint and pulls it instead of replacing it. Outgrowing a weight gain device, esp this soon after getting it is disgusting

No. 383757

>>383754
I hope so, too, but he sounds like he's already pretty clueless. Oh well, if her doc puts in another she'll just get fatter

No. 383768

>>383742
In her case, it's useless. She can both stand and lift her arms. I know several people who can neither, and they still manage to do their own shopping. Without a dog. Even those that have a service dog: letting a dog hand over your wallet to a stranger is not something normal people want to do if there's an alternative. It does make you look very disabled though, and your dog both super cute and useful.

You'll notice that she holds the clicker as high or even higher than where Harlow hands over the wallet. Proving she could just as easily hand it over herself. Not like there was any doubt about that, but still.

Also, re the button saga: that is exactly the reason why sane docs only switch a patient from the 'long tube' to a button if they reached their goal weight and are stable at that weight. Her gaining weight should not be surprising (that is, IF she would run her feeds like she's supposed to when it's meant to be 95% of her intake, which she doesn't. Not by FAR) but they should've hold off on replacing the long tube for a button.

No. 383781

>>383768
The thing is, she's already told her doctor she's not tolerating her feeds. So her weight gain should already be suspicious. And no one gains that quick off a tube feed. Gaining, yes, especially if someone was underweight before their tube, but jaquie has gained fast. That's just as irresponsible, if a doctor/dietician is signing off on that. If jaquie isn't tolerating her feeds and running them as little as she claims, and also eating very little (as she also claims), she would be losing weight, not ballooning up like she is.

No. 383782

>>383728

I mean I get excited about things that will improve my health but that is after finally deciding that I do in fact need X/y/z and there are no other options. Like it's excitement over getting to feel better, which I think is normal.

I think what the weird party about these cows is that they get excited about the equipment itself? Not the effect it will have on them (not that they need half the shit they have but still)

Don't know if this makes any sense so sage for rambling

No. 383783

>>383781
You're right, of course. It was more a reaction to the post that said that outgrowing a weight gain device (so soon) is disgusting. While most of the time, the whole point of placing a tube is to gain weight. That in and of itself is not strange. In Jaquie's case of course, that's different.

No. 383784

>>383781

Just wait until she starts complaining about being a GP gainer. I bet she will.

No. 383786

>>383503

I guess there's no way of really knowing but it's highly likely.

When a spoonie is fishing for a tube I automatically think they have an eating disorder. In eating recovery centers, the 'sickest' patients get the toobz, and everyone secretly oohs and aahs and plot how to get their own. Always assumed that's how the fascination started for a lot of them…

No. 383788

>>383782
In my opinion, it's that they get excited about having the equipment itself. And then showing it off again and again on social media. Any normal person does get excited to feel better, but these munchies are excited to be sick so they can get their precious tubes and wheelchairs and such. Function seems to be an afterthought for them (probably because it's usually things they don't need, so it's not like the actual function is improving their lives at all). Munchies love their tubes, etc. because it makes them look actually sick or sicker, and thus gets them more sympathy.

No. 383791

>>383784
Is that even a thing? Another IG munchie is claiming that, and it just seems scientifically impossible. Any medfags out there know?

No. 383793

>>383783
Jaquie is different because she's flat-out lying. She doesn't have the severe GP she claims, and needs the tube for, because she eats all sorts of shit and is obviously not throwing it all up, a la the massively quick weight gain.

No. 383795

>>383786
Ew, yeah. I saw a girl who said she desperately needed a tube, but couldn't stop eating. Instead she refused water and made them give her a tube for that. Seriously fucked up, but people with eating disorders that require that level of treatment are.

No. 383797

>>383786
Well, at least that's a way anyone could get a tube. Just refuse to eat long enough and you'll get that sweet, sweet nose hose. Of course an eating disorder is too common for today's average munchie.

No. 383801

Hi Jaquie! Glad to know you are reading here. There is no way you would have opted for chicken broth this morning instead of Oreo cereal if you weren't. Why is it that you can read your dog's body language when training but couldn't see how over it your Mom was? She was clearly aggravated by being treated like a servant while you trained your dog for something you obviously do not need. There is no reason you can't hand a cashier your wallet. There is nothing wrong with your hands. Wheelchairs will put you about level with the average check out counter top. Your need for attention is beyond sick and pathetic. Get the help you actually need. A psychiatrist.

No. 383805

How do you know she's watching?

No. 383808

Someone in a wheelchair called her out in the vlog comments for not needing to train Harlow to hand over her wallet. Hopefully someone smarter than me can post it here before it's deleted.

No. 383809

File: 1504198907575.png (101.26 KB, 1208x711, jaq.PNG)

>>383808
It's here, along with replies from her supporters. I've never heard Jaq mention hand weakness or seen any such evidence but maybe it's something she's decided is out of style for her and isn't mentioning it every 5 seconds.

No. 383814

File: 1504199077287.jpg (176.75 KB, 1489x809, XDwKbOn.jpg)

>>383809
And another one. Not sure if the one above is still there; I didn't see it.

No. 383819

>>383791
Depends on your body some people with GP do gain weight but it can like anything be regulated. Her weight gain is because she's getting way way way too many calories though.

No. 383820

>>383814
Wow those supporters are in hook, line and sinker. If she passes out or loses control that easily it would never be safe for it to just be her and Harlow unless she took public transportation. Which I have a feeling our Jaq would find a million reasons to never do. Germs, heat, cold, allergy to buses (okay now I am just being an ass but for realz…)

No. 383823

Jaquie hasn't answered herself, but always good to see she has a lot of people talking for her <sarcasm off>

The thought seems to be: sometimes she cannot lift her hands above her head. Well, you don't have to lift them above your head to pay your groceries. But hey. Also, sometimes she wouldn't be able to use her hands. OK, but she is getting a manual wheelchair. Power assisted wheels or no; she will need her hands. If she would have days where she wouldn't able to use her hands, she wouldn't be able to go out alone. Some quads will be able to push the handrims with the base of their hands and not have any dexterity in their fingers, but that's not her situation.

No. 383824

Getting tired of hearing about Jaquie tbh. Someone make her a thread cause she's all that's talked about now and she's disgusting lol.

Sage for boredom

No. 383825

>>383705

I've had a looksie, yes.

Colonoscopies without any medication are perfectly possible. There is absolutely no reason why an experienced endoscopist can't do a colonoscopy without pain and the rest (and an inexperienced one shouldn't be touching a scope). A c-scope is not pleasant, but there is no reason why I couldn't do it on a patient however special, toradolled up to the gills. In very rare cases, I have done lowers on people who for some reason needed to be sedated but couldn't. In that case, we tended to dissociate them - nitrous oxide and ketamine used to work just fine.

Bottom line, every problem can be surmounted. I have scoped a person whose intestines were literally falling apart from the inside (don't get Shiga toxin producing E.Coli, kids!) and she lived. Your POTS, EDS or other made up hard to verify illness doesn't even remotely rank as weird compared to what you see as an endoscopist.

No. 383826

>>383809

As someone that has severe arthritis in my hands dexterity is a real problem. There's an incredibly easy solution though, get a bigger wallet! I would never want a stranger going through my things! Especially when the solution is so simple.

No. 383827

>>383809

Absent some very well-known neurological disorders, such transient weaknesses don't really exist.

No. 383829

>>383819

There's no such thing as GP gaining. The closest I know to it are people with prediabetes or undiagnosed mild T2D who, of course, are at a higher risk as high blood sugars kill off nerve cells, including those responsible for GI movement. Of course these people will gain like hell.

No. 383831

>>383825
People in general don't realize that eds and pots are actually not that rare. The majority just aren't over the top, and prefer to be a fucking adult about the pain and deal with it. Also not showing off every little new medical toy and whining about everything

No. 383835

>>383831
If anything, I'd say with EDS you should avoid sedation if you can. Mizadolam relaxes the muscles, making already unstable joints more prone to dislocation.

Does Janice have EDS, though? I know she has POTS and Narcolepsy, but I've never heard her mention EDS. I don't regularly watch her vids though.

>>383825
Last sentence: yeah, that's what I thought. Thanks for confirming it though.

No. 383836

>>383781

Again limited experience in this, but the only time I've seen relatively fast gain from a tube was when we tubed relatively thin people with cancer while oncology gave them a shitload of prednisone. That made them balloon like heck.

In the normal underweight person, starting tube feeds are normally set to a gender and age appropriate daily calorific limit for a healthy person, the idea being that because they're smaller, they're gaining because their BMR is lower, but as they grow, their BMR consumes more and more of their daily calories and therefore gives them less energy to gain from. The result is that if someone sticks to tube feeds only, they will reach a healthy weight (if their dietitian is any good) and stop gaining, as at that point there is no surplus left to gain from.

No. 383839

>>383825
I've had several colonoscopies without sedation. It's not a big deal at all, it just feels like bad menstural cramps until it's over so you breathe through it and then you can get on with your day because no sedation.

No. 383842

>>383836
Well if the objective is gaining b/c you're very undernourished, it can go pretty fast. If you are able to eat but not much, or if your illness makes you consume more calories, you might get 100% of your daily caloric needs from tube feeds, AND be encouraged to eat what you can.

But no (sane) doc would give you a button that has to be sized for stoma length if that's the case.

No. 383851

>>383814
So she replied to this one and said that she is working up to Harlow giving just her debit card not her whole wallet but if her cataplexy is acting up she may need Harlow to give the whole wallet.
Not a medfag, but how does this chick have a license? If she can't hand her wallet over due to potential cataplexy how can she be counted on to react appropriately while driving?

No. 383852

>>383835

Mids is a bad, bad drug and I hate it. There is no good reason to keep it around, but that's a spergfest for a different time.

I don't normally sedate with mids unless there is a psychological reason for which it would be better if the patient would not remember stuff (you can guess what that would be), as midazolam is the most powerful amnesic I can give without going to jail (GHB). It is not a strong muscle relaxant for a benzo, and it has a half-life of 90-120 minutes (one of the reasons I hate mids is the inter-patient variability in terms of action, which to me makes it an unpredictable drug, no matter how much anaesthesiologists love it), so by the time we let you out of recovery, it should largely be out of your system and not prejudice your joints. I think. Probably. Maybe. Gosh, I don't know, it's what the manfuacturer's leaflet says.

.5mg xanax makes most people pleasantly detached from their predicament, a full mg tends to fuck you up real nice for us to be able to scope you. If you're nice about it, I am going to put your iPhone into the dock and we'll endure your shitty musical taste for half an hour. If you're not, you're gonna be listening to Wagner.

Also, I bet these Munchies are the people who ask for O2 for a scope as soon as they see we have a full nasal cannula kit prepped when they enter the endoscopy suite. Haha no. You get O2 if you otherwise come in on O2 (we don't always know in advance and since we do fit people with CF and other issues with tubes who might need continuous O2, it's best to be prepared).

No. 383859

>>383842

We being the poorhouse of Western health services, you get a button if you're a child or if you're at your goal weight. Enjoy your tube until then. Shit, the only reason I got a button during chemo was because I was, and now am again, a doctor at the hospital that treated me.

Button manufacturers have been trying the glorified bullshit called 'progressive sizing' (to wit, if you tell us your patient's CW, GW and current expected stoma tract length, we'll calculate their progression to GW and let you order all the tubes you'll need for them until they reach GW) on one of the other consultants here. She threw them out mid-sentence. I think she's right - unless tearing through the tube is a huge risk, or the patient feeds less than 18 hours, no point in a button until they're at GW, or even at all. If I recall correctly, Jacqui is a 24-hour feeder, so I have no idea why she's got a button right after her stoma establishing tube (that's official for 'the first tube inserted', which used to be important for historical reasons).

No. 383861

>>383831

Speaking in my 'I used to be a geneticist until I sold out because someone told me I'll have a BMW when I make consultant' voice, my pet theory of hEDS is that it governed by a number of genes, and you can have, of each, the full blown mutation, a heterozygous mutation or no mutation at all. Certain combinations of certain mutations yield misfolding errors. Or to put it in terms of Hamming distance: the closer you are to 'full blown mutant' genome, the more lax your connective tissue collagen will be. This explains why we have no single gene mutation identified for hEDS and why it's apparently such a spectrum of a disorder.

The alternative is that geneticists are lazy and it's actually got some simple, single gene Mendelian inheritance, but I doubt that somehow.

No. 383873

>>383861
that's why most of the hEDS munchies don't fit any criteria unless they force it and it's so mild no doctor worth their salt would dx it. unless you have an organ prolapse or in the case of marfan a dilated aortic root you need to go live your life and stop taking hospital selfies and calling yourself a warrior. saged for rant.

No. 383898

Jaquie probably does read here, she's just never said anything because she loves the attention. It doesn't matter if it's good or bad, at least people are paying attention to her.

No. 383909

File: 1504209164208.jpg (108.2 KB, 1388x428, hd6qg2r.jpg)

>>383851
Where I live, it's possible to have a licence with narcolepsy, is you meet certain criteria (one being a Maintenance of Wakefulness test with an interval of over eight minutes).

Cataplexy comes on with (extreme) emotion, so you can avoid it, especially when you are in a car by yourself. So yeah, narcoleptics can drive, provided they react well to treatment.

But Jaq has said before that she hasn't have a cataplexy attack in a years. Also, if you're having a cataplexy attack, you can't tell your dog to hand your wallet to the cashier. You just have to wait until it passes. And if you're having a cataplexy attack in the supermarket because the cashier makes you laugh (??), no-one will think less of you if it takes a few more minutes before you can pay.

Also, she says that even though she will hardly use it, it's good for Harlow to be able to do the task. But it's not. One of the reasons people would choose to train their own service dog, is the fact that 'pre-trained' dogs from an organization may have learned tasks that you do not need, so there is less 'headspace' to learn the specific tasks that you want them to. You just don't spend time training your service dog on tasks he/she will never need.

>>383873
Does rectal with vaginal prolapse count (nullipara)? If so, can I still go live my life, of do I need my own warrior-account now? Where do I sign up? Kek.
Also, that theory: that has always been my theory as well, though IANAD. Think they would've identified the gene by now if it's not something like that. OR it would be because it has become impossible to actually research it, because of the overdiagnosis of EDS for perfectly normal hypermobility.

No. 383917

>>383909
Jaquie lies though and that's part of the reason people find this thread. She claimed she needed a wheelchair when Judd came home from the military because cataplexy and there's also a video of her sitting down in a store because thunder was giving her cataplexy. Never really know what to believe with her.

No. 383924

OK, someone said they were getting tired of Jaquie, and I do agree she earned her own thread.

So new material. Has anyone seen this video? It's a long video, but the woman in this vid lies down in a store on the floor with her service dog on top of her because she feels she is going to faint, and then complains of how people react to her and her dog.

Also, is it even possible to faint if you are already lying down? I'm really not sure at this point.

No. 383927

>>383917
I'm sure I remember she said somewhere that she hasn't had cataplexy in years, and also that she only used to have it when laughing and not with other emotions. Don't know in which video that was though. Will post if I can find it.

No. 383928

>>383924
I saw this. I thought it was a parody at first and that Jimmy Kimmell was going to jump out half-way through. Holy hell.

At the end of the video she claims she didn't know the camera was on. Her husband (?) keeps eating his fruit like been there/done that. Can't really help you anyway.

No. 383938

>>383909
Well, yes, you need a warrior account. Just copy illness letters from other people's accounts. And wow, that prolapse sounds painful, but I bet no one can see it when you go to the mall. You need something that people can see. Perhaps just tape a port tube to your bra strap and dangle it out your shirt?

https://youtu.be/jL7uxN2GvP4
In this video, "All About My Autism," Jaquie claims she has trouble navigating supermarkets because of her SPD. Does this mean a custom wheelchair took care of those issues since she's clearly planning to use that chair to shop when she "has her independence."

After you set up your warrior account, teach your service dog to type because what if, and I'm just putting this out there, one day you wake up and can't type snarky things on the Internet? You would need your dog to do that. I mean, right now, you can type, but what if…? You know? Let's be prepared here, folks.

Sage for being a jerky snark on the Internet.

No. 383960

>>383782

Right, I'm dumbfounded that Jacquie didn't realize at all that she was going to puff up with her eating plus more tube calories. Even she should have been able to predict that. (and wtf how are we supposed to believe she's losing weight?)

No. 383969

I guess she doesn't understand basic calorie math. Although a lot of people don't, and then again most people who are sick enough to truly need a tube don't have the opportunity to worry about oral calorie math since they generally cant eat significant amounts of calorie dense food.

No. 383980

>>383924

I saw that last week and considered posting about her. Apparently she has been fainting for years but only recently heard about POTS. Now she is saving $ to visit the POTS Treatment Center in Texas.

No. 383982

File: 1504216731345.png (393.46 KB, 673x1168, Screenshot_2017-08-31-14-53-33…)


No. 383983

File: 1504216839362.png (417.21 KB, 675x1121, Screenshot_2017-08-31-14-53-57…)


No. 383986

>>383982

This girl has a yt channel that is 99% her filming "fake service dogs" or being rude to people. I can't stand her.

No. 384000

>>383980

I found this vlog really funny which I know wasn't her aim but it's all so fake.

No. 384014

>>383982

Oh ffs. Virtually any young woman who's dehydrated is going to exhibit symptoms of POTS, unless you're an athlete with an amazing cardiovascular system.

Before I got slugged with prednisone for my hypercalcemia which was causing me to be dehydrated, the med techs in the cardiology clinic were leaning toward POTS. Thankfully the doctors I saw were more like, "Yah plz drink more, we'll follow up with you in a few months to see if you've corrected with the most benign treatment possible."

But considering this bitch is seeking a specialty clinic for POTS, something that would be easily handled by a cardiology clinic, it sounds like they're rolling in the opportunity to bilk as much money out of hysterical hypochondriacs as possible. AKA a bunch of money hungry doctors being irresponsible, like we see with countless doctors enabling the munchies in this thread.

No. 384053

>>383983
Hahaha she did her own testing at home. Here's pots treatment in a nutshell: more water, more salt, more exercise. If that alone isn't enough, medication. You don't need to crowdfund a trip to anywhere special.

No. 384123

File: 1504993236648.png (1.66 MB, 2048x1536, IMG_3149.PNG)

Jaquie "trying" to eat mac and cheese, totally awesome food for gastroparesis….not!

No. 384130

We need a Jaquie thread now that we're back.

No. 384134

>>384123
I'm sure she ate all of it as soon as the camera was turned off

No. 384138

>>384130
I am in complete agreement

No. 384143

File: 1504995683169.jpg (600.95 KB, 1318x623, munchiehell.jpg)

Because she's tired of people saying "I thought you only have the rheumatism thing".
No one ever diagnosed her with EDS3! Her rheumatologist only said, that she might have hypermobility syndrom because of her wrist.
She thinks her RA is attacking her joints and her organs(mainly her heart), even though her GP says that her heart is fine and that she doesn't need to see a cardiologist.
She tagged CRPS even though she only has chronic pain syndrom(CPS). Guess she's also hunting for CRPS diagnosis now?

Her instagram is still private so either she found lowcow or someone won't stop questioning her :)
While Nervenschmerzen was taking a break she suddenly needed a break, too. And she was back once Nervenschmerzen was back.

Not that interesting, but I guess once she sees her doctors in october it will get really interesting regarding the Lupus question -> she thinks her doctors misdiagnosed her RA nearly 10 years ago and that she has Lupus instead

No. 384154

>>384138
Make one then

No. 384163

>>384154
I don't know how ;D but if someone else can I'd love that… thanks

No. 384165

Can we all please talk about the fact that a month ago we see jaquie in janice's blog (the home infusion one) walking around unaided and now she can't even walk from the couch to the fridge without her rollator
jesus fucking christ

No. 384171

>>384165

Not to mention just a few days ago she was wandering around taking photos, getting up and down from the ground on uneven surfaces on the beach.

Also if her joints were really that bad, wouldn't she have trouble getting up and down from the floor? When she's getting her walker over that railing she sits down (on her legs with her knees bent under her) to fucking pull the thing up and over one side at a time. Just fucking lift it. Brace yourself on the wall if you have to. If you can hold a camera above your head for 5 minutes at a time, several times a day, you can do that.

No. 384172

>>384171
The fact that she ranted about how she couldn't make it 3 meters to the beach because it was not "safe" made me angry.
Safe?? Like wtf what could happen?

Sure she might have EDS but she have not even talked about having dislocations in forever, and also those doesn't kill you

No. 384175

>>384171
Jaquie is a lying sack of shit who can't keep her story straight. I'd be surprised if she any actual illnesses other than anxiety and maybe a few allergies. She's nothing like the brave, determined spoonie she pretends to be. She's a spoiled, entitled brat that found a way to get attention and be as lazy as possible.

No. 384179

>>384172
And even people with real EDS that very rarely get full dislocations tend to sublex joints painfully on a nearly daily basis (which is not always present with hms). (Even though it's usually a temporary pain). It's just that most people don't talk about it. You know that if jaquie was having that happen she'd be crying all over YouTube and instagram. And sitting/crouching to standing is often rough even with controlled pots, which she claims hers is not.

No. 384181

>>384171
Those things are all difficult with EDS, even for someone in pretty decent physical shape. Uneven surfaces as well. But walking less than a hundred feet on flat ground she suddenly can't do? She doesn't even know how to lie convincingly.

No. 384188

>>384181
uneven ground can be a challenge, but this wasn't even that uneven. Put on some ankle braces and you'll be fine.
Also if she's soon hypermobile and fragile, how come she doesn't need braces or PT?
Her lies doesn't even make sense

No. 384193

>>384171
It takes so much self-restraint to stop myself from posting some of these obvious observations on Jaquie's videos. jfc

No. 384197

>>384193
please do not hold yourself back!

No. 384199

>>384193

Ugh I know. But at least there's a few people on YouTube who are starting to realize she's not making sense. Of course then jaquies minions jump in and wk her

No. 384200

>>384193

Make a fake gmail. No one will know it's you

No. 384214

Are we off the temp site and back here now?

No. 384227


No. 384235

>>384227

Cheers.

No. 384240

File: 1505007288940.jpg (283.09 KB, 1079x1458, Screenshot_20170910-023043.jpg)

Living legend?!

No. 384247

While they were prepping, Jaquie and Judd put most of their stuff in their bedroom upstairs. She said they weren't allowed to board up their windows but she hoped their curtains would protect their stuff if the windows blew out. LOL good fucking luck. Her lack of intelligence seriously blows my mind.

No. 384248

>>384247
She's the dumbest bitch out there seriously. Lol. I think that should show everyone just how bad it is. And how inconsistent all of her medical bullshit is. Like she's not even smart enough to lie about anything consistently.

No. 384254

>>384240
I'm pretty sure she wasn't the first to say those things. Also, it's pretty sad she downloaded an app just to beg for compliments.

No. 384256

>>384254

Oh, she's totally done it just to get people to tell her how special and how much of a warrior she is.

No. 384257

Has anyone heard of Natasha Coates? She seams a bit of a munchie to me.

No. 384258

>>384248
Exactly. She could possibly fake all of those diseases if she was consistent. But she contradicts herself too much. "I can't eat anything and can't tolerate my tube feeds" yet FILMS herself eating junk and is visibly gaining weight. "I can't lift my walker or bend down" but can walk and kneel all over the beach and regularly squats down. "I'm allergic to everything and can't deal with noise" but frequently goes to Costco, the US's equivalent of a giant petri dish combined with hell. If she never ate, never walked, and never left her house, she'd be slightly more convincing. But she's too much of a moron to pull it off.

No. 384266

>>384257
She's been discussed on these boards before. Deemed munchie and moved on.

No. 384278

Jaquie keepd talking about how exhausted she is from the hurricane prep. Except she didn't do anything. Judd moved everything upstairs, bought the supplies, drove her ass to Orlando. All she did was ride and get to Orlando and immediately start bitching. Even Janiece mentioned how much Jaquie complains about everything.

No. 384282

>>384278
Yeah I thought that was so rude. Your friends are nice enough to put your ass up for the week and the first thing you do when you get there is criticise everything they do.

No. 384289

>>384278
She pretends to be sick so she has an excuse to be lazy and to not be accountable for herself and her actions. She's stuck in the mindset of a whiny teenager who's used to having everything handed to her. None of the illnesses she claims prevent her from helping out at least a little, or gives her a good reason to complain s much. She's way, way more lucky than lots of people. She's not really sick, and is able to escape the hurricane. She's incredibly selfish.

No. 384290

>>384282

She's one of those munchies that seems to think she's the only person in the world who's sick, and therefore she's entitled to have the world revolve around her. Aka, the absolute worst kind of munchie.

No. 384383

File: 1505043170841.jpg (342.01 KB, 724x527, angioedema.jpg)

Cow that has a port for magnesium infusions.
Suddenly she's so healthy, but because she's such a special snowflake she can't go to work. How is this possible? Did the car accident cure her Osteoathritis, TMJ, TN and RA? Or did the lack of attention cure the munchausen?
Any information on how much medicine she takes? She seems to have a lot engery for someone who takes neurotin and lyrica.

No. 384401

>>384383

Jfc her insta is a manipulative trainwreck. I had been checking her page every once in a while, privately kind of frightened that treatments for autoimmune conditions could indeed cause this kind of drastic weight gain. I mean, looking at her "pre-RA" and "post- RA" pics, that's probably at least 75-100 lbs she gained.

Now her recent posts, in conjunction with a more jebus lubbs me kind of thread, she's starting to admit more stuff. Depression. Bipolar. Suicide attempt. I'm guessing she is a huge emotional eater.

Not knowing any one irl who has undergone other autoimmune treatments, but also the doc said a few NSAIDs she'd prescribed me may cause a little weight gain. So I stopped taking them, rather dealing with the pain that the nearly disabling weight gain that would be caused by that kind of dramatic blimping up.

So yeah, I'm fucking suggestible and ignorant, but TL;DR, this cow was part of the reason I stopped getting treatment for my autoimmune condition.

No. 384408

Jaquie goes shopping at costco for "hurricane supplies" and I see her buying a giant pile of rice krispie treats. She's too stupid to realize the shit she puts in her cart is visible to the camera on a LOT of her grocery trips.

"Cucumbers are safe food!! I can't eat anything!" Good luck with those Oreos then, I guess. kek

No. 384420

>>384401
Thought that she's borderline instead of bipolar?

Mix prednisone/cortisone, narcotics and high doses of lyrica and you gain endless of pounds. And she seems to be really lazy, so it's no suprise! In earlier posts she admited that she has to use the motorized carts(?) in grocery stores.

Why is she allowed to drive? I always thought that they're really strict, especially when you're taking so many narcotics.

No. 384437

>>384408
Um, sure jaquie, you totally need a feeding tube that bypasses your stomach. Some real serious "gastroparesis" there. It's like she's daring someone to call her out, but is too dumb for that.

No. 384530

>>384401

Maybe she just ate a lot?

No. 384567

>>384420
I haven't been able to find any sort of pictures of her before the weight gain, are they on her IG or elsewhere? But yeah, I totally believe it. As shallow as it sounds, I'm very hesitant to use meds that are notorious for weight gain (especially if there's another option readily available).

No. 384607

>>384567

Some people do have to use meds that cause weight gain though, because they have no choice. If you're really desperate, you take them.

No. 384610

>>384607
Not everyone gains lots and lots of weight from those meds, though. It's possible to be on meds that cause weight gain and not gain weight, it depends on the person and also if they're eating the amount of calories required for them to gain weigh

No. 384638

File: 1505077682134.jpg (763.57 KB, 1031x1683, Screenshot_20170910-160641.jpg)

Pretty sure this bitch just wants to be Jaquie.

No. 384656

It's a circle - Chronically.ams wants to be Jaquie and Jaquie wants to be Mary Frey. Why don't they all just be themselves?

No. 384658

File: 1505079441531.png (956.73 KB, 1080x1701, Screenshot_20170910-223439_01.…)

Guess who is in hospital again…

No. 384659

>>384638
Of course she'd use a wheelchair all the time if she had one. Why does everyone with pots demand a wheelchair when walking is literally the best thing they could do?

No. 384662

>>384658

Her vomiting is somatic but physiological medication helps, what?!

No. 384666

>>384658
I don't understand what I'm looking at here. Is that a leg or a really meaty arm?

No. 384669

>>384666
Arm - you can see her head at the top right of the image.

No. 384689

>>384658
>>384662


I don't understand that either. Plus. Why does she need to be in hospital? What does she really desperately need that much that she needs to be in hospital for. Shove some anti emetics and pain killers down that lovely tube you model so frequently and move on.

No. 384697

Can Chronically Jaquie get her own thread?

No. 384704

>>384689
She would never be hospitalized here. Why don't they treat her outpatient? And that's a heck of an arm for someone who was starving to death

No. 384710

>>384704
I don't understand why they are not looking at her history and trying to figure out why she has been admitted so many times. Surely they can see that she's been in so many times for such questionable things.

No. 384719

New munchie for ya'll.

Check out life, lungs and laughter. She's got the oxygen tubes up her nose like some sort of bad 'The fault in our stars' wanna be.

Shes got a wheelchair, port and what looks like a niv/cpap/bipap to play with. Obviously there's loads of photographs of herself sporting her medical toys.

Looks like she persuades em to give her home Iv antibiotics too.

What do you think?

No. 384721

>>384697
Make one.

No. 384723

>>384656
Honestly I can't stand Frey Life, they alternate between snoozefest and OTT.

No. 384729

>>384719
I just checked her out and noticed a few things that are odd. First thing is that she never specifies what lung disease she has. I mean, it's obviously not CF because that often causes other issues she doesn't have but what is it? That kinda suspicious to me but I don't know. She also says she a type one diabetic but, um, it doesn't really look like she is if you know what I mean. Some people with type 2 are embarrassed to have it because they know it means they were leading a really unhealthy lifestyle so it's somewhat possible, I guess, that she could be claiming type one. The last thing that seemed a bit off to me is the fact that she went home with a PICC for antibiotics. Maybe it's just her hospital/her country/whatever but why not have her do injections instead? Most IV antibiotics can be done IM. I personally prefer it that way because it's so much easier and I don't have to keep an IV in/get a PICC but I guess I lose all the sooper speshul spoonie points for that kek

No. 384732

>>384719
>>384729
tbh there are a few things that let me believe she is not a munchie but actually sick.
first of, have you noticed how often she posts on her IG? like once or twice a month. that seems to be really few postings for an attention seeking munchie.
next thing she claims her illness on her blog, if you follow the link in her IG's bio. she claims brittle asthma and that the high dosage of steroids she's taken caused a lot of following diseases including diabetes. where does she states she has type I?
third thing is her looks that got progressively worse over the years. on her blog she has that journay sub page where you can see that. she actually looks sick at this point something that differentiates her from those other munchies, who look like the living life and start to gag a little for their IG story/videos.

No. 384748

>>384732
I agree. She gets very few comments and some seem to be spam. She posted a pic on Insta of "Days living with T1D," so I assume that means type 1 diabetes? She seems lonely and like she's trying (except for all the foods that seem non-diabetic friendly, but tbh, I don't know enough about diabetic eating to comment on that). Also, not enough emojis in her posts ;) and she doesn't use hashtags in the way that gets attention from the munchies.

No. 384760

Holy shit, was anyone else ticked off in Janiece's new vlog when she was screaming about the frog? It was borderline psychotic.

No. 384763

>>384638
A custom wheelchair for knee surgery? She must not understand the health system at all…. in the time it takes to build a custom wheelchair she'd have recovered and would be weight bearing again.

No. 384773

>>384760
Just watched that. She's fucking crazy. Did she really have to pour bleach on the poor thing? God.

Also she keeps talking about sacrificing Jaquie by throwing her out into the storm without her walker. And Paul said "Dear Irma, please, we give you this young girl, who has no life to live." Oh my fucking god I love Paul.

He's decking out his roof rack with flood lights and has to use the dining table (which pisses Janice off even though Paul has put a tarp down and the table's made from glass, not wood) because he doesn't have a work bench, and Jaq picked up that he was giving a hint. Janice turns around and is like "DON'T get in the middle of husband and wife squabbles". Jaq looks confused. Paul says "I don't wanna buy one, I just wanna build one." jaq says "let him build one." And Janice is so mad. Why is she mad? Your husband is working hard to make sure you guys are safe, he obviously enjoys doing the kind of work he's doing on your ugly table, let the poor guy build himself a bench and have a hobby that's not vlogging and complaining and yelling about fucking frogs.

No. 384778

>>384732
Agreed. At worst, she's a bit OTT but not a munchie.

No. 384784

>>384658

Nnnnnnope. Nobody in need of hydration badly enough to be shunted to A&E would get a subq. They'd just get plain fucking cannulae and a bag of fluids. Subq hydration is a palliative care practice for people who are too frail to get a bag of fluids the usual route.

In all likelihood, she has been whining to get some subq zofran. If you are known to a gastroenterologist, and your gastroenterologist is a gullible fuck, you might have instructions left at A&E to give you subq zofran, which dissolves slower than the relatively fast acting but quickly eliminated IV version. Typically, subq medication plans (with the exception of subq bricanyl for asthmatics and subq immunoglobulins like HyQvia) mean you're basically 'being managed'.

No. 384789

File: 1505102001649.png (238.81 KB, 750x1334, IMG_2264.PNG)

Guess the condition!

No. 384792

File: 1505102219730.png (205.71 KB, 749x1286, IMG_2396.PNG)

Sooo… @chronically_p. Claims to have MS and NMO (nnnnope!). Claimed NMO kills a relatively large proportion of patients within three years. Claims to have NMO without any signs of either optic neuritis OR transverse myelitis. And of course she's in a hot tub… which is a big no-no for anyone with a demyelinating disease. Bonus Munchie bullshit? 'Leaky gut'. Yes, really.

No. 384794

File: 1505102271459.png (188.25 KB, 743x1193, IMG_2393.PNG)

Things you do when you have MS and a gastric bleed: sip champagne while in a hot tub.

Sure, Jan.

No. 384795

File: 1505102923624.png (263.35 KB, 750x1281, IMG_2397.PNG)

Today in shit that doesn't happen unless you're a spoonie: "I had lots of seizures yesterday, spent more time out than awake, lol look at me ice skating".

Err no. That would be… not the case.

No. 384796

>>384792
Genuinely curious as I know someone with leaky gut. Why is it munchie bullshit?

No. 384798

>>384796
It's not a real thing. It's almost exclusively diagnosed by naturopaths and is claimed by people who can't eat gluten but don't have celiac or a legit wheat allergy. It's a supposed cause of autoimmune disorders. But while there have been studies that show increased intestinal permeability in people with Crohn's, there is little evidence to show that it is real.

https://www.badgut.org/information-centre/a-z-digestive-topics/leaky-gut-syndrome/

No. 384799

>>384697
>>384130
This please. She's really one of the only munchies I follow so it'd be a lot easier to have her get her own thread.

No. 384807

>>384658
Her recurrent use of UK healthcare resources is appalling.

She has a somatic (psychological) problem which she has apparently 'accepted' and thinks it is related to previous trauma 'she alludes to this in her posts)

I'm not sure she has 'accepted' the diagnosis at all. Surely, if she had she would realise the NG feeds and recurrent ED attendances are perpetuating the somatic disorder and what she really needs is therapy. Lots of therapy.

No. 384887

>>384729

IM antibiotics are rarely used in the UK, because they are just plain cruel. They are really painful and not always as effective as IV abx. That's why people have ports etc alot of the time, to enable them to complete courses of IVs without having to stay in hospital.

No. 384890

File: 1505128409865.png (831.47 KB, 1536x2048, IMG_3156.PNG)

People told her it's high and maybe her weight is contributing. Top kek.. She claims it's due to a "flare" of pain.

No. 384927

>>384789
I hoped she had posted about it but no.. Damn

No. 384935

>>384890
I don't think pain alone can increase blood pressure. But I could be wrong. If it could, I doubt one's first thought would be to take and post a picture

No. 384937

>>384887
Plus, PiCC lines aren't very hard to put in, it can be done in a doctor's office or even bedside, unlike other central lines. They even put them in children who need to go home on iv antibiotics. However, they seem to be another point of pride for munchies.

No. 384938

>>384807
She hasn't accepted it at all. She's put zero effort into therapy, and whined her way into a tube again, even though she was told she didn't need it. And now she's back mooching off the hospital.

No. 384941

>>384795
She's very healthy for being such a sick person kek. It's interesting how munchies don't have the energy to work or go to school or take care of themselves, but are perfectly capable of ice skating, going to parties, and running thriving IG accounts.

No. 384959

>>384795
who goes ice skating after having "lots of seizures" the previous day? like of all fucking things, ice skating. when i see munchies posts things that are this retarded (including their ridiculous meals) i wonder if they think it's going to be received as brave, with the expectation of asspats for ~just trying to live a normal life despite having 37 diagnoses~.

part of their whole thing is being both a hero and a victim so i guess it makes sense. or they're just fucking stupid and suck at their craft.

No. 384964

>>384959
It drives me absolutely crazy, especially since there's plenty of actually sick people who use the energy they do have to work, instead of mooching off of others, and if they miss work, it's because they physically can't go that day. Yet here she is ice skating after seizures. It's like jaquie, if you're going to lie about being sick, at least be consistent

No. 384972

>>384959
Yep, that's it. The victim/hero thing. So strange. Basically they whine about being so very sick, while at the same time wanting to show the whole world how "brave" they are.

I've always hated this "hero" thing for people with disabilities and chronic illness in general. Like, in movies and the media when people w/ a disability are being portrayed it's often showing them in a kind of hero role. Double leg amputees climbing mount Everest, that kind of shit. They are "overcoming" their disability. Same with "fighting" cancer. Just living a normal life and doing what you can do isn't enough, you have to 'overcome it', or 'fight it', be a hero. And recently, a 'warrior'.

With that attitude towards disability and illness being so pervasive, it stands to reason that munchies adopt it. Leading to all kind of weird crap, trying to proof how sick they are and at the same time how 'normal' they are in spite of everything, and how brave they are to endure it. Come in pill porn, summing up every single day spent in a hospital, every blood draw or every single pill they swallow (who even counts things like that??). And of course, hospital selfies with people hooked up to every medical device known on earth while showing either la belle indifference or - even worse - thumbs up and creepy smiles and "but it's OK" and "I'm so thankful to be able to have this meds". Urgh.

Saged for ranting.

No. 384975

When is someone going to admit Nicole to an inpatient eating disorders unit? She has put zero effort into therapy, she has an atypical eating disorder! Bulemics after awhile can vomit without forcing themselves just by the feeling of fullness, and Nicole used to be incredibly overweight and most likely began getting lots of compliments as she lost weight and is afraid of gaining(she even mentioned it in a post in her IG which I believe she erased later) that's her only past trauma that would bring on so called 'somatic vomiting' top kek seriously she's in uni for health sciences as well and has studied psychology and can't recognize this? Also, she's involved in the pageants and no one has told her to stand up straight? She's always hunched over with her shoulders forward like Quasimodo. . .

No. 384995

File: 1505147764500.png (455.96 KB, 679x1030, Screenshot_2017-09-11-09-32-40…)


No. 385002

>>384995
I can honestly say the last thing I feel like doing after a seizure is filming myself talking for my Ig account.

No. 385007


No. 385016

>>384927
Pain can very much increase bp. It's one of the ways to tell if someone is in pain.

No. 385029

>>384972
ugh I cannot stand Jaquies weird double thumbs up she does in her intro video. it annoys the hell out of me. She just does that thumbs up excessively in general and it makes me want to tie her thumbs down

No. 385035

>>385029
There are times when I think that literally no words can come out of her mouth without being accompanied by a hand gesture of some sort. I realize that some ppl talk with their hands but for someone who is supposedly so weak and in so much pain all the time it seems like a lot of unnecessary flailing.

No. 385046

>>384995

Fkn kek, for someone who experiences seizures, why the hell does she have the flashing color changing light next to her bed?!

No. 385070

>>385046
Because she's not photosensitive? Not all seizure sufferers have their seizures triggered by flashing lights. It's actually quite rare. But I agree that something like that would probably make me feel super nauseous and or dizzy when post ictal.

No. 385073

>>385007
Ew. There plenty of people with GP, even some on TPN, who live fairly normal lives. Being tube fed requires doing things differently for sure, and some things take longer, but then there's no grocery shopping or cooking or doing dishes. There's the risk of infection, especially with a central line, but there's also a risk of getting in a car accident every time you drive. But the GP spoonies expect a fucking medal for every little thing.

No. 385074

>>385035
When she does it, her thumbs don't move like she has eds

No. 385093

>>385035

I totally agree. Why does she need to wave her oh so weak and feeble arms around all the time?!

No. 385096

>>385070

My favourite? Spoonies living alone complaining about absence seizures. Pray tell, how do you know you had one? :)

No. 385101

>>385096
This.
I feel like an idiot because for a while I was taken in by this girl. Seeing her posted here opened my eyes to her behaviour. Now it's glaringly obvious she's a munchie.

No. 385104

>>385103
wondering if she had any munchie traits before meeting jaquie (and paul)? Might have seen how their illness got them some sooper speciul attention

No. 385107

I got used to the temp board and now I'm fucking up saging posts, damn it.

Something, something, kek that Jaq picked up on Janice constantly eating in her vlogs, something something.

No. 385111

>>385101

Don't worry. So was I! I was even one of her Patrions…

No. 385113

>>385103
I find it interesting that both Jaquie and Janiece seemed to forget all about their munchie drama during the hurricane. I mean I understand it was a big deal and definitely a major concern but one would think if they were really THAT sick that the illnesses would still be apparent to the viewer. I mean really, Paul had everything completely under control when it came to hurricane prep, he did a great job. And Jaquie and Janiece were basically just having a sleep over and seemed to forget about their grave illnesses.

No. 385114

>>385104
Apparently they met in high school, when Jaquie already had her narcolepsy/epilepsy diagnoses (I think), so maybe it just rubbed off on Janiece? Too bad. I want to blame it on teenagers, but now they're adults and not acting much differently.

No. 385115

>>385114
I know 13 year olds which are more well behaved that janice will ever be, she has the most childish, nasty attitude i have ever seen

No. 385116

>>385113
I noticed that too. The absence of munching is so apparent and a stark contrast to every other vlog. It's not even like their medical issues are apparent but they're not talking about them - the issues are just straight up gone.

No. 385119

>>385114
I think both Judd and Paul have enabled the girls' dependence and immaturity to some degree. Paul seems to be less of an enabler than Judd but it's just too weird that Paul and Judd are best friends and both have munchie wives.

No. 385125

>>385116
Not one mention of Janiece's gastro-itis since the hurricane started.

Jaquie talks about the hurricane like she does her illnesses. "The hurricane has been downgraded to a…but that does not mean we can stop preparing because it could go right back to a…" (says it almost with a hopeful tone).

In Janiece's vid yesterday, I think, she explains calmly how Jaquie will do her breathing treatments if the electricity goes out and seems a little surprised at how needy Jaquie has become.

Someone on this board mentioned that Jaquie wasn't using a walker the last time she was at Janiece's house, so maybe Janiece is seeing things with fresh eyes?

No. 385126

>>385119
Janiece says her mom eats dinner alone upstairs and Paul eats in the living room. I think it's going to be a close race between Paul and Janiece's mom if anyone needs an Epi-pen. They may come to blows over who gets to do the "stabbing" should anyone need it. These girls are a hand full!

No. 385127

>>385125
I noticed that Jaquie talks about the hurricane like she does her illnesses too. I think she needs something dramatic to obsess over. If there is no real drama she creates it ("illnesses") and if there is real drama well… bonus.

No. 385130

>>385127

It's like they are trading one drama off for another. When the hurricane is over and there is no longer the potential of them actually getting hurt, they will go back to being munchies.

No. 385131

>>384975
You are so right! If you look at JBN's posts before the somatic vomiting she had started to get into 'healthy eating'
My guess is that as she started to lose weight she quite enjoyed it's benefits in terms of appearance and now it has gone too far. There is no physiological reason she cannot tolerate food/fluids orally…they end up in the same place as her NG feed (her stomach)

However, by vomitting the things she's taking orally she knows her precise calorie intake from feed and knows this as an effective but extreme method of controlling her weight.

When the tube was removed she had lots of 'flares' of a completely psychological condition; I wonder if this was distress at not having the tube and thus losing control of her calorie intake?

No. 385132

File: 1505168514230.png (134.23 KB, 640x878, IMG_2781.PNG)

That's quite a lot of adaptions for someone with a functional (not structural) neurological disorder!
Who agrees to all this stuff? Don't they get a medical opinion regarding its necessity?

No. 385137

>>385132
Of course he didn't get medical opinions, that's not the munchie way. If her or jaquie or nicole waited for a doctor to tell them they needed something, they wouldn't have any of it. None of the tubes or the wheelchairs or the walkers or any of it. Because other than being attention whores, there is nothing wrong with them.

No. 385155

>>385132

Ugh. This makes me so angry. In my area, it'll take my elderly grandparents six months wait just to get assessed by an OT let alone get the equipment they rightfully deserve to be delivered. These fucking munchies get it handed to them on a plate, suddenly have the money to fund it themselves or start a pathetic gofuckme for their precious munchie accessorising they don't need nor deserve.

Sage for rageblog.

No. 385159

>>385132

No medical opinion needed in UK, it's based on what the person can do in terms of function (getting on/off toilet, using shower or walking etc) regardless of cause. Social care is assessed on needs, be they caused by physical or somatic illnesses.

No. 385162

>>385155
>>385132
Is that a shower room? I don't know any program in the US that would pay for that.

Where I live, local thrift stores sell enough durable medical equipment that a person could look quite munchie-munch for less than twenty bucks.

But, WOW, he must have some super power to need all that and be able to get the floor that clean.

And, is he 12? Just saw his bedding over on Insta. Sorry I can't post a pic right now. Good grief.

Sage for responding to the rageblogging.

No. 385166

>>385162
I believe he is in the UK.
And yes you can find a lot of adaptive toileting equipment in thrift stores in the US (which is good because the majority of my post-stroke clients had to pay for the things they needed out of pocket)
I have been wondering about the cleaning - he has stated in multiple post recently that he spent time cleaning his room or bathroom - but he has also claimed he was so weak he couldn't even use a transfer board to get out of bed - so when he says he spends time cleaning - is he the one who is cleaning or is he just directing someone to do his work
- It has always annoyed me that he complains about medical professionals who want to deny him equipment because it will make him less independent but then gets mad when those professional won't help him be independent in the ways he wants to be (for specific social outings)
- He is an adult but his decor screams 12 year old
- And question because I have no idea - why does one need leg braces in a power chair if they are supposedly so incapacitated that they can't move their legs

No. 385171

>>385166
To answer your last question, they don't typically. Leg braces, especially AFOs, tend to be for those who want to walk and are able to, but would like to be better able to (ex. someone with ceberal palsy trying to gain more strength by walking but still needing the support; someone who chronically rolls their ankles and it can't be fixed without standard braces due to fitting, level of instability, etc; and so on)

No. 385172

>>385170

Thats what I thought. I have had clients with braces to provide extra support to allow them to do thinks like walk or in some cases to try to prevent/decrease contractures but never just random braces for someone who is neither trying to walk nor seems at risk for contractures

No. 385225

>>385172
Also, why would someone with a functional disorder and no physical problem need something as restraining as AFOs? Those aren't widely prescribed, only for people who really need them.

No. 385226

>>385131
She still is heavy for someone controlling their weight. Not to fat shame, but also if you're trying to lose weight maybe don't beg for a tube that pumps calories into your stomach (although I have seen that before in eating disorder patients, they were overweight but refused to eat just to get a feeding tube)

No. 385256

Just watched Jaquie's last vlog after reading some of the comments here. She literally didn't mention her illness(es) once, besides doing her daily breathing treatments. Despite happily walking around outside for a while yesterday, she seemed ok today. Happy and bright eyed. She was screaming and laughing while playing a board game with everyone, and she beat Janice which Janice was obviously so pissed about. Jacquie yelled "yess!! I won!!" And threw her arms up. "She's the competitive one!" (Pointing at Janice) "but I won which I'm really surprised about!!" Janice could barely look at her lol.

Watching these two stuck in a house together during a hurricane is actually kind of interesting. It's like a bad, double vlogging reality tv show.

Also, Jacquie is obviously trying to keep it under control but I think she's seriously stressed out about the weather. She's trying to seem normal but you can tell she's really out of her depth. Which is understandable I guess, being away from home and away from Judd while it's all happening. But she's OBSESSED with talking about the hurricane. She's acting like a damn weather girl, repeating the same information every 5 minutes all fucking day. Like, if we wanted information on the weather we'd turn on the news for live updates by professionals. Not wait for her vlog to come out so we can get Jaq-news a day after it's already happened.

No. 385344

So endlessvoices is up to something again..
Her current story video is just SO ridiculous..kind of insulting.
"I am Fat fat fat fat cant stand myself" etc
Then talks about her mainly liquid diet (she still hasn't started the liquid diet and already not following it-liquid diet to mainly liquid-

Then she talks about the groceries..ensure boost pudding juices broth soups rice (she fucking emailed her dr to ask if it's ok to do a mostly liquid diet and then said she's going to try it anyway) since she's having a hard time keeping solids down (guess she's in another "flare?") Next it will be I can't eat so I have to have liquids (maybe purees and soft foods)but I can't drink enough to maintain my weight. Give me my precious tube now.
(There is no reason she can't drink enough to maintain. It's super easy to do. And she has no medical reason to not be able to) there are a bunch of ways to live on a liquid and puree diet which can take a while to figure everything out but she's in for it if she thinks a motility specialist would consider giving her her precious tube..
Then she starts talking about how fat she is again and how strong her anorexia thoughts are and wanting to exercise and not eat and just how hard it is.
The last one is her wanting to exercise but she goes on to say she's still on exercise restriction even though she's been in recovery for 2 years and on restriction for 5 or 6 years. "So I just don't know what to do anymore."

Does she not see she's pulling her own tail with all this anorexia stuff? She talks about it as if she is really struggling currently active with anorexia. [I have no doubts she has been restricting/binging/purging the 2 years but she has constantly said she's in recovery and while having the thoughts she's otherwise been recovered]
Now she's back to plastering her face and most special anorexia in the state everywhere.
She's going to make getting any treatment for GI extremely hard on herself..specially her special GP treatment(s)

It feels like she isn't getting the results and attention she wanted (like praying they would admit her when she met the temple Dr for the very first time because she's just that sick and special)
So she is falling back to anorexia stuff to get more attention, to need more medical and mental intervention/treatment, to distract people from her mild GI problems she has been so dramatic about, things not going like she wanted.

I'm thrilled they are doing the smart pill on her!

A link to her newest vlog..its a mini dairy farm!

Sage for long rant

No. 385355

>>385344
She seems to like when people call her out on her BS - its like any attention is good attention to her. When her IG starts to go quiet she always seems to bring up something else that seems ridiculous to try to bait people into responding. She got a lot of responses when she posted that she had checked her test results online but since meeting with the doctor she hasn't gotten much feedback (I have stopped watching her videos because they are boring as hell and she probably stares at the view counter and I don't want to give her the satisfaction).
Since the test results didn't give her any sympathy or attention she is going to try other directions. Her lames attempts to try to figure out at GP diet are probably just another part of her disordered eating.
I think its suspicious that she went out of state to have all these tests and was given the results and is being put in a "research study" but seems to have been given no advice on ways to help alleviate symptoms - I would have guessed that a doctor would have talked to her about diet (since it was supposedly a question she was going to ask) but now she is just delaying starting a liquid diet because she needs to e-mail the doctor to ask him if semi-liquid diet is okay (she seems to be questioning if its okay to do a mostly liquid diet - um if solids are hard to keep down and liquids are okay then obviously the answer is yes to the liquid diet).
Its a little sad that she seems to have so few people who care about her. She spends a little time with her parents and has a supposed boyfriend (I don't doubt he exists but I can't imagine that he truly cares about her since they never seem to do anything together other than trade a car back and forth). There is no mention of any friends. She is so desperate for attention and someone to care - which she might be able to have if she stopped spending every moment thinking about how sick she is

No. 385372

>>385355

The whole temple situation is very strange. She went to a motility specialist in a medical center (these clinics are not everywhere, people come in from all around the world to see these clinics). They are thorough..a motility patient in the clinic would have a team. The GI, the motility GI, (some places these are the same dr) a nurse, a PA and a dietician.
You meet the team your very first appt with the dr. And these dieticians know their shit..they work with some very sick people, they work with people with no stomach or intestine/colon, they know everything you possibly could about enternal feeding and TPN and every trick in the book to help these people live with the best quality of life as possible with the lowest risk possible.
I find it absolutely shocking and unbelievable the Dr didn't give her any real plan..even more so didn't discuss diet. (I think she said he recommended liquid diet earlier on but now it's he didn't talk about it)
Messaging your dr for this is nauseating.
As for the research it's strange she isn't offering anything other than she's getting 2 tests done. Personally I think it's her dr wanted to do the smart pill test (which she is probably counting as 2 tests) to get a better look at her motility..he may have some doubts over what symptoms she claims to have compared to the test results..unlike the GES the pill is hard to manipulate and it takes a long time but they get a much better picture of what's really going on..99% the time insurance will not cover this test unless every other tests has already been done and the dr still needs more info. Even then some insurance won't pay for it as it is a relatively new test (compared to other tests)
Also the research study could be as simple as signing a consent form basically it is agreeing to allow them to use your data/results in research studies.
they also will ask to use left over specimens for research but in both cases the patient is completely anon.

Maybe the Dr is waiting to see if the antibiotics help. Whatever bacteria she has can be a large culprit in her symptoms.
I'm curious about the biopsies..she used to go on and on about being lactose intolerant, being vegan and eating gluten free..i never believed her and I still believe that was 100% ED so curious what they say now.

Notice she didn't post a pic of her test results this time?

She is lonely but I think the main reason she is is because she has pushed everyone out of her life, she's a fucking bitch specially when she is manic.. she's very depressed and lonely and living alone in the apartment all the time doesn't help the depression and loneliness and turns to what we see now.
It is sad and I feel sorry for her but at the same time she is doing nothing to better the situation when she has the ability to do so. I hope she gets to the point that she is ready to have a life and live life before it's too late.

She made a post saying she had to stop her pain med a week before her GES. On another site she posted she stopped her pain med 2 days before her GES.
I'm so surprised the Dr told her a week..when motility issue is even just suspected they tend to have you stop meds weeks ahead..if your motility is so slow it's going to be just as slow getting out of your system things still just don't add up properly.
Something is fishy.

Her anxiety is suddenly through the roof to the point she doesn't want to leave her apartment..been whining for a couple weeks..yet she's going out and about and have had zero mention of anxiety that bad in years.
Probably causes by her special GP because you know every tiny thing is because of her mild GP.
I broke a nail-thanks GP.
My GP is so severe I coughed from it last week.
I'm dying.




Sage for long rant number
Just a lot to catch up on and a little break from jaquie lol

No. 385373

>>385171
CPL had some weird leg brace abductor things (can't find a good screencap from the television show right now) which is why she needs her sooper spesh wheelchair from a movie set.

But apparently her legs are paralysed so how would braces help then?

But nowhere do you see her wearing them any more or have her legs elevated she's cross legged in the seat

No. 385378

chronically jacquies service dog video pisses me off, I hate how so many people nowadays have service dogs they don't even need and then use it as an excuse to be an ass

No. 385386

File: 1505194787936.png (593.33 KB, 687x1043, Screenshot_2017-09-11-22-33-06…)

>>385046
>>385070

It's part of her "seizure nest" to keep her calm as she comes out of a seizure. No mention of her precious nebuliser though.

>>385111

Sophie has a Patreon page?

No. 385387

File: 1505194964124.png (1.02 MB, 687x1051, Screenshot_2017-09-11-22-41-03…)

She finally got her mask and braces!

No. 385397

>>385387
Jeezus tapdancing Christ this bitch infuriates me.

No. 385404

>>385397
She's disgusting and just so unnecessary.

When did braces become a security blanket? Just put them in a fucking straight jacket..as many braces some of these people use at once might as well.

I'd LOVE to know which special brace "protected" her from nausea. (Wth does that even mean?)

No. 385408

File: 1505202949886.jpg (444.99 KB, 1080x1609, Screenshot_20170912-022933.jpg)

>>385355


Just her talking about how much she weighs now and talked about losing a bunch of weight and how much she is suddenly struggling with her anorexia again.

I'm not sure what her plan with this is going.
Im thinking she's going to cry"my special anorexia is so "severe" again and I have "severe GP" so I can't maintain my weight even if I try."

She is going to fuck herself over with this plan of hers.
I won't be surprised if she starts cancelling temple appointments and eventually just stop going if they don't do what she wants/when they do more evaluations (Including psych)

No. 385414

File: 1505204156399.jpg (240.22 KB, 295x523, justwrong.jpg)

She deleted this one.
"Chronic pain syndrom=CRPS"
"CRPS is often accompanied by chronic illnesses"
"CRPS influences the pain level."
As in feeling pain differently, because you can't feel minor pain anymore(her explanation).
At the end of the post she wrote, that she's 26 and has pain for 13 years now. And after she edited it, she mentioned that it's okay to cry sometimes.

Her answer to a comment: "Do you have chronic pain or chronic pain syndrom? Please share the article"

How can you be an abassador for rheumatism and not know what chronic pain is? And so far I haven't found a single person who thinks that Chronic pain syndrom is CRPS or has to be mentioned, when you have RA. So freaking annoying!

No. 385430

On Janice's latest vlog we can see Jaq is sitting cross legged on the dining chair while they're playing board games. Then she's sitting with her legs crossed (one foot on the ground, one leg over the other) and madly jiggling her legs with excitement. Doesn't seem to be uncomfortable whatsoever. Yet her EDS is SO BAD you guys!!

No. 385432

>>385386
this bitch can straight up fuck off. How annoying is "seizure nest"? I'm pretty sure any doctor concerned about this many seizures wouldn't just let her be in her wittle safe space wif her teddies and bubble light.

No. 385440

>>385432
I'm pretty sure here seizures are non-epileptic in origin (psychogenic) Another MBI in need of therapy

No. 385441

>>385440
She realised she couldn't get enough attention from her mental illness, so started on the physical stuff.

No. 385452

What's with all these 'flares' anyway? I have EDS, and it does not flare! Gastroparesis does not flare. Somatic symptom disorder does not flare. Epilepsy does not flare. Even POTS does not flare. If you don't have an imflammatory disease, you don't get flares(!)

Please, come on people. You can have bad pain days, days where you are suffering more, more symptomatic or just call them 'bad days' (what's wrong with that, suddenly?) but don't talk about flares, being in a flare, your disorder flaring or having a flare up if you don't have a disease that HAS flares.

Saged. Rant over.

No. 385458

Nobody have any updates on jonezie?

No. 385461

>>385452

"Flare up" sounds more medical and dramatic than "bad day".

Also, I rage inside when the twats say "flair up".

Sage for rant.

No. 385462

>>385458

She's changed her last name on Facebook. Not sure why. Trying to hide for a bit?

No. 385463

>>385386

Ugh fuck me, even a picture of that light quality is fucking with my eyes. That would likely make me more prone to a seizure, not calm me down after having one. And call someone after a seizure? No. If she's not having a postictal period where she can't do anything but lie there and be alive, then it's not epilepsy. You're not gonna call your SO sobbing as soon as you break out of a seizure.

>>385452

Epilepsy doesn't flare, but we do go through times where our seizure threshold is lowered for a variety of reasons, and so are more likely to have seizures. But if she went to a neuro with any amount of regularity, she would know that.

No. 385465

>>385461
I guess that's it. It makes it sound like there is actually a disease or some other process wreaking havoc in your body. You know, damaging your insides or whatnot. Like there is actually something physical that can clearly explain why you are having more pain or symptoms on a certain day. And while there could be very valid reasons for having more pain one day than the other with a non-imflammatory disease (e.g. wheather conditions, overdoing it, or of course a very obvious one for EDsers would be a dislocation that is outside the norm for you personally.) But for almost all of the discussed disorders, that does not mean your disease is progressing, more 'active' or becoming worse. It just means you are having more pain today, or this week.

But I guess you're right, that doesn't sound 'bad enough'? Or maybe it's just become a habit that the 'spoonie community' copied from people with imflammatory diseases? It just shows how many people will use certain terms without even knowing what it means. Next, they'll read an MS'ers instagram and start calling it a schub.. Because you now, that's what THEY call it?



Can you people hear my eyes rolling over here? I think I need to go to hospital for it, really. It's not normal, is it? I'll post a hospital selfie later, with my IV showing, of course. </sarcams off>

Saged for rant - again. I will go back to work now.

No. 385468

>>385463
Re epilepsy: of course, and with other disorders, there can be reasons too for being more symptomatic. Sometimes it varies from day to day, and sometimes there can be periods lasting days or weeks, even months where one can be more symptomatic. And sometimes that reason can be very clearly defined. And yeah, most of the disorders I mentioned can - for some patients - even become worse over time. That's still not the same as a flare though, and it also doesn't mean the disease is progressive in a way that (most) muscular dystrophies are. But most munchies/OTT spoonies don't seem to know this distinction. Or even care about it.

No. 385470

>>385465
Please don't forget to post a selfie with your EMT during the ambulance ride.

Sage for adding to sarcastic sage rant.

No. 385472

>>385404
She used her vogmask to block out smells that could cause nausea. An actual use for vogmasks. Reading comprehension, mate.

No. 385516

>>385414
Yeah CRPS is def not the same as chronic pain in general. It's also not invisible, so it's usually hard for munchies to fake a swollen or atrophied limb that's red or purple, and ice cold. And if a munchies did somehow have CRPS, you know damn well they'd be posting photos of their deformed limb constantly.

No. 385531

>>385472
I'm too embarrassed by the munchies to even try wearing a vogmask for its actual purpose, even though they're helpful.

No. 385551

>>385465

Nope, the 'schub' terminology has largely been replaced by flare in the English-speaking world as MS research ceased to be an ar a of German dominance around the 1980s or so.

No. 385556

>>385465

I think largely it's because the impact of most of these conditions tends to be relatively multifactorial and thus subject to immense variation. People with chronic pain, for instance, tend to note that some things do make their pain worse over time: whether they're on their period, whether they have had enough sleep, whether they're in a good mood and so on. I sometimes encounter patients who report that they're in a flare. Some have an inflammatory issue, so they get their W and CRP measured and we can see what's going on. But every once in a while, we get normal W, normal CRP, normal WBC and occasionally a condition that just doesn't tend to flare. So I keep asking about their recent weeks and eventually it turns out something is on their mind. Money troubles, relationship troubles, etc. - the point is that constant pain plus mental stress reduces coping resources and increases the sensation and perception of pain. Even if your pain doesn't flare, your perception of it might have the up-down character that disease severity in periodic inflammatory diseases has.

So eventually, as EDS folks hung out other spoonies (mainly with RA or other inflammatory issues), they adopted their perception of their disease having fluctuations in severity. This is not unreasonable because otherwise, they would have to admit that they do have some control over their pain and disease impact and as such they're not powerless poor little spoonies. And we know from the fierce resistance obese spoonies deliver when losing weight is suggested to them that hell hath no fury like a spoonie being told they can actually do something to feel better.

No. 385586

It is absolutely amazing to me how both Jaquie and Janiece have so much energy to play board games yet can't do much of anything else at any other time. Loud, animated board game during hurricane? Check. In today's video they were super loud while playing. Why didn't Jaquie need her precious earphones?
Another thing I do not get is how she is now completely unable to walk around her home without her walker. Seriously??? I've got nothing.

No. 385599

>>385516
Don't point this out, otherwise she'll block you.
CRPS is so nasty, but let rheuma_esgibtkeinzujung handle it. She'll find a way to fake it.

No. 385615

File: 1505247240884.png (151.16 KB, 640x1136, IMG_0182.PNG)

Zithromax, which is a five day antibiotic round, every six months at least to not build up resistance, is part of this warrior's daily fight against Lyme disease.

No. 385630

File: 1505249200520.jpg (216.51 KB, 1052x999, Screenshot_20170912-153824.jpg)

Here's another case of a spoonie calling one disorder 3 different ones. She also puts GERD on there, it's just fucking acid reflux bitch. 100 food allergies seems absurd.

No. 385632

File: 1505249259371.png (1.42 MB, 1012x1796, 20170912_154238.png)

Same as above, this is how I found her. Hate makes her POTS worse? KEK.

No. 385638

File: 1505250072120.png (46.9 KB, 659x635, wtfsme.png)

The chronic fatigue community on tumblr is hilariously OTT. I can't call them munchie, given that chronic fatigue/myalgic encephalitis/fibro aren't actual illnesses with a physical treatment. So them complaining about an imaginary disease state to begin with means they're at least not faking a real illness.

However now they're rooting for all their worth that it's an autoimmune disease.

Anyway, here's https://severe-m-e-andchronicillnes-blog.tumblr.com

And their purple prose of their imagined suffering is pretty fucking amazing.

Danni, a fellow fibro warrior, has her own webpage as well. http://dannithepurplepenguin.tumblr.com/

I love how clear the mental illness is with these folks.

No. 385650

>>385630

Funny thing, I used to wonder why everybody had such a vast number of diagnoses in their bios, like 28 of them? And at first i pitied them greatly and counted myself fortunate not to have as many diagnoses as them. Eventually I realized it's part of their point system and they list symptoms as diseases. Symptoms that are usually just compassed by one or two disorders, but that they pathologize and turn into a separate entity instead of just a symptom. But since everybody has EDS and POTS now, just listing EDS and POTS in your bio doesn't turn any heads, I guess. Gotta include everything in there, even if its just an incidental finding you only know about because of the 8 million tests you subjected yourself to, so everybody knows the gravity of what you're dealing with! Oh and specific numbers of how many allergies you have, or how many symptoms you have (I'm looking at you, Carmel) are even better.

Sage for pure condescension and slight blogging.

No. 385661

>>385650
>>385630

And the truth is, syndromes like POTS are really just a collection of symptoms in the first place. That's the only way of quantifying it, as a collection of symptoms that are theorized to be caused by a malfunctioning autonomic nervous system. So no, you dont have to say you have pots AND dysautonomia (which isn't even an actual condition, just an umbrella term) AND list all the symptoms you have as additional diagnoses. A lot of "potsies" use the term dysautonomia as if it is an actual pathological process, when it's just a category that several syndromes fall under. (medfags correct me if i'm spewing misinformation)

saged for ramble rant

No. 385664

>>385661

Exactly it's like saying 'I have diabetes, high blood sugar and a insulin dependancy…' They are all the same bloody thing.

No. 385685

>>385615
T3 and T4???? Wtf.

No. 385686

File: 1505254328261.png (310.45 KB, 1080x1707, Screenshot_20170912-230340_01.…)

>>385132
HMG must be keeping an eye on what's being said here.

1/2

No. 385688

File: 1505254378422.png (152.42 KB, 1080x935, Screenshot_20170912-230350_01.…)

2/2

No. 385689

>>385661

Well, technically dysautonomia is a pathological process, and POTS is more like one manifestation. So it's like saying 'I have a canine, a mammal and a dog'. POTS is one of a number of dysautonomias. Some dysautonomias are much more severe, in fact, at least one (AD) can be fatal. So I think it's a case of making a benign condition that is aetiologically similar to some much less benign ones appear more serious than it is by lumping it together with the nastier ones.

No. 385690

>>385638

What do you mean they aren't real? They're very real with actual diagnostic criteria and treatments. Sure, the munchies might be crazy and blow them out of proportion, or claim them when they don't have them, but descredit the person, not the diease.

Saged for rant

No. 385693

>>385630

I can tell you with confidence that's not even possible. Not with a proper allergy test anyway. Anything above a dozen or so means there's probably an underlying issue like eosinophilia involved. Standard panels (not your chiropractor approved bullshit tests!) don't even check for that many. This is insane.

No. 385697

>>385690

Eh. It's at the very least controversial whether they really amount to separate conditions. Most cases can be explained better than by a disease for which not even actual objective evidence exists. Deconditioning, malnutrition, vitamin deficiencies, obesity, depression etc. alone are sufficient to explain most cases of 'chronic fatigue'. Myalgic encephalomyelitis is an even funnier name, because proof of encephalitis or myelitis is apparently not required for diagnosis. Lolwut.

No. 385702

>>385465
Very true, EDS and friends don't flare. There are days where the pain/symptoms are maybe a little worse, but it's always the result of something, not just randomly. Like for me I will have increased pain/symptoms for lots of reasons like I slept on something wrong, I fell down, I picked up something or moved in a way I shouldn't have, I'm on my period, I'm emotionally upset, I didn't sleep well, I'm tired. Of course none of those are excuses to be a whiny attention whore no matter who you are

No. 385703

File: 1505255105735.jpg (75.04 KB, 540x462, IMG_0295.JPG)

>>385638

My favorite is them making fun of people who suggest bullshit natural cures for their illness. Uh, ok, but where did THEY get their MD? Perhaps that would be pertinent to ask when they next decry their physicians as ignorant or uninformed when they're not getting their way.

No. 385709

>>385686

Oh joy, more taxpayer $$$ for HMG's super serious 'FND'.

I'm sorry, but this pisses me off. HMG has FND, meaning he has nothing organically wrong with him and as soon as his copious mental issues get fixed, he will be able to walk again (whatever he claims his doctors said about never walking again… lol no, who even says that to someone with FND? It isn't even good practice to say that in the case of complete SCIs, never mind FND, which is a far cry from irreversible damage!). So while the local authority paying for his kitchen reno might not know what FND means and think it's serious as soon as they hear 'neurological', there is no reason at all why he should be given a kitchen courtesy of the taxpayer when he just might recover the next day with no sequelae.

Of course, we all know how this story ends. HMG will not recover. Why would he - he doesn't need to work and he is enjoying his entire life bankrolled by daddy and the government. It's much more fun than working 9-5, and he doesn't exactly have an abundance of qualifications, having been a professional benefits recipient for the last few decades.

No. 385712

>>385709
So wait… this means nothing is actually WRONG with him? I haven't heard of this condition in detail? Just the name. This is highly interesting.

No. 385718

>>385712

Their symptoms are real but the cause is psychological.

No. 385719

>>385718
I mean, "they" as in people with FND.

No. 385720

>>385712

Functional Neurological Symptom Disorder aka Conversion Disorder in the DSM-5. It will be recategorized as a neuro disorder in the ICD-11.

No. 385724

>>385718
Okay yeah that's what I meant by wrong I guess. Nothing is wrong physically is what I meant. That's very interesting.

No. 385725

>>385718
Not always. It can be caused by something physical like an infection or pain

No. 385729

If you are interested in the quandary that is conversion and somatoform disorders, look up Adam Maier-Clayton. He suffered from Somatic Symptom Disorder which manifested as severe chronic pain as well as other psychiatric illnesses and was campaigning for the right to die. He recently killed himself.

No. 385735

>>385638 I don't think that's a fair statement to say. ME/CFS is a real illness with real symptoms. It's not the 80's anymore. There is so much recent evidence is suggesting That ME is a physiological illness, including a study in Norway that's showing Rituximab [chemo drug] letting people recover (against a placebo, and I'm also pretty sure it was a double blind trial but don't quote me on that). The evidence is there and you can't just say dismiss it because of a few over the top tumblrinas and instagram munchies.

Please let me know if I've saged/replied correctly. I got far too used to the temp board and I'm still figuring this board out again.

No. 385736

^sorry for the typos, new phone. I have no idea how to use it.

No. 385738

File: 1505258439432.jpg (26.61 KB, 433x380, arcdecercle1.jpg)

>>385725
okay, to put this into some historical perspektive. That old known "illness" of hysteria that women in the 19th century, beginning of 20th century had is something that later formed into the psychiatric term "conversion disorder".

Neurological symptom disorder is now just a nicer and less stigmatizing way of saying it, but it stays the same. In severe cases people go blind, paralyzed or otherwise left with impaired function. Due to more widespread knowledge about the psyche this illness is merely extinct in western countries, but it is still common in third world countries.

conversion disorder doesnt mean that someone is faking it but it's very similar to munchhausen. the difference is that someone with conversion disorder is actually functionally impaired and munchhausen just fake illnesses by whatever.

TL:DR he has munchhausens and is faking it.

No. 385740

>>385735
nevertheless it is an illness that can be easily faked by attention seeking idiots. remember the time when everyone on tumblr had borderline personality disorder when it was hip?

No. 385746

File: 1505258818699.jpg (539.06 KB, 1080x1449, Screenshot_20170912-174759.jpg)

MLS must really be desperate for more/different attention.
She is going on about how strong her voices are and how badly she wants to starve and exercise..at least she realizes the Drs will base her condition/treatments on
her ED, and/or think she is trying to get away with her ED.
Her new blog is milky..
she talks a lot about her ED -loud voices want her back (what does that even mean?)
Still malingering her sick ED days and treatments-exercise restriction for over 5 years.
BS. She says she has unknown heart problems she sees a cardio for and has heart meds, and exercise actually would help her heart and many other organs and they have cardio physical therapy for a range of severity conditions.
She should be in it (if her issue is real) specially since her little walk the morning made her feel like she was going to pass out.
She's still complaining she suddenly can't regulate her body temperature..she starts off saying she's getting a migraine but she thinks it'll be a small headache. That's a huge difference..
She is drinking those sparkling flavored water Wal-Mart sells cheap. They are zero calorie..she needs to be drinking calories and Wal-Mart and dollar stores have all sorts of cheap drinks. There is no reason she can't drink and since her body has zero issue with digesting fluids and a perfect functioning intestine/colon she won't have issues with it (though she will lie about that)
She's worried she will have her food stamps lowered and worried she may not get it renewed for the year. Made comments about "needing it raised because supplements are so expensive…."
She hasn't once said what her 5 new meds are.
She talked about insurance issue getting a nausea week patch covered and one of the antibiotics..she could easily have the Dr change the med to one covered so she can start taking them. I think she is going to drag it out to delay taking it as long as she can.
She can get on her online chart and read her results like she did with her GES, to see what the bacteria is.
Her voice is bad from acid. Then goes normal and then a mix while she tried to explain why her voice changes….she hates everything right now. That comment made me gag.
She's sickening.

No. 385749

>>385685
those are thyroid hormone substitues, T3= triiodothyronine and T4 = thyroxine. I also take those (but only those) because of hashimotos. It's kinda uncommon that T3 is prescribed depending on region because usually you get along with only T4 (which is then metabolized by the thyroid into T3 which is the main hormone of the thyroid to have an effect on the metabolism) but for some this just doesnt work. Im not actually even mad about those. But… of course he does have to mention it for extra munchie points.

Mirror, mirror on the wall, who is the sickest munchie of them all?

No. 385754

>>385738
It's now fnd to include medically unexplained symptoms which are not psychological in nature. HMG has said that his is linked to his EDS. He is certainly ott, but why fake a disorder like fnd?

Hysteria has never been proven.

No. 385755

>>385638
>most severe pain!!
>just the tip of the iceburg
>i shant explain more lest i perish!!!
>just another day in the life

the dramatics! its like a fucking play. who could say they honestly believe that that is a reality everyday and not some made up fucking garbage??

No. 385759

>>385754
If they're saying it's a functional disorder, I doubt he even has EDS, because otherwise his symptoms would probably be attributabed to that. He has symptoms with no physical cause, so not EDS.

No. 385761

>>385630
100% allergic to food and friends with Carmel? Sounds more like an eating disorder to me.

No. 385762

>>385630
It's easy to have 100 food allergies when you count lactose intolerance as seperate allergies to milk, cheese, yogurt, cream, chocolate and follow the same pattern for all foods.
Can't tolerate fructose? Call it hundreds of allergies to every individual fruit and boom, you're a hyperallergic spoonie and people will say they are amazed you're alive.

No. 385771

Sage but has anyone ever noticed MLS randomly raises her eyebrows when she talks, and it doesn't correlate at all with any emotion or what she's saying? It makes me really uncomfortable. It's like she's putting it on on purpose to try and 'emphasise' what she's saying to make it shocking but it just doesn't match her tone or her facial expression or what she's even saying

No. 385775

>>385759
You'd be correct. If you have symptoms that are caused by a true physiological illness (and X amount of symptoms are often attributed to said illness), the same symptoms would not warrant an FND diagnosis. For example, pain in EDS vs pain in FND. If you have EDS, pain would be attributed to that, and FND would not be diagnosed. However, if you have a symptom like paralysis that is not seen (as far as I know) in EDS, and no other cause for it, FND would be an option.

No. 385776

>>385735

Sounds like someone has fibro and needs validation for their drag ass.

Here's someone putting a pin into the study you cited. Mostly because that study you cited sounds like 10 kinds of bullshit. Small sample size, no control group, and as of 2015 those scientists you were citing said this in their paper:

>We do not encourage the use of rituximab for ME/CFS outside of approved clinical trials, and this is especially important for the group with very severe disease.


You can find it here:

https://sciencebasedmedicine.org/chronic-fatigue-syndrome-rituximab-revisited/

Fibro/ME/CFS is bullshit and has no actual treatment outside therapy and lifestyle changes.

No. 385777

>>385776
Just to add to this, even the dr (Jonathan Edwards) who discovered rituxumab for Fheumatoid Arthritis has repeatedly expressed that he does not think it is a valid treatment for ME/CFS.

No. 385778

>>385771
Thank you! It annoys me to no end.
I think it's just her body language….since every little thing is emergent and severe when it comes to her so she's in the habit of raising them for majority of crap she says

Ex-
I coughed once today. I'm headed to the ER because because my pain is a 12 since I coughed.
I have a collapsed lung/cancer/COPD/infection/CF/pneumonia(any big scary lung problem)

No. 385791

>>385093
maybe she's having a seizure every time she waves her arms around

No. 385793

>>385776
I'm in the camp that me/cfs might not even be a separate disorder, and if it is, it's rare. But munchies use it as an excuse for everything, especially when they're just lazy and out of shape. There is legitimate chronic fatigue associated with many chronic illnesses, but it's not a separate disorder like munchies claim. And with many of those disorders, the best thing to combat fatigue is exercise, which make munchies and spoonies alike scream "ableism". Why do something actually beneficial with no side effects when you can just add another unnecessary medication or treatment?

No. 385796

>>385778
ERs are limited in what they'll treat, too, in the fact that they'll only treat you for an actual problem. I'm sure we've all overreacted at some point and gone to the er, but if it's for a headache or a virus all they're going to do is give you saline, some otc painkillers, and send you on your way. They don't have time for bullshit. But munchies seem to think ers are there just for their own piece of mind. If you are sick enough to need an er, you're not posting on IG, you're it complaining that they're not taking you serious. If you have a problem that has you close to dying, you're probably not even fully conscious. Munchies see the er as a spa where they go to soak in attention

No. 385798

>>385793

I'm the anon in the post you quoted. I definitely agree– I have a rheumatological illness that comes bundled with the chronic fatigue starter pack. Which is why I see on the info posters in rheum offices the way they docs discretely position fibro as something that falls outside their range of treatment, and suggests a support group/group therapy thing.

I have no problem believing that someone might present some illness as perhaps predominantly fatigue. But as ME/CFS being its own clinical phenomenon, no. There are plenty of diagnosable conditions that include profound fatigue.

It's just people who have NONE of these, no inflammatory markers, no deranged blood values, no disrupted chemical values, essentially NOTHING wrong with them that latch on to this abstract disease that is in fact the only disease I can think of that demands no criteria outside someone saying they're tired and ouchy, but with nothing to back it up. Except maybe being obese/malnourished/dehydrated, all things that can be fixed by a behavioral change.

No. 385810

Sorry for blogging, skip my comment if you want.

Fully aware I'm at risk of getting roasted now, but I have CFS. It's fucking real. I was fit, healthy, running every day, getting straight A's. Then out of the blue I got a bad infection that landed me in hospital for a few days. Antibiotics fixed me right up and I was sent home but I had this crushing fatigue and all these other symptoms (PEM, widespread pain, nausea, swollen glands, IBS symptoms, bladder symptoms) but mostly fatigue. I couldn't fucking do anything. I fucked up all my schooling. Became house bound. Lost my life. I'm not the kind of person to accept something like that, let alone a fucking CFS diagnosis. But they tested me for everything they could think of, I saw countless other specialists. There was nothing but "CFS". I didn't even have anxiety or depression (apart from the normal "I'm house bound and suddenly sick af every day and that's depressing").

What's your explanation for that? Seriously, I wanna know. How does a person go from perfectly happy, healthy, fit young adult to so weighed down with fatigue they have hours every day where they can't even speak or readjust their position in bed. All within a week.

This happened years ago and I've made a lot of progress with, you guessed it, graded exercise therapy. It's been a really shitty thing to live with. I also have my doubts about CFS, but the criteria fits my experience, textbook. And there's been no other possible explanation given to me. And it pisses me off when people say things like "it's not a real illness" "you're just lazy" "you just want to be sick so you can get pity points". I'm obviously bias but none of that applies to me in my opinion. I've also seen this same thing happen to other people in my life. CFS is a real bitch, living with it is a god damn nightmare, and people giving it a stigma aren't helping anyone.

No. 385811

Speaking of ME/CFS has Chronicles Chloe posted anything milky recently in between her constant seizures and paralysed limbs that allow her to hold devices up in the air? I'm sure she "started out" as ME/CFS.

No. 385815

>>385810
I think it's a real illness but that there are so many people who are actually experiencing anxiety/depression and expressing it somatically (and then end up misdx'd), that it pollutes the clinical picture and you end up with a messy bucket of sadness and some genuine cases. Many people with CFS diagnoses in the spoonie community have ended up either seeing a specialist who figured out what was actually wrong, or have gone full on nuts and decided they have chronic Lyme. This is all the rage among the UK crowd - start with CFS, then get a Lyme diagnosis from Breakspear. Of course it's hard to sustain any sensible discussion of the illness when many of those diagnosed are either misdiagnosed (on their way to a different physical condition being caught) or mentally ill. But fwiw, I think people are massively oversimplifying by jumping to the "it's not real" crap. Is it in dispute? But so are loads of other medical labels. It may not be well-defined but there are real cases.

(Inb4 "salty" - no, I don't have it. Or fibro.)

No. 385816

>>385811
Saged for samefagging but yes, this is exactly what I'm talking about re. the crazy end of UK spoonies. She did start with CFS, and clearly has somatic issues on top of her ED/PD. Going down an avenue of ever more woo treatments and diagnoses is what UK-ers do when they're reaching the end of their ability to manipulate the NHS.

No. 385817

>>385810
Can you take your whining elsewhere? Nobody gives a shit about you being a bit tired and lolcow isn't a platform for you to campaign about how real your syndrome is or isn't.

No. 385818

>>385810

You're right, it's not normal, but not because you felt tired and fucked your own life up. It also makes you no different from any of the other cows, especially pursuing the countless specialists when time and time again that say you're fine.

Trust me– a few blood tests ordered by your GP can cover the range of anything that would be the cause of fucking your system up. I did get diagnosed with a rare rheumatological illness through blood tests through my first rheumatologist. Same doctor isolated further causes for my symptoms through other simple blood tests.

My point is: even rare illnesses are fairly easy to pinpoint with simple blood tests. If you start going off the rails and going to doc after doc, the problem is with your behavior and with your coping with the illness.

The docs just want to make it clear to you that you don't fall under any of their treatment regimens, so they don't have to waste more time or resources on you. That's why you're treated with graded exercise therapy, rather than any of the other expensive and punitive treatments for other diseases.

No. 385820

>>385818
Not the anon you replied to, but top kek at your oneupmanship. Try to remember no one cares how "rare" your disease is either. eyeroll

No. 385823

>>385820

I don't give a shit at how rare my disease is either. The point was to illustrate that blood tests show at least the starting point of all illnesses. Even weird shit– the idea that this one specific, prevalent illness has no serological basis is bullshit.

No. 385824

>>385820

even more kek for actually thinking that every condition can be diagnosed through blood tests.

No. 385825

>>385824

Holy shit, obviously not– it's not like there's an individual test for every one. But if you have hyperparathyroidism, you might have mildly elevated calcium. If you have some cancers, you have a high PTHr. It's not like the tests are definitively diagnostic all the time, and they obviously require a medical professional to link the pieces together. But yes, most conditions are going to have some mark on your system that can be found in blood, or stool, or urine, or spinal fluid, or whatever.

The idea that you need to go through an exhaustive amount of tests and an exhaustive amount of specialists to get a diagnosis is fucked.

No. 385833

>>385818
I'm fully aware that my GP likely would have picked up on anything obvious. But guess what? When their blood tests don't show up with anything, but a previously healthy person is now disabled by an illness they can't pinpoint, you get sent to…. (Drumroll please) a SPECIALIST. That's what they're there for, dumbass. Just because I got sent to a specialist or two doesn't mean I WANTED it, or because I'm a munchie. It's standard course. I never actually requested it from my GP. I just kept getting symptoms she couldn't explain so instead of being an incompetent doctor, she did her damn job. Wow. Crazy right?

Also, just because there's no blood test for CFS yet doesn't mean it's not real. Medical science is pretty fucking rad but they don't have all the answers (yet). CFS research is appallingly underfunded because of people like you who see someone with CFS and say they're "just tired". It hasn't been taken seriously since.. ever. Not surprisingly, the people I see advocating the most for more research are often people who've personally witnessed the damage this illness can do. If you think it's not real just because there's no blood test, you're not just an idiot, you're ignorant, AND an asshole. And that's a bad combo my friend.

No. 385841

>>385823
Why are you still self posting oh my god just post something vague and passive aggressive on Facebook to get your fix, nobody csres

No. 385844

>>385833

Know what, you're right. I'm jaded from being on this thread too long. Good job on making progress, and I hope it works out for you.

No. 385890

File: 1505286788304.png (2.26 MB, 1440x2560, Screenshot_20170913-015528.png)

She sounds like an addict "someone please give me a reason to stay in recovery. Please. I need reasons"

"I can't stand my new body.(having it for 2 years is new?)
I can't stand my weight, how I look, recovery body. It's just not for me.
I forced myself to eat bland stuff earlier.
I don't want to be this weight anymore but if I loose they will blame it on my anorexia which won't help with my gp dr and won't help my GP, so I have to stay in recovery. I just don't know how anymore. The voices are so loud.
Then she starts jonsing for help staying recovered again.

I know she didn't recover from her ED like she claims and manipulated that situation while she focused on physical illness and use a "hidden" ED to make herself appear worse off..but why is she all the sudden publicly all over the ED again? I can't help but wonder why and I doubt it is just the timing..after the motility appts.
I'm wondering a lot about the test results..im questioning if she was honest about the 40% and the dr was suspicious of the situation when he saw the results to all the testing. I think she's running back to her ED as a safety net in a way..now she has opened it up to making sure she is sick with something for attention. Specially if Temple is suspicious about it..she didn't prove her test results other than an immature in your face post with the GES..she didn't give detail on the new treatment +5meds, vague about the other tests (we already knew about the acid and throat. Her throat is "weak" due to purging and acid and having it stretched once before.) Didn't see a dietician at the clinic, didn't talk about any detail other than he focused mostly on her nausea.
She's sickening

No. 385904

>>385810

Define 'real'.

For instance, when it comes to what I treat, 'real' means objective evidence for its existence and distinct nature as a separate pathological entity. As a gastrofag, most conditions are objectively ascertainable, yay. I am, however, aware that other specialities have fewer objectively diagnosable conditions.

But that doesn't mean patients with 'nothing wrong with them' aren't legitimately suffering. In a sense, all pain is mental - the brain has to conceptualise it somehow, and that means that just as some people are able to not conceptualise painful stimuli at all (such as people who have done various meditation techniques for chronic pain), others' brains find pain where there is no physiological reason for it at all. There is absolutely no necessary contradiction in saying that (1) ME/CFS probably isn't a real disorder, in that it does not represent a separate pathological entity, but (2) people who claim to have it are very clearly suffering. Somatisation disorders, conversion disorder and other somatoform disorders are ultimately all instances where something goes wrong in the brain's perception of its body's state, leading to an unwarranted sense of danger or damage. That's what makes them so hard to treat.

No. 385905

>>385811

…before a vaccine gave her a genetic disorder. :/

Top kek.

No. 385906

>>385833

> Also, just because there's no blood test for CFS yet doesn't mean it's not real. Medical science is pretty fucking rad but they don't have all the answers (yet).


Actually, most of the answers we don't have are in the 'how does it work?' and 'how do we treat it?' department. Whatever answers we are lacking, there aren't droves of conditions we can't diagnose or haven't discovered yet. This is a very appealing fallacy many patients love engaging in: the belief that because absence of evidence is not evidence of absence, objectively green tests across the board mean that whatever they have was not tested for, rather than that they're physically healthy.

Except as the number of tests converges to infinity, absence of evidence does converge to evidence of absence. There are no mystery diseases anymore, really. Sure, we don't know how a lot of things work or how to best treat some illnesses, but we have a pretty decent idea of what's what.

So when a patient turns up complaining of fatigue, we - well, your PCP, usually - run a bunch of standard tests. Normally, most causes of fatigue either show up on CHEM20 + CBC, or they have a noticeable effect. The idea that you can have fatigue that does not affect any other system and is not reflected in your blood biochemistry is not impossible, but very, very rare. So sometimes we do more complex tests, and we might do some imaging to try to find out what's going on. But at the end of the day, if all has come back negative, you are probably fine, and the problem is between the ears. That's way more likely than having a mysterious fatigue disorder that otherwise does not cause any objectively ascertainable symptoms.

TL,DR: there aren't really any mystery conditions around. I don't think anything new has been discovered in my speciality area since I finished med school, and it probably must be the same in most fields, save perhaps an increased prevalence of GI vascular motility syndromes (which many of us do think are bullshit diagnoses to begin with).

No. 385912

>>385746
aww it's my favorite super model. she'd get more attention from me if she took that stupid looking piece of metal out of her mouth.

No. 385913

>>385906
Almost no causes of fatigue that don't show up on blood tests? What to think of sleeping disorders? MS? Heart disease? Medication side effect? Myopathy? Even some infections? I think there are plenty. Also, some diseases can be emergent, especially for things like MS and myopathies, someone can have fatigue and mild but difficult to pinpoint symptoms for years before tests clearly become abnormal.


My two cents on CFS: I think it's a very heterogenous patient group with at least two kinds of patients: the patients that have a medical problem that isn't dx'd yet, the patients that have a somatoform disorder and MAYBE a third group of patients: patients that have a disease that we don't know about yet. In any way it's too simple to just say "it's not real". It's real in the same way chronic pain is real: of course it exists, it just can have many different causes and it's very, very probable not a seperate disease. But for those patients that clearly suffer and have no other clear dx, a dx of CFS may be useful. If only so that they can answer the question "what is wrong with you?" and to end the search for a definite dx that for many will not come any time soon, or maybe ever.

Saged for obvious reasons.

No. 385952

>>385913

Sleep disorders: have some pretty common markers. OSA, for instance, tends to cause a high Hct and RBC. That plus fatigue should generally start an investigation and possible PSG.
MS: anti-MOG antibodies in blood plus oligoclonal bands on a CSF gel electrophoresis
Heart disease: normally, fatigue in the presence of high CRP would make us check for ANA and other autoinflammatory titres. If those come back low or normal, you score a visit to the cardiologists!
Myopathy: depending on type, we'd expect LDH or other muscle markers to be elevated.

It's perhaps not always in the blood, but there tends to be objective evidence for fatigue somewhere. Slapping a bad diagnosis with no directive power onto patient's just because we feel this is the best we can do pending a full unraveling of their complex issues is sloppy medicine. It's tempting to satisfy our patients' desire for answers with a diagnosis that can justify us continuing to treat the patient when in reality such diagnoses can often become a self-fulfilling prophecy. I prefer telling patients I don't know, and plenty of them understand that sometimes we can do useful and beneficial symptomatic treatment rather than blowing another $10k on another test that's just not going to yield any results, but we owe it to ourselves and our patients to do so overtly, and not by slapping various diagnoses onto them when these are not warranted.

No. 385955

>>385952
Fair enough, but that's not the standard tests a GP would run.

And you're honest. I appreciate that. Telling patients you don't know the exact cause, but that you can still help them manage certain symptoms. Unfortunately, for many doctors "all tests negative" means they stop treating the patient. Also, the system in some countries is set up in a way that doctors cannot treat (or rather: bill) w/o a dx. So there's that.

And as a psychfag and someone who thinks that pragmatism isn't always bad, I would desperately want to research if a dx of CFS, fibro or whatever with proper explanation will have a different effect in terms of doctor-shopping and illness behavior vs giving no dx. In the internet-era, I suspect that there will be patients that will keep looking for a doc that will dx them with CFS or fibro or whatever disorder is out there that looks like what they have, simply b/c they want a name. On the other hand, there is that self-fulfilling prophecy you mention that could definitely be a factor for some, and this is where the internet can truly be toxic (which is evidenced I think by the content we discuss here).

I would just want us to be able to predict the best outcome for a patient with this kind of symptoms. I think a good explanation and best of all, a good primary care system will go a long way.

No. 385956

>>385952
it may be sloppy medicine but it is regularly practiced, as I can testify.

No. 385967

>>385955

> doctors cannot treat (or rather: bill) w/o a dx


Not to nitpick, but there are PLENTY of codes that are reimbursable and have been designed exactly for this purpose. A lot of the NOS and OSD codes are used to allow clinicians to treat based on limited information and a potentially wrong dx. Not everything in ICD-10 is a disease entity or dx, as we have seen in the case of the Munchies here who don't merely suffer from T1D, but also have IDDM, insulin dependency and high blood sugar :D so really, I'm not buying the excuse that a bad diagnosis that lets us treat the patient is superior to no dx at all, which would preclude treatment.

No. 385974

Janiece begins her day with "stabbing stomach pains": https://youtu.be/C0LuNwtpHLs

Now that the hurricane is over, as one of y'all predicted, J & J return to vlogging about pains.

Paul seems to have left the building. Judd must have brought the National Guard to rescue him. ;)

No. 386095

Jaquie is going to stay at her dad's in Orlando (I am sure Paul and Janiece are thrilled) and she was vlogging on the car ride over. The stop lights were out and she couldn't figure out why people were treating it as a 4 way stop.

No. 386155

>>386095
Dear god. And she's whining about how she 'declined' over the past couple of days. Sure looked like it.

Her dad just got out of the hospital for what I assume is a legitimate medical need, and she's going to shove all her drama on him at the same time. Janiece definitely didn't seem sad for her to go.

No. 386170

>>386155
I did not rewind the video, but did Jaquie say that HER FATHER made dinner? He was just released from the hospital!

I'm sure both J&J feel wrecked as the adrenaline surge dissipates. Anyone in that situation would (or DOES since people are still on edge, finding out their homes have been damaged, destroyed, flooded). The symptoms of an adrenaline dump often mimic chronic illness symptoms. And every single woman on the planet is exhausted after three days with her bestie, even if the visit isn't attached to a scary situation like a cat 5 hurricane.

I am disappointed in J&J. I thought they were strong women. I expected them to use their creativity to show the chronic illness community how to maintain their health for a few days during the disaster and after, while the medical community catches up. I did not expect them to start dialing doctors before phone service was even restored.

Come on, J&J. You have talents, you have sass, and you have an audience. Use it to show us something.

Join forces. Train dogs. Teach people to feed them well. Photograph dogs. Create sassy, semi-offensive greeting cards for the chronic illness community using photos of Harlow and Orion. Jaquie can photograph and we all know Janiece can write sassy one-liners.

Sorry for going from observing to saging, but, enough already.

No. 386175

>>386170
Not only did her father make dinner, but she is whining continuously about how she just wants to go home. Well maybe she should be grateful she HAS a home to go back to.Not everyone in FL was so lucky. She is so self absorbed, it's amazing. And I still can't believe she goes on and on about how she can't get her around her home in her walker the way it's arranged right now bc of the flood preparations. She has allowed herself to become so deconditioned it's shameful.

No. 386189

>>386175
The "going home" whine. Over and over. Again, a chance to model for chronic illness folks how to adapt when you can't go home. There are families in FL and TX reeling from these events. You know Judd won't be whining about anything.

Jaquie's father prepared food that she could eat "safely" and then he seemed so grateful that they were together.

Her mother seemed rather silent or possibly edited. She does not seem like the silent type so she may have said what a lot of moms were thinking and J edited that out.

Her mom [I think] was sleeping at the hospital but I could be wrong. But she's been away from home, too, so I'm sure she's exhausted, in pain from sleeping on chairs if she was staying at the hospital, and overwhelmed, too. And she has to go back to work!

No. 386190

>>386189
I get the feeling that her mom is less than enthusiastic about the vlog.
Somewhat off topic I wonder if the CNA will be making another appearance?

No. 386195

>>386190
The CNA will have to if Judd remains deployed, I would think.

No. 386208

>>386189
Putting aside all of Jaquie's demands it must be really complicated for her mother to be primary carer for her ex-husband. She's probably finding that awkward at best and doesn't want to be filmed doing it.

No. 386209

>>386189
So her dad who just got out of the hospital was making special food for jaquie, who has a feeding tube because she "can't eat anything"??? That is really, really wrong and hope she feels pretty damn guilty

No. 386210

>>386208
I am under the impression that her parents have remained close despite the divorce.

No. 386211

Does it bother anyone else when you post something about a treatment/device that you legitimately need (ie a doctor prescribed said thing without you asking for it), and then you get a massive influx of messages asking how you got it? Like… uh… my doctor prescribed it because I actually need it?

No. 386212

>>386209
That's part of what drives me crazy about Jaquie. She has a feeding tube. She shouldn't need to eat yet she is constantly eating and going on about her safe foods.

No. 386289

>>386212

She also is apparently sick enough to need to drain her stomach, yet she can eat broccoli?!

No. 386309

>>386195
I still wonder how much of his deployments are ones he volunteered for. A lot of military members will jump at the chance of deployment to get away from their shitty spouse.

No. 386347

File: 1505358901224.png (117.83 KB, 750x935, IMG_3295.PNG)

fucking hell
"self diagnosed EDS" (and autism)

No. 386351

>>386347
There's quite honestly nothing I hate more than people who self diagnose. I'm about to go anon on their ass and comment. >>

No. 386354

>>386351
Bruh me too. Especially with something as fucking "complex" and multisystemic as a CTD.

No. 386355

>>386351
already did lol

No. 386357

>>386355
Like… EDS is a multi-complex genetic disorder with around 13 different types. You can't just "self-diagnose" yourself with it. Like which type are you referring to? What is your evidence? Fucking ridiculous, honestly. Unless… oh wait.. you went to school to be a geneticist!!! Sounds about right. I'm very sick of this spread of encouraging kids to self diagnose themselves with illnesses in the chronic illness community and on Tumblr. I see posts about it all the time. It's really dangerous.

No. 386359

>>386347
This kind of profile is exactly why no one "takes them seriously."

No. 386360

>>386347
I'm not entirely against self diagnosis, there was once a point, before munchies became a widespread thing, where people who are knowledgeable about medical related stuff and psychology, they can analyze themselves and find out what's wrong with them, now munchies and tumblr teens abuse self diagnosis, sometimes will even self induce their depression or anxiety to make it seem more real, people are beyond desperate nowadays to seem ill, mostly because of snowflake syndrome



ITT, when I was a teen, I was really interested in psychology as well as medical stuff, and took a lot of medical related classes, put my behaviors and symptoms together and came to the conclusions I was anemic with manic depression, I was never able to afford a doctor until I turned 20, lo' and behold the doctors did tell me I had iron deficiency anemia with manic depression, sorry for the blogpost but it pisses me off nowadays people try to make themselves seem as if they have every mental and physical disorder in the book and pretend to hate it


sage for blogging

No. 386363

>>386360
True. Like I guess I understand (being chronically ill myself but fucking hating the community) only YOU know your body best and what's wrong and going on inside it.. however I guess it's the way these fools go about it. Like you can't claim you have said illness if you've never been diagnosed with it. To me that's just not cool or okay with me. It you feel you have said illness I see no problem researching it, finding a path of testing or what have you, but don't go saying on the internet you are a warrior for it. You just look like an ass. This is the issue with the self diagnosis bullshit and the danger I see. Because you can think you have something all you want but sometimes it ends up being something entirely different. Not to blog post but, as an example I had strange and unexplained symptoms all my fucking life. For years they thought the "lesions" on my brain were MS, turns out they were just scarring from horrible migraines. Years later I was diagnosed with small fiber neuropathy and EDS to explain all of my symptoms. So you can't ever know for sure. But all that time I was "sure" it was MS.

No. 386386

File: 1505367132200.jpg (258.02 KB, 960x1280, tumblr_otyfmandU71vjfcwko1_128…)

>>379077
superpunkjellyfish.tumblr.com

admits to self diagnosing their conditions, and boy, do they have a plethora of them: http://superpunkjellyfish.tumblr.com/post/158907782680/about-me

they also claim to have POCD (pedophilic obsessive compulsive disorder).

No. 386388

>>385632
how can hate affect something that's caused when you go from lying to standing up etc?

No. 386394

>>386388
lol the hurricanes are devastating ofc but i'm loving the concept of someone calling them DISGUSTING and HATEFUL

No. 386398

File: 1505368875936.png (170.75 KB, 750x1120, IMG_8563.PNG)

Omgz eds legs!

No. 386412

>>386398
These people make posts about the most mundane crap.

No. 386425

>>386388

Exactly, i have pots and i guess i can see where "hate" could MAYBE effect by way of breaking down your coping mechanisms if being subjected to hate gives you legitimate anxiety. Besides that I really dont see how hate can actually make your dysautonomia worse.

No. 386429

>>386398
Literally no idea what I'm looking at, except very overweight legs.

No. 386430

>>386357

Hey now. How do we know this person did not have access to a genetics lab in their basement? :)

No. 386434

File: 1505375796056.png (142.99 KB, 750x987, IMG_5527.PNG)


No. 386450

>>386386
Actually they say they have Pure O aka POCD (primary obsessive compulsive disorder)
self dx of course, kek

No. 386478

>>386450
People in the POCD tag on tumblr either refer to pure OCD or "pedophile obsessive compulsive disorder" which is only substantiated by this weird website article http://www.louisvilleocdclinic.com/pocd.php

but yes, self dx to the max hahaha

No. 386480

>>386478
Yeah true, but they have said it's pure o in a post

No. 386491

>>386386

What the freaking shit is that.

No. 386521

>>386360
I still think it's best to say "I think I have this" instead of "I have this" until it's confirmed, especially since it could be a self fulfilling prophecy if you self dx (it can of you get professionally dx'd too tho).

When I was a teen I didn't have any issue with it, but I guess munchies and OTTs made me bitter.

No. 386525

>>386450
Pure O is actually so rare as OCD rolls eyes Most of the time it's just seen as having obsessions (preoccupation), which many anxious people have and don't have additional OCD. Especially if you already fucking have autism.

No. 386530

>>386450
It's "primarily obsessional OCD" / "primarily obsessive OCD" (i.e. Pure O) not "primary". Primary OCD would refer to traditional OCD with both obsessions and compulsions.

sage for psychfag

No. 386570

>>386525

Not to mention the people who conflate OCD and OCPD.

No. 386577

>>386570
ugh, yes! while you can have both, it's ridiculously rare and typically OCPD traits fall under OCD if that's the primary dx. but gotta have more condishuns on muh list! :3c

No. 386593

>>386491
A trans boy who is a self dx spoonie

No. 386599

>>386593
don't wanna sound petty by harping on appearances since this is supposed to be related to health things, but they don't even look human wtf

No. 386601

File: 1505402480641.jpg (177.3 KB, 1200x1197, IMG_4458.JPG)

>>386599
They don't act as if they are either. This is a screenshot from ask fm of them admitting to being predatory.

No. 386602

>>386530
Oh sorry, i'm not native in english. Thanks for letting me know

sage for not contributing

No. 386606

File: 1505402901777.png (188.9 KB, 750x1121, IMG_4459.PNG)


No. 386635

>>386386

They're a shit show. Claims Supernatural as a special interest of their "autism" to the point that they LEGALLY CHANGED THEIR DAMN NAME TO CASSIEL WINCHESTER, also has 4 supernatural tattoos. Is triggered by absolutely everything under the sun. They're one of the fucking ridiculous SJW. Constantly refers to themselves as a spoonie.

No. 386640

>>386635
This person is my worst nightmare lol. I wish the anon who found them would throw them back into the depths of the internet where they were found. This is probably one of the most disturbing things you guys have ever dug up. I kind of borderline feel bad for them because I feel this person may be actually genuinely FUCKED in the head.

No. 386664

File: 1505410498162.png (159.75 KB, 1423x735, IMG_0297.PNG)

>>386635

Sometimes, I feel a lot of spoonies and a lot of MOGAI/snowflake gender folks seem to be obsessed with being as special as possible. Have close friendships? Nope, that must definitely be something about your eeuper special weird-ass made up sexuality, right?

No. 386673

>>386386
Why the fuck does this pedo have so much shampoo?

No. 386681

>>386434
Lol so this is basically fine. She should do well on a gastroparesis diet and great on a liquid diet. But that's not speshul enough of course.

No. 386689

>>386681
Oh no..shes all over the whole nausea and getting sick shit still and she's suddenly fighting the liquids..like she emailed the Dr to see if she could do a liquid diet (apparently they decided to forgo the rest of the motility team which includes dietician which just never happens but I guess she's got to be special for better or worse)
Any dr reading those results wouldn't object to a liquid diet or puree diet and it's completely possible to get needed(100%) nutrition and hydration from an all liquid diet. So many different way to do that (she of course won't put that much effort into trying any diet and she'll just stick with foods that would hurt anyone's stomach)
I'm sure she will try to argue her throat makes it hard to drink enough.
Again B.S.. they make special thickening to add to liquids for people who have a wide range of very serious and very mild throat problems that will not hurt her super serious GP.
But anyway she emailed the Dr and last I heard she hasn't heard back and she's going on about how bad her ED is getting and not really trying to nourish herself.
3 liters of zero calorie drinks? Come on..why spend your precious food stamps on shit that's not going to do anything for your situation?
Gah she just pisses me off so much. Like a bad car wreak..i just can't look away -.-

Her therapist told her to drink 10 ensure a day
She flat out told IG she wasn't going to and she will have 2 a day.

I also love how they didn't seem to give her any help or really do anything. Maybe they are wanting to see if the antibiotics rid the bacteria and see how she's doing then because the bacteria can make the symptoms of GP worse so when treated it gets better and since she's always complaining about how severe her symptoms are….and maybe they are waiting for the smart pill test results.
I'm so so happy they are doing that one.
I'm sure the milk will be endless.

I'm just beside myself the motility dr wouldn't talk about her diet and dietary/lifestyle changes..thats like the biggest thing for any GI dr.

There's something fishy going on

No. 386703

>>385630
>>385638

I think most of these people have somatic symptoms from mental illness and blow them out of proportion.

I anxiety issues and often feel convinced that that I'm terribly ill physically, if you're not in therapy for your MI it can really go out of hand.

No. 386707

>>386689
I bet he did talk about it and she's just wanting more drama instead of following said diet

No. 386709

On Janice's vlog today she revealed she might have Crohn's and she has to have her gallbladder removed.

No. 386710

>>386709
I'm sure she's so happy.

No. 386713

>>386709
Huh funny, that's the same as her husband, isn't it?

No. 386716

>>386709
The symptoms of IBD includes diarrhea, often bloody, fever, weightloss
She never mentioned any of those, such a fucking munchie

No. 386718

>>386709

In what world is a cholecystectomy a first line treatment for Crohn's?!

No. 386730

>>386718
It's not, obviously. Apparently, her gallbladder function is quite poor. Her doctor suspects that is the cause of her pain and bloating. Other than that, her blood tests might indicate Crohn's.

Any medfags that can enlighten us on this? I thought that nuclear imaging test of the gall bladder (what's it called?) did not correlate with symptoms very well? Thought I remembered something like that, like how surgery isn't always indicated even if scanning shows poor function? I don't know about her exact symptoms of course, but I was just wondering. Cause it would really suck if someone had their gall bladder removed and after that still had the same pain as before.

No. 386731

I really enjoy Jaquie's dad. It's so nice to see someone with health issues who is not OTT whatsoever (even if the vlog isn't about him). Refreshing. Genuine.

No. 386734

>>386710
>>386709
She said she does not want Crohns because it's not special. Her husband has that. That's what makes him special.

No. 386735

>>386730
She has already concluded that removing her gallbladder will not improve her symptoms.

>>386716
You missed the vid where she described in detail how she keeps extra pants in the car because she has accidents.

>>386731
Jaquie's dad is awesome.

No. 386739

>>386731
>>386735
He should team up with Paul. I would watch that.

No. 386740

File: 1505426761192.png (101.58 KB, 750x871, IMG_4466.PNG)

>>386664
This person seems desperate to prove they TOTALLY DEFINITELY HAVE CHRONIC FATIGUE GUYS SEE ???

No. 386746

>>386689
Whenever anyone has questioned why she is having trouble with liquids when test show liquids are just fine she counters with she has trouble with liquids too when she is in a "flare" - which is basically an excuse for why she won't follow diet recommendations that would likely eliminate or drastically reduce her symptoms.
Its a little skeptical that her therapist would tell her to drink 10 ensures. Most medical professionals know not to make recommendations that are beyond their scope of practice. She might recommend sticking to ensures instead of the other crap but I doubt any reputable therapist would give a specific number (and I know nothing about nutrition but 10 seems pretty high). I suspect she just made up that number so that when she says she is only going to have 2 it makes it sound like she is engaging in severe ED behaviors.

She talks about having to stop a bunch of medications pre smart pill test but on the other hand rattles off that she took her heart meds, anti nausea, anti anxiety, anti dizziness meds because she is soooo sick. They will never get her to do a test clear of meds unless she is admitted.
Another note - she talks about how severe her reflux is - but she spends 90% if her time lying flat in bed. No lying flat is basic reflux precautions.

She won't need any thickening agents to help with her swallowing (megfag here - I treat swallowing disorders) - given the nature of her "illness" that wouldn't help (thickeners are meant to slow things down) - and I realize now that I have said that she will probably have some urge to start trying thickeners.

She is only sharing the parts of her appointment that she wants with IG (the parts that make her seem seriously sick and needing more tests) just like she is only telling her doctors things that will make her look super sick to them

What drives me crazy is how she talks about having severe nausea, dizziness, pain, etc… but her facial expression never changes (and she is always able to IG video it).

Pretty much the only thing I believe coming from her is the reflux - probably why her voice is terrible. Although she isn't doing much to help that either.

No. 386758

File: 1505430259078.png (191.41 KB, 750x1090, IMG_4474.PNG)

>>386570
This is from superpunkjellyfish 's "anti pedo" blog, what they call "POCD"

No. 386764

>>386746
A regular ensure is about 250 calories and a plus is about 350 calories.
I do agree about it being weird from her therapist. But an ensure (or any supplement) diet is way better than her usual diet specially since she can digest it.
Her therapist probably knows her test results (she may not. I don't know if she has given consent to allow her to get results or not and I guarantee MLS has told her the results)
And is trying to help her out, she has no reason not to drink and I'm sure she is crying how bad her ED is to therapist so it puts therapist in a weird position.
MLS is already saying she can't afford 10 ensure a day and I'm pretty sure over the next while she will not be able to afford other nutritional and medical needs..like buying a camera that doesn't work proper for her blogs instead of using the money on ensure (or much better liquid meal replacements)
I hope with this smart pill test they will be able to catch on she's doing everything she can think of to try to slow her gut down. I wouldn't be surprised if she actually stops some of them and then takes them all near trsting time.
As bad as this sounds,I hope they find some reason to have her admitted so they can keep her inpatient for repeat and new testing..her munchie-ness is just awful.
She said she was in a flair during the testing and it still came back fine for liquids.
Her issue with liquids are ED motivated. Any excuse to restrict and manipulate. Anything.
She is really working on the pots trend at the same time, (she "can't" tolerate the liquids and continues manipulating it claiming pot symptoms she is pushing so hard to get that feeding tube)
It's also strange she hasn't invested as much energy on all other tests other than "way to much acid" and some bacteria.
Remember the time she gave herself a NG for water because she refused to drink (her sp3cial ED) and she couldnt drink much by mouth And how she had ZERO issue doing that by gravity?
She wouldn't benifiet from thicker liquids but given "her weak throat" I see it being am excuse for the liquids. In her situation it won't do anything but pretty much everything else she has/does/need isn't really needed either.
They will connect the pieces eventually I just hope they do sooner than later so she doesn't end up killing herself with the unneeded meds and lifestyle choices.
She needs help.
She takes a lot of those meds together and that's why she has some issues and feel weird.
I don't believe her pain bs. If it was so bad she would have a different med. Routine.
A lot of her meds are low dose, mild medication her Drs five her to shut her up because she has borderline results that she exaggerates "too high/low and almost out of range" much like her lab results she freaked out over saying so much was almost out of range and a lot were out of range and didn't know what it meant and was worried. (She went to er and had more labs which were fine but she fixated on temples labs)
And while she acted like it was so bad the Drs wouldn't have waited for her appt. She would get a call with instruction on what to do.
Something being off by 0.1 is not anything and each lab has different ranges so it could be normal elsewhere..she acts like she's severely sick from it.

Sage for choppy ness typos phone is moody

No. 386777

>>386735

tbh, if it's true I feel her pain on having to keep an extra pair of pants. It's fucking awful to have accidents as an adult.

Sage for blogging

No. 386789

>>386398
Those are just a good example of Whale syndrome, sadly a disease that causes the attention to be an obese attention whore.

No. 386792

>>386764
She just barely had slowed emptying, which could easily be from her still taking certain medications, as well as her eating disorder. Yet she's convinced she's got the most sooper serious GP ever. Even some people with severe GP that need gj tubes (not jaquie tho of course) can drink small amounts of some liquids (just not enough to support a liquid diet)

No. 386825

>>386764
If her throat was too weak to swallow normal liquids, such as water, wouldn't she have drowned in her own saliva by now?

No. 386835

There are a lot of annoying ass munchies, but endlessvoices just makes me want to peel my face off. She just frustrates me to no end. She has 100% potential to be healthy, but she doesn't want it. She actively WANTS to be sick. She makes herself sick!! She's stuck as a kid
Janeice is my second most "ugh" munchie, but goodness gracious, when will Dani grow up and not be 14 for the rest of her life???
>>386764

No. 386838

>>386825

I doubt there is anything wrong with her oral-pharyngeal swallow function. I wonder if when she says that the muscles in her throat are weak that she really means is that her upper esophageal sphincter (top of the esophagus - supposed to remain closed/tight and relaxes when you swallow to allow food to pass through) is weak. She may have laryngopharygeal reflux instead of GERD. It would explain her voice and the reason she claims food doesn't stay down (her chronic complaints of burping up food days later). But guess what - two of the main treatments for any type of reflux are diet and lifestyle changes and we know she isn't willing to do any of those. Reflux is really her main issue but thats just too common for her.
Dani started her life as a special sick snowflake. She has turned into a boring individual (not the sharpest tool in the shed, seemingly not much going for her personality wise). She was probably considered strong and a fighter just for living past birth but after a couple of decades nobody praises you from surviving a premature birth. She has the potential to be a perfectly average individual and seems capable of having a job, making friends, having a pretty normal life. But she spends all her time lying in that one room surrounding herself with inspirational quotes and perseverating on how sick she is. Some dietary changes and a more active lifestyle would probably decrease most of her symptoms.

No. 386839

>>386825
She would definitely have a history of some complications at the very least.
She did claim to need her throat stretch a bit during an upper gi a few years ago (the sphincter) and if her acid is so bad that can irritate it too and that sphincter doesn't work proper causing the reflux.
So it's extremely shocking she has never aspirated.
I don't think She mentioned the upper gi showing throat issues, so no irritation from purging and acid and the weakness or did I miss her talking about it?

No. 386842

>>386839

All of her issues occur after the pharyngeal stage of swallowing, so aspiration is less likely. It is possible, if food/acid is coming back up to aspirate that.
However, every individual, even healthy normal individuals aspirate on occasion. If you are a healthy individual you can often cough/clear the aspirate out of your airway. Additionally, healthy individuals who aren't bed bound are much more likely to be able to handle a little aspiration without it necessarily turning into aspiration pneumonia.
I think she is trying to make it sound like she has massive issues by saying the test showed "weak throat muscles" when what was really being described is reflux. She tends to get pretty vague when she is trying to make a big deal out of something that isn't.

No. 386843

>>386792
Its insulting to people who actually have severe GP..the knowledge and treatments aren't exactly the easiest to get for thousands of people who travel around the country and the world for specialized motility treatment and she is thrilled to be using up resources, money and time.
I just can't believe the clinic didn't have the dietician and the rest of the motility team at her appt..that dietician would have been super helpful (though we know she wouldn't listen)
She needs to waste her money on ordering condensed meal supplements.

>>386835
She won't grow up. She doesn't know how to function as an adult nor does she want to do that either.
She used to work in sanitary at hospital and she was a pharm tech for a bit (actually did school for it) but with after a short period to go to ED treatment and she has never worked since.

She used to claim she had severe IBS..and I agree 100% that acid is her biggest problem and it's not a pleasant thing to live with when you aren't doing what you are supposed to do for it.
I can't decide if she is taking care of herself behind the scene and just pretend it's not doing anything or if she doesn't do anything to make herself feel so horrible for self punishment and attention and excuses

No. 386844

>>386842
Very good point

No. 386858

>>386843
All her issues are either mental or the result of her fucking with her body (restricting food, eating total crap, refusing water, etc)

No. 386860

>>386843
She's for sure an insult to people who have severe GP, but honestly jaquie is more of an insult with her precious precious tube and videos of her stuffing her face with junk

No. 386887

>>386860
>>386858

That's MLS dream anon!
It's why she is milking the tiniest of shit for years if not most her life.
She so badly wants to be a "spoonie/tubie/warrior" with the most special additives and as much as possible.

We know
She self tubes
She self medicate
She puts OTC vitamins in empty RX bottles just so it looks like a lot
She doesn't do what all her Drs say she needs to do
She doesn't listen to anyone online
She has a brace for both ankles, both wrists, 2 air cast boots, elbow sling, 2 knee braces, and a back brace, a cane
Feed formula
Kangaroo gravity bags
So2 reader
Glucose reader
Ng tube
Blood pressure cuffs
Oddly she's never mentioned a thermometer of all things lol


So she's trying to do her best to collect shit with out using a dr.
I'm sure a wheelchair is the first thing on her Christmas list. She can't afford to buy one like she has with all her collection.

She will be right up to jaquie given the chance..as well as one upping her.
I feel that MLS is also pushing for the pacer
>eye roll <

No. 386890

>>385890
If she's "hearing voices" telling her to starve herself (self-harm) then she is schizophrenic and should be locked in a padded cell.

No. 386910

>>386746
Well currently she is going on about throwing up an ensure and bile 3 hours after she drank it and says she doesn't understand since that test was normal.
It's going to get very interesting

No. 386913

>>386730

I have Crohn's. It can't be diagnosed just with blood tests. They can do blood tests to check inflammation markers (CRP/ESR), but that can indicate inflammation anywhere and isn't in any way specific to the GI tract. I haven't watched her video but I'm not sure why she'd jump straight to Crohn's, especially as if she has gallbladder issues, that can cause similar symptoms to Crohn's like diarrhea, abdomen pain, nausea, abnormal stools etc.

No. 386938

>>386890
Psychosis is not just in schizophrenia and implying anyone with psychosis needs to be locked up in a padded cell (whether Dani does or not) is insulting to those with psychosis who treat it and move on with their lives.

No. 386955

File: 1505476412205.png (922.29 KB, 682x965, Screenshot_2017-09-15-04-49-16…)

Will Sophie get her precious morphine today that she threatened to walk into traffic over when she couldn't get it last week?

No. 386964

File: 1505476825039.png (503.11 KB, 680x1015, Screenshot_2017-09-15-04-48-57…)

>>386955

The answer appears to be, "No."

No. 386968

>>386842

Normally Jacquie is just hilarious to me, but the weak throat thing keeps catching me off guard. When I had my worst flares of polymyositis, it was extremely difficult to swallow even soft food because of the weakness of the weakness of the muscles in my neck. And I mean difficult to the point where it took multiple tries to swallow mashed potatoes.

Eating any of the lumpy, hard food that she so often does would have nearly been impossible if you had any kind of disorder that substantially affected the strength in the swallowing muscles. It's not a fluctuating, day to day thing, especially if it's due to inflammation like what she seems to be gunning for.

She just keeps wanting to be the fragile little damsel in distress, always needing attention, always needing to be saved.

No. 386970

>>386910

I am always suspicious of her reports of constant vomiting. Half the time she alternates between saying that she vomits everything to she was burping up stuff for days. I could be wrong, but I suspect that the most of the vomiting she reports is either made up (because she needs that symptom to reach her end game) or self-induced (she can probably induce it just by thinking about it at this point).
And thankfully I don't have a ton of experience with vomiting but I find it suspicious that she could pinpoint the vomit to contain bile and ensure (particularly since the ensure is a liquid). She is either making it up completely or she isn't just drinking ensure and it has mixed with her mashed potatoes or whatever crap she eats (and I know nothing about GP but it doesn't seem totally crazy to still have food in your stomach a couple hours later - particularly if you are sedentary).

No. 386973

>>386970
If you've poorly chewed, had on certain things you can for sure tell what you're throwing up and in which order you've eaten is usually. Bile should be the end result after everything else and or clear fluid if you've completely emptied the stomach.

No. 386975

>>386964

Won't repost what's already been posted, but part of her coping mechanism seems to be drinking a fuckton.

With seizures? Fucking no. If you had any kind of neurological seizures, alcohol will lower the seizure threshold and fuck up your day.

No. 386993

>>386964
Wait, is she normally on morfine? I mean, didn't she get her usual rx, or does she just want morfine now? I mean, if she actually is on morfine long-term they shouldn't just cut her off. Even if there's doubt as to whether she needs it, they should help her taper off.

>>386938
I was thinking that. Friend of mine is genuinely traumatized from being in seclusion during mental hospital stays in her teens. She's doing great now, btw.

>>386913
She didn't say she had it. Just that her blood work might indicate it. They are doing further testing. But I still don't get why her doctor didn't offer her to do the -scopes without sedation, if she's so worried about that.

No. 386998

>>386993

Sophie has been on morphine for months for chronic pain which eludes diagnosis. She has admitted to using it for a mental and emotional escape and has overdosed on it at least twice. She has a history of self harm, suicidality and is diagnosed with schizophrenia.

No. 387000

>>386998
In that case, I stand corrected. That's just about the only situation where cutting a patient off is probably the safest route.

(See, I should know better to commend on people I'm not actively following.)

No. 387009

>>386998

Ok, so. NHS secret: with a few exceptions, nobody stays on morphine for long. It's used as a short term medication or in hospice settings, but anyone who needs long term analgesia is put on fentanyl or buprenorphine patches, with the oral IR formulation for breakthrough pain (Actiq lozenges or sublingual buprenorphine pills). In all likelihood,she's presented with some acute pain and got her Oramorph, and thought she's now on the sweet, sweet morphine train. GPs hate prescribing morphine because it means the patient is not on a proper pain management programme - so they tell them to go see a pain doc who can switch them to patches, and they'll happily prescribe those going forward. In all likelihood, she's refused to see a pain clinician, because they tend to see through bullshit and shunt you to psychiatry as soon as it emerges you've been abusing your pain meds. So now she's hoping to stay on the oramorph train ? with her GP. Lol no.

No. 387013

Do anyone have access to jaquies private ig @itsmejaquie?
Seems like she's posting munchie stuff on that one to, based on the bio

saged for not providing screenshot

No. 387039

>>387013
Might be interesting. As far as I can tell, it predates her other instagram and her vlogging, so it might give some insight in how it all developed. And though normally I'd say it's smart to keep certain things private, she has pretty much put her entire life out there already.

No. 387067

>>387009
There are "spoonies" on long term oramorph who have been through pain management; what you're saying is a massive generalisation. Pretty clear you're not a pain doc.

No. 387071

>>387067

It's relatively rare. I'm not a pain doc, though I do refer a lot of them and vice versa (pain docs tend to refer back to us to make sure their patients don't get opioid induced ileus). Guidelines advise against immediate release opioids in chronic pain… that some people prefer to ignore them is a different story. It also varies from trust to trust - I would seriously doubt anyone gets long term immediate release opioids here, but that may largely be because we serve a fairly rough neighborhood.

No. 387077

Jaquie has a fan base that watches pretty much every day. Why is she soooo repetitive? Not only from vlog to vlog but within individual vlogs as well? If she only published actual content that had not been repeated over and over she would have a 3-5 minute vlog. She goes nothing and has nothing to say.

Also… she's so senseless … house sits untouched for a week is going to have dust yet does she wear her precious vog mask? Nope. Because pushing IV meds will get her more attention. I have no idea how the people in her life tolerate her shit. I don't know her and her BS makes me ragey as hell.

No. 387079

*does nothing

Sage for lack of proofreading

No. 387080

>>387071
I'm good online-friends with someone in that exact situation. Not saying who (she's been mentioned here but only in passing, not as a munchie - which she isn't) because it will just get her targeted. Known her for three years and she's told me about the pain clinic she went to in DMs. This is Uk/NHS.

No. 387084

>>387071
What about the extended release tablets? I'm not in the UK, but where I live a combo of extended release for baseline and immediate release for breakthrough pain is pretty standard.

I'm not sure why fentanyl patches would be chosen over tablets, unless for patients who have trouble swallowing. Patches have their own problems. And I'd think fentanyl patches would be much more expensive than extended release morphine tablets.

No. 387085

NOTICE

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No. 387087

>>387009

Her first "pill porn" of oramorph was in January and her pain began nearly three years ago. Her doctors have been unable to make a diagnosis yet have continued to prescribe. She frequently goes to A&E when the morphine is not enough to control her pain.

No. 387090

>>387077
The repetition might be due to her autism. But you are right, she repeats a LOT. I think she is so afraid that people won't believe her that she has to repeat why she does things, why she has X device or aid and also the very fact that she has Y symptoms or Z diagnosis in every vlog. It's like she is defensive up front, explaining things that people MIGHT question about her vlogs before they get a chance to do so.

No. 387094

>>387080
>>387084

Sophie's doctors have been unable to make a diagnosis. Why should they continue to prescribe opiates/opioids?

No. 387097

>>387090
I agree about the autism but she edits the vlogs before publishing them. It's not like we watch her in real time. Would autism really prevent her from seeing the repetition in editing? Serious question I have no idea..

No. 387104

>>387097
It might make it difficult for her to remain focused on the main issue and not get sidetracked. Many auties have problems differentiating main/side issues. Or it might be a compulsive thing, where she just HAS to give the complete information about a topic every single time.

No. 387106

>>387077
kek, dust allergy do not cause rashes.. It can cause coughing, runny and itchy nose and eyes, that's it

No. 387135

>>387097
are you really underestimating autismo?

No. 387138

>>387135
I am not underestimating it, I am stating I don't have experience with it. I don't have it nor do I know anyone with it. Calm your tits

No. 387140

Totally random observation, but am I the only one who thinks Jaquie looks very different age-wise in different pics and videos? In some she could be a fifteen year old, whereas in others she looks like she's in her thirties.

No. 387142

>>387140
Yes there are times when she looks very tired, drawn and seems to have grey streaks in her hair. There are other times when she looks super young and I can't see the grey. Not sure if it's lighting or if she's dying it.

No. 387144

>>387097
>>387090

I do not for one minute believe her autism. I agree that it's probably just her being defensive.

No. 387154

>>387144
Why don't you believe the autism?

No. 387156

>>387154

She shows no real symptoms of it, everything she says is a symptom looks forced. If she has it it is so borderline that no real psych would diagnose it. She claims she doesn't understand phrases, but Judd will say something that EVERYONE knows and says regularly that even someone with autism would have explained to them and shell say she doesn't understand, when she says that Judd usually rolls his eyes. She bettemakes fantastic eye contact, with people, Harlow, the camera. I've never seen her stim, or even heard her mention it. She's never brought up breakdowns, which even someone with mild autism would have to some extent.

No. 387164

>>387106
Actually, yes it can. Most people who say they are allergic to dust are actually allergic to dust mites, which give all of the symptoms you described plus rashes/hives. Most dust contains skin cells, dirt, microbes etc which could also illicit a skin histamine response if you were allergic to the dust itself.

No. 387198

>>387156
Agreed. There's the forced "what does THAT mean?!" after things that aren't even figures of speech. She's making a caricature of the most stereotypical symptoms, including her inconsistent BS-ing of SPD.

No. 387214

>>387198

Yes! She also uses that bullshit(probably self diagnosed tbh) SPD as an excuse for her eating disorder too, claiming she can't stand the texture of some foods. Some people do legitimately have that problem, but it's way too perfect of an excuse for her.

No. 387235

File: 1505505855594.jpg (320.83 KB, 553x727, vogmask.jpg)

self-diagnosed hEDS.
She won a vogmask, because you need one when you're really sick.

In an older post she wrote that she needs the hot water bottle every day for her endo. She has her period nonstop since april. Isn't it kinda odd? She sees her gyn every month and she only takes Buscopan for her pain. And as far as I know she doesn't take any iron supplements, so why isn't she anemic? And what about removing the growth?
Her story is so odd and everyone who questions her gets blocked.

No. 387236

>>387214
"Due to my sensory processing disorder, I can't touch mangoes." GAG
"Only certain pitches of thunder bother me."
"Unless you want to see me FREAK OUT don't put avocado on my arepa" which is also filled with mayo, cheese, and all kinds of shit she manages to eat with her supposed GP.

sage for useless bitching about faking SPD

No. 387247

File: 1505507150566.png (254.83 KB, 1536x2048, IMG_3174.PNG)

Disgusting failure of the system. How have they allowed this?

No. 387248

>>387247
It's a photo of morphine.

No. 387249

>>387247

How the everloving fuck does she get morphine without a diagnosis past chronic pain? Like, with no physiological basis? She's British, they don't even have the whole "pain company gives you kickbacks for prescribing drugs".

No. 387250

>>387247

Forget the system! she got it because of the magical power of ~spoonie vibes~

No. 387256

>>387249

She's a drug seeker and the doctor should be hauled over the coals for prescribing this.

No. 387258

Hm wonder what he did/said.

No. 387259

File: 1505508929829.png (1.26 MB, 1536x2048, IMG_3175.PNG)

>>387258
Dropped pic.

No. 387264

File: 1505509484349.png (174.53 KB, 638x704, IMG_2826.PNG)

>>387259
She got an 'on call' doctor. Probably a GP from an out of hours service who doesn't have access to her complete records and therefore her drug seeking behaviour and lack of any actual diagnosis won't have stood out to them.

No. 387280

>>387247

My guess? Locum or on call doc who doesn't know her and takes everything for a fact.

No. 387281

>>387084

In general, most of the people I deal with have some degree of GI issues, so that's why I might see more fentanyl patches than oral XR formulations, but the general idea is that the diversion risk of patches is much lower.

No. 387308

>>387281
And OD risk is lower in patches compared to the XR pills, yes (unless of course you really try)?

No. 387315

>>387235
It's always so obvious who the Munchies are. Some chronically ill people put their illnesses or number of surgeries in their bio because they try to educate/advocate, but her "illness" is apparently the only interesting thing about her.

No. 387327

>>386890
>>386938
She is just referring to the ED thoughts and urges, the desire/compulsion to act on ED behaviors. Not literal voices.
A lot of ED patients and even some treatment teams refer to it as voices, it goes hand in hand with the ones who give their ED a name and refer to it as s/he.

No. 387337

>>387090
Dani is extremely repetitive too..i think it's more a strategy to keep their lies/manipulations straight.

No. 387341

>>387264
Jfc she is practically crowing about pulling one over on the poor on-call physician. That'll only work once though, and then she'll be "kicked out" of the practice because she's "too complex" or she'll "fire"
her doctors for being mean mean meanies who want to help her get better instead of giving her drugs…

No. 387343

Oral morph is not generally RX in the states..mainly in hospital settings (homes, palliative/hospice etc)
A fentyl patch would be given way before morphine would even be remotely considered.
So the fact she is getting morphine with no diagnosis of underlying cause is nearly unbelievable to me.. it just doesn't happen here. Granted there are always exceptions but not likely at all as she's not terminal with cancer or on hospice (which they have pin pointed the cause of pain at that point obviously)
She would be lucky to get T3 here with chronic pain and no diagnosis for the cause and she would likely have to dr shop to stay on T3 continuously until they find the cause and then depending on what it is may not get anything more or if it's legit she would get sent to pain specialist and likely end up on the fentyl patch and a couple T4 for breakthrough pain unless her cause of pain actually causes extreme pain at which point she would then get the heavy stuff
She makes me sick with the morphine and She should be fucking grateful she gets what she gets before she gets it completely taken away

No. 387352

>>386843
She went to treatment for her special worst her state has seen anorexia while she worked as a pharm tech. I do not know if the laid her off for it and would take her back afterwars, or if she quit or if she got fired. And that's when she started most her shit. She got on disability since she couldn't work in treatment and for a short period after discharge. She made sure to do whatever it took to remain on handouts instead of doing the treatment plan (discharge to full function independent adult) each year since she goes manic over keeping the handouts and eventually realized the only way would be to not just be a recovered anorexic but actually sick. And it worked for a while but now that they are getting to the bottom of her super severe health issues she's crying anorexia again so come time to review her disability she can stay on it and as many other hand outs possible.

No. 387356

>>387352
Finally someone else says it. Everyone always questions why she's been so quiet about the majority of her testing results from her recent week long testing spree. Because they were probably all normal and so now she's throwing herself into her 'super serious anorexia' again to keep those sweet taxpayer dollars.

No. 387359

>>387343

Morphine is usually only in hospitals here now, and only in iv form. They probably just got tired of her incessant whining. Most doctors try to stay away from long-term heavy painkiller use here, unless you have a really good reason for needing it. Why do munchies want medicine they don't need that'll just knock them out?

No. 387360

>>387140

Binging and purging will do that to you

No. 387365

…Today's J&J Show…

https://youtu.be/f9acQfsaGYU
Janiece's mother thinks her problems, including ear issues when she was 3 years old, are caused because she doesn't pray enough.

She says Paul is upset with her news, so tomorrow, they will go to Disney to turn the bad situation into a celebration. She can't walk because the pain is so bad, so she will be in her transport chair and she plans to write "Diagnosed with bad news" on the "What are you celebrating" pin.

I think writing "Getting away from my mother" on the pin would be more appropriate.

I may have new respect for Janiece.

https://youtu.be/-augsfFbMwo
Jaquie's autism seems real to me, especially today. Some have been questioning it here. She over-focuses on solving problems, like moving the furniture in her house. She has probably been asking her parents every 7 minutes about how it's going to get moved to the point of sounding ridiculously childish. She even said in yesterday's vlog she wanted to go home when she heard her power was back on, but her mother reminded her that they needed to wait a day until someone could be there for her father.

This hyper focus on solving a problem is very much an ASD trait. Someone [probably her business-minded father] found a company to meet them at the house and move the furniture. She just reports the outcome: we're getting a company to come and then waves it off as if it's not a big deal, but mentions the company multiple times because this problem has been constantly on her mind and she's proud to have a solution.

Another autistic trait she has is that she likes being asked about the details of her obsession (in J's case, her illnesses). Patreon offers her that space and encourages this behavior because people pay for it. The vlogs allow her to focus in on the details and answering questions. If she wakes up feeling well, she will present a possibility or a potential problem and detail how it will be solved. Ex: During the hurricane, she might have had a medical crisis, but every one had a contingency plan. Janiece even mentioned in a vlog about Jaquie worrying about her nebulizer if the power went out. Janiece solved that problem. Every single thing, including potential anaphylaxis, had a contingency plan.

The need for problems or potential problems to be solved seems like an ASD trait that she can't really help. This pain near her feeding tube does not have a definite solution yet, so she's obsessed with it. She could care less why it's hurting, and even says EDS may be taking her longer to heal, but she doesn't care. She wants her doctor to resolve it and has been phoning to see if the office is open.

The thing bugging me today is that she's feeling "blessed" to have a house that was not damaged and doesn't understand why others "aren't blessed" and lost their homes (perhaps she spent too much time with Janiece's mother who probably believes people didn't pray hard enough? Grrrr.). Blessings aren't binary.

No. 387366

>>387365
I don't want to believe anything that comes out of Jaquie's mouth, really. Despite what she tells the camera, her interpersonal relationships appear just fine and she's able to communicate clearly on a wide number of levels (body language, tone expression, verbal language) which is what jumps out at me. Her personality might lean towards obsessing over problems, but I don't think that's proof. Lots of people are very problem-focused and want to "fix" everything right away. Socially, emotionally, and communicatively, Jaquie's plain average. She wants to get munchie points any way she can, any diagnosis at all.

No. 387367

>>387365
I don't think She is autistic. At the most she may be a high functioning aspie..i come from a family with multiple high functioning aspie and 1 autistic member..i do agree she shows signs and has her moments that make me question myself about this but I really don't think She is.
I think most of it is just borderline personality disorder with cluster B traits and OCD/anxiety disorder..and possible high functioning aspie..mixed with certain medications..but most examples you listed are also traits for BPD/cluster B/ocd/anxiety.
She is babied and not independent and she has become dependent on others and can't grow up and won't grow up and when things get rocky or don't go to plan she shows that BPD/OCD a lot mixed with being a munchie..this is just my opinion though. I'm not a dr or a friend just an observer..the poor girl is a fucking mess regardless what the true issue is

No. 387386

>>387259
This is a video. She is mouthing "I've got morphine! YESSSS!"

Would someone who needs morphine for pain be able to make 100 ml at 5 ml dose last a month as she claims? Or, has she mentioned taking other meds in between?

I don't know how pain/morphine/pain meds work.

No. 387398

>>387367
you can't have "BPD with cluster B traits". BPD is a cluster B

and many of the symptoms of BPD can be attributed to a highly anxious individual – you don't necessarily have to have both and it's hard enough for mental health professionals to distinguish in person let alone over blogs and what people decide to reveal about themselves over the internet.

(not WKing Jac because I despise her, but explaining the facts)

sage for psychfagging

No. 387402

>>387386
If she was in bad pain, no, it would not last a month. 100ml at 5ml each dose would last 20 doses. Even once a day would not last a month, which means that she is not taking it daily. Someone with severe chronic pain (like she claims), needs either multiple doses per day, or a round-the-clock pain management (implant, XR, patches). Oramorph, like any morphine derivative, has a pretty short half life, which means she's maybe getting 2-3 hours of relief each dose (correct me if I'm wrong pharmfags). So, 40-60 hours out of 720 hours in a month is all the relief she's getting (over 600+ hours in pain), which is NOWHERE what a severe chronic pain patient could manage without having extreme functionality issues and symptoms like high blood pressure, etc from pain.

No. 387408

It seems she is likely using it for the high and using chronic pain to cover it up..shr must have something inbetwwen if she is in so much pain..but It really seems she's taking larger doses.
Her current story is one big reason I think that..shes high

No. 387416

I don't believe for one second Jacquie has autism. Maybe she has HPD. She seems pretty histrionic. I can definitely believe she has an anxiety disorder, but she also just seems to be a stuck up, spoiled woman who is trying desperately to remain in the care of others, mostly because she's attention hungry. I feel bad for her almost. But also fuck her

No. 387419

File: 1505530801131.png (97.88 KB, 679x303, Screenshot_2017-09-15-19-51-46…)

>>387259
>>387264
>>387402

Her script instructs 5ml, but in the comments of the video she says 10ml.

>>387341

One of her GPs did kick her out and she fired the last one. She saw a new GP on Thursday but didn't get her morphine then because the GP had not received her records yet.

No. 387425

said something on my blog about how hEDS is overdiagnosed (mainly because of self dx and docs handing it out like it's candy), and someone jumped down my throat about how valid self dx is and how they hopped from doctor to doctor for 4 years for docs to believe ANYTHING was wrong with them. omg. what has the fucking internet done?!

No. 387438

>>387425

thanks to the EDS society there are droves of people with any degree of hypermobility that feel they are entitled to a sweet sweet EDS diagnosis

No. 387439

>>387419
I'm pretty sure she's been kicked out of HP surgeries more than once. I'd have to double check though.

No. 387444

Ugh seeing twistedchronic's video of her being so tucking happy about getting oral morphine confirms that she is a drug seeker. Normal,people don't do that.

No. 387445

>>387402

Correct. Oramorph is entirely useless for chronic pain treatment and worse than useless for treating long term pain conditions. It is at best a decent enough breakthrough medication, but usually breakthrough meds tend to be equivalent to 4 hours of normal release meds - so that would be for 10mg morphine, a 2.5mg hourly rate. That would mean she'd be on the equivalent of a 25mcg fentanyl patch, which is the second to lowest dosage.

No. 387446

File: 1505535931182.png (243.78 KB, 1536x2048, IMG_3176.PNG)

>>387439
Yep. FOUR times.

No. 387447

>>387444

Yup. Normal people quietly accept they need a nasty, nasty drug to survive. When I had to first take morphine to manage my pain issues, I nearly lost my licence to practice, couldn't drive for weeks and was in a constant haze. Unless you're a druggie with no responsibilities at all in life, morphine is bad news.

No. 387448

>>387446

Because you're a drug seeking shithead and people don't fancy risking their licenses so that they can get you that sweet, sweet oramorph.

No. 387452

>>387446
If you've been kicked out of four doctors' practices, maybe it's time to admit that you're the problem

No. 387458

File: 1505538293353.png (731.25 KB, 640x1136, IMG_4014.PNG)

Bekah Georgy
Tubie ana gastroparis queen who has lived in a nursing home for years.

No. 387461

>>387458
I'm pretty much sure she doesn't have GP or pots or eds like she claims. She's just a munchie with anorexia who doesn't run her tube feeds at all and purges through her tube. She's in a nursing home because she's been kicked out of pretty much every ed treatment center in the us

No. 387463

>>387445
lmao this is such bullshit. Pain consultants prescribe it as part of complex multi-med programmes for managing chronic pain. You really don't know what you're talking about.

No. 387464

>>387439
>>387446
What's HP surgery?
And how the hell Did she get kicked out of FOUR surgeries?!

No. 387471

>>387463

Yep, for breakthrough pain. I've never seen a single instance of oramorph for chronic pain monotherapy with the exception of some palliative care settings.

Again, YMMV. Arguably I encounter less oramorph in the first place because most of my clientele has digestive issues and is on patches.

No. 387473

>>387464

GP surgeries. They probably "kicked her out" (ie. discontinued her patient status) because they could find nothing wrong with her physiologically or for non-compliance.

No. 387474

>>387471

She is taking nothing else for pain, if her pill porn is accurate. Her chronic warrior status began when she collapsed at work with right abdominal pain. She underwent an appendectomy but her abdominal pain persisted. Soon after she developed joint pain in her "hypermobile double joints" and unexplained non-epileptic seizures.

No. 387475

>>387458
How many people told her she spelled fueled wrong?

No. 387476

>>387356

all her work stirring up the ED bucket is already going against her.

No. 387477

>>387473
When she saw the GP earlier in the week they must have been suspicious; they could have prescribed a very small quantity of Morphine until they got her records; especially as she's prescribed 5ml as required.

The fact they didn't and said it was because they 'don't have her records'; I'm sure it's because they realise she's drug seeking and there's really nothing wrong with her.

I wonder what she told the out of hours service to get 300ml? Stupidly, a record of this consultation will go back to her new GP eventually who will see that they refused to prescribe Morphine so she went somewhere else to get her fix, thus confirming their suspicions she's a junkie. They will be even less likely to prescribe it now.

Also, like everyone else has stated what an odd medication regime to be on. If she's having multiple problems with her joints then physiotherapist my and weight loss ought to be tried first.

No. 387478

>>387476
Especially when there are a lot of ed patients with worse GP than hers that have it resolve after they stopped starving themselves and binging and purging

No. 387479

>>387477
She will probably use all that up in a week or two.

No. 387500

>>387478
Exactly!
I know it is not uncommon for Drs to refuse to do any motility testing on someone who is actively engaged with ED because they already know it will most likely be slow. Duh..ypur stomach is a muscle and like all muscle of it isn't used it grows weak and will go away once they start to use their stomach more. It does give a lot of symptoms to some and some truly need the help of an NJ briefly (a liquid diet is also done briefly instead of a special tube) in treatment possibly on motility and nausea meds to help initially so they don't get worse in treatment and help alleviate symptoms that would discourage anyone from eating much.
But again, it's brief and they tend to ween you from feeds and oral to all oral as quickly as possible.
That's almost always inpatient in referring programs. If you are not bad enough to have to go to a referring program before treatment facility you are far less likely to have any motility issues and if you do it's like MLS, mild and completely manageable with diet and proper nourishment and maybe meds temporarily.
If she would stop fucking herself up she would have a normal GES

No. 387527

File: 1505557234823.png (692.95 KB, 682x982, Screenshot_2017-09-16-03-04-43…)

High confirmed.

No. 387540

>>387527
Brain fog sounds so much better than 'I am higher than a kite'.

No. 387544

Okay, maybe i'm just too suspicious here, but do anyone know maggie claydon?
She's a vegan lifestyle and travel blogger, which have also struggled with anorexia, selfharm and suicidal behaviour

She claim to have been Quadriplegic but now travel around the world. She makes posts about how she's fighting death everyday
She have Charcot-Marie-Tooth sygdom which isn't even fatal

I don't think she's a munchie but a bit OTT

https://www.instagram.com/maggieclaydon/?hl=da

No. 387547

>>387527
Oh wow, this cow lives right by me. We might have been to the same hospitals as there's only a couple decent ones that actually have ED departments. It makes her access to oramorph way more surprising - hospitals around here are more likely to give you two paracetamol and an ice pack rather than oramorph. They're reticent to even hand out cocodamol, and nurses and doctors are well-trained on spotting drug users because heroin and crack are a huge problem in some of the surrounding boroughs.

No. 387548

>>387547
Actually she might not be as near to me as I though, I just went on her IG and saw she posted her bottle of oramorph. The label says she got it in Southampton, at the Lloyds Pharmacy on Portsmouth road directly opposite The Old Fire Station surgery.

So either she lives in the city of Southampton and went to that little doctors surgery, made an emergency appointment and begged for the morphine. Then she's taking a roadtrip down to Dorset today. Or she lives in Dorset and the tank museum is local to her, meaning she went a really long way to go to a GP surgery.

No. 387554

>>387544
As you said, not a munchie. Scrolled through her instagram, looks like an actual lifestyle blogger. Food, her in dress, her doing yoga, etc.

But recovered quad?? That's strange as heck. Reminds me of that paralympian handcyclist who claimed her SCI reversed itself after a bike accident. Turned out she had conversion disorder (or maybe factitious disorder, there's really no way to know). Still great she was able to walk again after years in a wheelchair of course, but an entirely different story and not the miracle they claimed it to be.

No. 387562

>>387554

Not a neurologist, but as far as I'm aware, CMT 'quadriplegia' is very different from SCI quadriplegia, in that the former is reversible. She did not recover from a Cn SCI, which would have been really unusual. People with CMT sometimes spontaneously improve or recover.

No. 387568

>>387562
Ah, you're right. I though they meant she claimed to be a former quad (as in: SCI) and NOW had CMT. I don't think of someone with myopathy as a quadriplegic.

Still, I thought CMT was progressive?

No. 387578

>>387477
This is so bizarre. In the US, there are monitoring systems that prevent going from doctor to doctor to get opioids. Even if doctors don't have records, they can check a database regarding narcotics, and I'm pretty sure pharmacies will raise a red flag when a person comes in with narcotic rx's from different physicians. Not to mention patients on a long term pain management plan usually have to sign something saying that's they will only accept narcotic rx's from their one doctor / the er in an emergency.

No. 387584

>>387527
>my brain fog made me forget the tickets
yes. No healthy person has ever forgotten a ticket before, it has to be pathological.

No. 387586

>>387578

Pain contracts don't exist in the U.K., I think for legal reasons. As for a national level registry of opioid prescriptions: doesn't really happen because there is no real national interchange between EMRs. For instance, looking at my EMR, I can only see what the patient was prescribed by other clinics in our hospital, but not what e.g. their GP has prescribed, because the EMRs don't interface.

No. 387587

>>387568

CMT is a hereditary neuropathy, not a myopathy. They might well exaggerate CMT affecting all four limbs to 'quadriplegia'.

No. 387590

>>387586
Both places have major misuse of the system and meds anyway so I guess nothing will work to stop pill seekers, doctor hoppers, and munchies kek

No. 387593

>>387445
kek. 25mcg/hr Fent would mean Sophie would be treated for pain slightly more "severe" than what Shelbi's doctors are treating her for (12.5mcg/hr). Shelbi's pain is "severe", too. all of these munchies scream severe pain and they're given such low doses of narcotics and say they work so well! I'm calling bullshit on their severity of pain if 1-2mg per hour of morphine (or equiv) is making them feel wayyy better like they claim.

No. 387603

>>387593

lol I've been on the 75mcg patch since age 16 and have never described my pain as 'severe'. I find these people ridiculous. And the 12mcg patch is a joke - I've had patients who simply stopped using it and did not even experience withdrawal.

Why do these morons think being in 'severe' pain is something to aspire to? I've seen it up close, and it does horrible things to otherwise good people. And they're going to be taken less seriously thanks to people claiming 12/10 severe pain while laughing and chatting and Instagramming. Gah.

No. 387604

>>387568

Also, most SCI quads and paras tend to mention level and completeness, e.g. C4 complete rather than merely saying 'quadriplegic'. The differences are significant.

No. 387608

File: 1505571742835.png (2.32 MB, 1536x2048, IMG_3177.PNG)

Such a drama llama.

No. 387609

File: 1505571774660.png (3.91 MB, 1536x2048, IMG_3178.PNG)

Doesn't look like a liquid diet to me.

No. 387611

>>387554
I know we already established she has CMT probably. But people with SCI's can recover depending on where there injury is and if the injury is incomplete or not, within the first year of injury. I've seen it happen before. Like if their injury is very low on the spine T12, or L5 (incomplete) I've seen them be able to gain muscle movement back much easier within the first 6-12 months and sometimes walk again.. about 1 in 8 probably will give er take. However people with neck injuries too (incomplete again), are able to gain muscle movement and feeling back as well. Although it's more likely in their arms it CAN be in their legs sometimes. It's more likely but I've seen it and I've seen them learn to walk again. If the injury is lower on the spine of course, not super close to the brainstem.
Sage for medfagging I'm a PT (;

No. 387612

>>387611
Their* I did correct this and it went back sorry English is not my first language

No. 387614

>>387608

Recent instagram video has her claiming a lack of nutrients induced migraine - with no look of discomfort on her face and very loud music playing in the background - I am fortunate enough to have never experienced a migraine but am I wrong in believing that if it truly was a migraine that loud music would be intolerable - much less videoing (also she is laying down flat which is great for her reflux)

No. 387624

>>387614
I don't know how others experience migraines.. but if I have one.. I have to lay in the complete darkness with a cold towel over my eyes and head and wait until it's over because it's so excruciating. I can not hear sounds, stand up because I'm dizzy, and I definitely can't look at any damn lights that's probably the worst thing for migraines in my situation. Sage for blogging but I hope that helps to give you an idea of how she's probably fucking LYING lol

No. 387625

>>387603
On 20mcg/hr BuTRANS – 25-110x more potent than oral morphine – and still don't consider my chronic pain severe most days (while off the meds and not counting acute pain kek), so I really don't get why these munchies are crying "severe pain"…
<sorry for semi-blogging, trying to make a point)>

I know pain is subjective, but you're right. I don't understand the people who are on low dose narcotics claiming 12/10 severe pain when most doctors recognize 10 as "worst pain you've felt in your life"/unconscious (i.e. numbers above 10 don't fucking exist).

Like someone on one of the threads has said, people who experience 10/10 CHRONIC pain would probably be unconscious or have major effects of high blood pressure, other bodily effects of pain, and perhaps would kill themselves if they were conscious. Most people never even reach 10 acutely in their lifetimes let alone chronically. Someone who has pain that makes them feel like they would vomit is still like an 8/10. Those who are actually in severe pain are not being taken seriously because of munchies and drug seekers.

No. 387628

File: 1505573723703.png (256.15 KB, 749x931, IMG_1904.PNG)

I dunno… what do you guys think? Don't you think a churro and a pizza would be really good for her "non-functioning gallbladder, possible chrohns, and grastritis"??? Let me know what you think.

No. 387630

>>387611
O, I know they can. With, as you wrote, INcomplete SCI. But those people will specify their injury as incomplete, and generally don't identify as quad/para. Not if their recovery was near-complete, that is.

>>387587
Did not know that. In my first language, there is an umbrella term that encompasses both myo- and neuropathy and roughly translates as myopathy. My mistake.

But my question remains the same: CMT is progressive, right? I know there are different types and I know PT and other treatment can help some patients. But I still don't see someone with weakness in both lower and upper limbs so severe they are practically paralyzed having a near complete remission. CMT weakness develops more periphally at first: feet, lower legs etc. Weakness in upper arms and legs is less common. So for it to develop to quadriplegia would mean a patient is severely affected. I'm not a medfag, but unless I'm very mistaken, there's something going on there.

No. 387632

>>387630
Correct. CMT is progressive with symptoms presenting later in life usually/worsening. However there's 3 types of CMT and differences between axonal and Demyelinating. So of course if the person has the Demyelinating it's worse for them. So I'm not sure what type this person would've had to end up a quad, I'm assuming Demyelinating. All types of CMT I've seen usually affect the hands and "cripple" them and distort them usually.

No. 387637

>>387609
That's hardly even soup.

>>387628
What's it anyway with these spoonies/vloggers having such severe GI problems and eating crap? The thing that boggles me the most is that they CHOOSE to show/tell the world all the fastfood and other crap they are eating. If somehow I would want to convince the world of the severity of a GI condition, I'd probably not want to show the world if I was eating crap. I mean, I get that if you're on a diet you may sometimes ignore guidelines b/c you just want to taste a bit of your favorite snack. I do. But that's a) a long way from ignoring guidelines ALL the time and b) I probably wouldn't advertise that to the whole world. I'm not on social media though; is there some rule that you cannot follow dietary guidelines for GI conditions if you're posting on instagram/vlogging on YouTube or whatever social media outlet is popular nowadays?

No. 387638

>>387628
Um no. Anything with a high fat content with even an inflamed gallbladder (or pancreas) let alone an ill-function one is a bad idea. Can't speak for Crohns but I'm guessing that's not ideal to eat those with that either.

No. 387639

>>387625

This is what I have a hard time believing so many of these chronic pain munchies/spoonies. It's like they've never encountered acute pain before, which is probably true– sedentary young women living in middle/upper-middle class backgrounds will have likely never done so much as slammed their finger in a drawer.

So it's like they have no framework for what is actually painful. Having aching muscles/joints/stomach is its own bag, but when it's more painful than a traumatic injury you know it's not just your average stomach ache/twisted ankle/muscle pull.

But it's like all of these weirdos pathologize normal aches and pains. It's like their perspective is broken.

I vote we should put them in some kind of experiential camp where they have the opportunity to be exposed to something more painful than a cramp from sitting too long in one spot.

No. 387642

>>387628

When I had my gallbladder removed I was told I could no longer eat meat other than chicken and fish, and I should avoid anything fatty. If I didn't I would have pain just like I did before it was removed. She's going to have the surgery, which by the way is the easiest surgery ever, and then all complain about the pain.

Sage for blogging

No. 387643

LOCKING IMMINENT

Thread has exceeded 1200 posts and is about to be locked! Please create a new thread and post a link to it.

No. 387645

>>387554
Yeah, she seem's like a normal blogger on IG. Check out her youtube tho, she made two videos about how she beats death everyday or something.. seems quite OTT

No. 387650

Can anyone who is familiar with creating a new thread / off mobile make one? This is about to get locked.

No. 387659

>>387637
For most it's an attention thing mixed with just being stupid thinking internet would never pick up on that..a lot have personal accounts that friends and family follow that show different crap and only occasionally make munchie and bs posts but not everything because then the people not on the internet will also catch on.
Sadly not all munchies are smart enough to do that specially if it's "traditional" munchie and not just MBI..i guess like jonze (sp?)
Does anyone have an update on her?

No. 387660

New thread >>>/snow/387658

No. 960119

I came across a YouTube channel called "being dusty mae"
Mom is a FULL MUNCHIE in fact a university in America uses a clip from her channel to educate his class on munchies…she contradict herself SO MUCH ..watch a few you'll see the psychosis..she deletes all neg or questions on her channel constantly deletes clips and disables comments..says daughter can't walk..clip of her walking..says daughter is strictly npo..munchies on snacks at library..mom blocked me and deleted my questions regarding her constant lies…its fucki g gross and sad



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