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No. 379077
Over-The-Top Spoonies/Munchausen By Internet Attention Whores General #9
Previous Thread:
>>>/snow/372040Discuss 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=15337239https://www.abc.net.au/news/health/munchausen-by-internet-what-drives-people-to-fake-an-illness/7631990https://www.theguardian.com/society/2015/apr/29/jules-gibson-munchausen-by-internet-sickness-bloggers-fake-it-whole-pantryhttps://en.wikipedia.org/wiki/Munchausen_by_Internet#Characteristics No. 379193
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Speaking of Jonzie….
No. 379213
>>379206It'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
>>379193I 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. 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
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"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. 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?
>>379342She 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
>>379347Nice "hobbies".
What does she mean with packages for children?
No. 379350
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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
>>379349She 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. 379364
>>379362The obsession with ill children makes me really uncomfortable.
It's obvious that they don't want to grow up.
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. 379411
>>379362The 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
>>379364I 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
>>379411Germans 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. 379467
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She's going to get it even if Daddy has to pay out of pocket for it.
No. 379470
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time to see another doctor because the old one wont agree with her.
No. 379473
>>379077>>379467She 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. 379492
>>379387What 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.
>>379411Does Germany have any procedures to weed out nerve pain munchies?
No. 379493
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This popped up as a 'new to Instagram' account on my feed today. Anyone got access to it?
No. 379496
>>379467Her 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. 379501
File: 1503682212367.png (296.28 KB, 1536x2048, IMG_3060.PNG)
Carmel is magically getting better.
Pic 1/2
No. 379508
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her POTS is sooper bad guys but she was doing flips the other day kek
No. 379511
>>379500yea that takes any doctor cred and throws it right out the window lol
>>379501your 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
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>>379493Looks 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. 379553
>>379520she 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
>>379548She 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
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Ok Jacquie
No. 379557
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I really want to know who is taking these pictures
No. 379558
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No. 379566
>>379492They 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
>>379560Because 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. 379602
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>>379592i 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. 379624
>>379604Mild 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. 379630
>>379613neat. if you plan on staying here newfag, read up on the rules first. sage your ot.
>>379592raeding 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. 379648
>>379630
> colons removedThat'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.
> arthritisAnon'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 liveWith 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 spineThe fuck is one of those? Kyphoscoliosis?
> thyroid problems, nonspecificSee Anon's Law, above.
No. 379651
>>379630Not 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
>>379640The 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
>>379467Just 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. 379675
>>379664I 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
>>379664Sorry, 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. 379685
>>379607Same. I'm not on IG enough to really follow some of the other clusterfucks.
sage for samefagging
No. 379760
>>379511Bone 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. 379786
>>379780Spoonies 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. 379794
File: 1503708800119.jpg (10.98 KB, 275x263, 1439711710721.jpg)
>>379790lol 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. 379826
>>379824Didn'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
>>379825Some 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. 379833
>>379823Ugh! 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.
>>379826It 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. 379848
>>379835>>379840If 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. 379857
>>379848There'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. 379865
>>379858I 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
>>379857Agreed. 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
>>379865I 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. 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. 379881
File: 1503716407354.jpg (166.3 KB, 750x1334, IMG_5173.JPG)
No. 379915
>>379503The new rug is really going to help that falling thing.
She even said something about a tripping hazard as Judd put it down!
No. 379933
>>379927That'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. 379948
File: 1503722977432.jpg (128.02 KB, 500x337, IMG_2187.JPG)
>>379945Mail after Jaquie's gotten ahold of it. Now I understand why she gets bloated etc…
No. 379949
>>379933First off, am I replying correctly and using sage appropriately? I can never tell
What are you referring to on a raid about Jacquie?
No. 379956
>>379411I 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. 379978
>>379859wait 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. 380040
File: 1503740316117.jpg (28.31 KB, 324x226, IMG_0898.JPG)
>>380023You're not nearly as cured of your spoonie-ism if you're coming here posting praise/attention seeking shit like this.
No. 380051
File: 1503744569701.png (289.25 KB, 1536x2048, IMG_3070.PNG)
Buy your own bed like the rest of the world….? Nope.
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. 380070
File: 1503750117609.png (620.73 KB, 720x1280, Screenshot_2017-08-26-14-19-12…)
>>380059I'd pop all the opiods too, if I had that face with 32.
No. 380072
>>380065She'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.
>>380066From 8/14(or 14.8) 350 mg Lyrica, Methadon, Fentanyl, Targin, Ketamin, Clonidin, Lorazepam and CBD oil. What a weird medication mix
No. 380079
File: 1503751876630.png (141.9 KB, 750x1068, IMG_4216.PNG)
As soon as they move to discharge her she "stops breathing"
No. 380105
>>380064That 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. 380122
>>380061This concept is
problematic as it privileges racism to white people and dehumanizes people of color.
No. 380133
>>380065350mg 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
>>380098Who the fuck is Janice?
Sage for being dumb.
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. 380148
>>379897High 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
>>379949What raid?
Sage for stupidity
No. 380150
>>380109WHO ARE YOU?
Sage
No. 380157
>>380133There 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. 380164
>>380051man 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
>>380079true 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
>>380133In 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)
>>379624Accepts 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. 380296
File: 1503773947504.png (756.6 KB, 750x1334, IMG_5179.PNG)
"Extreme fall risk" yet walks around unassisted and without shoes
No. 380301
>>379760What 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
>>380188I 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
>>380296kek 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. 380331
File: 1503776008170.png (256.31 KB, 750x939, IMG_2201.PNG)
>>380060Okay 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)
>>380331She'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)
>>380302Painlevel 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
>>380319Yes, 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. 380367
>>380364see
>>380313Read the fucking thread before you post please.
No. 380372
>>380319Definitely. 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. 380434
>>380296Where'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
>>380434surely 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>>380372Thanks 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. 380480
>>380043Because nobody gives a shit, it's got nothing to do with anything, and it's blatant 'look at me being important and special'
>>380079The 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. 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. 380510
>>380479its 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>>380503the 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. 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. 380549
>>380472SMAS 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. 380557
>>379933>>380149Still 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. 380608
>>380574Not 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
>>380507The 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)
>>380344Ok I've got some more. This time she was obvs not on contact precautions lol
No. 380629
File: 1503813711755.png (226.91 KB, 750x1102, IMG_2194.PNG)
>>380344This all speaks for itself
No. 380630
>>380608UGH! 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)
>>380344Then 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)
>>380344Last 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. 380639
File: 1503814941456.png (221.33 KB, 750x1140, IMG_2205.PNG)
>>380636Why always so vague????
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)
>>380644Where 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. 380653
File: 1503816481226.png (355.02 KB, 750x1141, IMG_2208.PNG)
>>380644Just 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
>>380644Well, 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. 380667
File: 1503818271170.png (81.82 KB, 640x419, IMG_2545.PNG)
>>380656I guess her GI problems have improved!
No. 380735
>>380510What's peace of life?
Saged for idiocy
No. 380769
>>380763Not 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
>>380735Basically 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
>>380659What 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. 380789
>>380778Yesss. "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. 380876
>>380796Julian, 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. 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
>>380882those are totally bodychecks… she appeared in an earlier thread with farmers calling her out for exactly that
>>380884ffs 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. 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
>>380897This 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)
>>380892Must 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. 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. 380946
File: 1503855779761.png (185.73 KB, 746x1107, IMG_2229.PNG)
Boob-port-girl is now also a college girl lol
No. 380951
>>380917Canadian anon is charging phone to continue bringing us milk, high five.
Sage for little details
No. 380966
>>380662Her boobs probably cause her a lot of chronic back pain. They look so heavy.
Sage because the hearts made me look
No. 380990
File: 1503859139412.png (110.1 KB, 640x1056, IMG_5157.PNG)
>>380980Kek well in the mpa and pt era red represented "Ana" and blue represented "Mia"
No. 381170
File: 1503879086044.png (176.41 KB, 750x850, IMG_5192.PNG)
Still pushing hard for that bloody picc
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. 381411
>>381392Found 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. 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. 381488
>>379077>>381470This 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
>>381488That'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. 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. 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. 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
>>381706Yeaaaah 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. 381774
File: 1503947184183.png (270.36 KB, 747x1217, IMG_2259.PNG)
Super faithful to being chronic lol
No. 381831
>>381757I 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. 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. 382013
>>382004Is 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. 382033
File: 1503966182694.jpg (268.94 KB, 1046x580, Screenshot_20170828-191938.jpg)
I smell Jaquie's BFF fishing for a gastroparesis diagnosis.
No. 382038
File: 1503966491382.png (212.54 KB, 750x1111, IMG_5210.PNG)
No. 382045
>>382006One 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. 382051
>>382045What'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. 382105
>>382053SPCs 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. 382139
>>382051It'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
>>380302there 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
>>380638I'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. 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. 382214
File: 1503983195472.png (208.94 KB, 750x1101, IMG_2267.PNG)
This was too milky not to share. She diagnoses herself LOL
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. 382223
File: 1503983632666.png (191.13 KB, 750x1087, IMG_2269.PNG)
>>382206Haha probably needed for this. Can't breathe the chalk fumes guize.
No. 382257
>>382231I 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. 382273
>>382257Ah, 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. 382295
>>382272working on it :)
Her account is still locked
No. 382307
File: 1503994022314.png (243.82 KB, 1536x2048, IMG_3085.PNG)
Lo and behold, she ends up with a gastroparesis diagnosis.
No. 382315
>>382105OR 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. 382335
File: 1503997221810.jpg (485.23 KB, 726x940, seriously Kopie.jpg)
>>382272not 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. 382361
>>382211Are you retarded
The higher calorie formulas are harder to absorb
No. 382367
>>382307Oh 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. 382380
>>381411hahaha 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
>>382213no 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. 382451
>>382299I 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. 382486
>>382472If 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. 382507
>>380810Sorry 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
>>382507It'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
>>381411I 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!
>>382217I 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
>>382507I 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. 382587
>>382486Side 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. 382617
>>382598I 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. 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)
>>382754Another productive day at other people's expense. I'm so glad to know my taxes are well spent!
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
>>382754What'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
>>382764Feeding 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
>>382733Day 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
>>382774Probably 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".
>>382764Why 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
>>382801My 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>>382723I 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. 382855
>>382834I 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. 382926
>>382876Jonzie 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. 382945
File: 1504065308850.jpg (123.3 KB, 600x600, IMG_2281.JPG)
Hates change but changes every specialist??
No. 383055
>>383033My 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. 383081
>>383070I 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. 383089
>>383085If you can stand it, Janiece's colonoscopy "fail" video:
https://www.youtube.com/watch?v=O_NKfutmCnAThen the recent need-a-wheelchair video:
https://www.youtube.com/watch?v=FlZKAFrh8eA No. 383109
>>383089Oh 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. 383115
File: 1504102442924.png (27.9 KB, 750x176, IMG_1523.PNG)
it's like they plan for this shit
No. 383151
>>383147Yeah 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. 383198
File: 1504109852548.png (215.89 KB, 750x1127, IMG_2283.PNG)
The creepy twins both got food poisoning…. deliberate?
No. 383212
>>383208I 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. 383219
>>383208God, 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.
>>383213Well, 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. 383342
>>383199I'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
>>383340I 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. 383397
>>383386She'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. 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. 383431
>>383416Tbf custom wheelchairs are much comfier and easier to use than ordinary ones.
You should try it. The cute colors are just a bonus.
No. 383451
>>383438Understand, 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. 383470
>>383468Ehhh. 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
>>383369The 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. 383540
>>382451Exactly. 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. 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
>>383426Buttons (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
>>383547EDS
AND Marfan's?! Damn, this girl has "won" the genetic lottery. Is this even possible? Like… one in a trillion?
No. 383569
>>383194hi veds girl
you might wanna avoid posting an anonymous post here that is ridiculously close to a post you made on Insta ?
(?) No. 383626
>>383147That 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. 383641
>>383635Wow. I'm watching her most recent video
https://www.youtube.com/watch?v=lOe-MgQroB8Had 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. 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
>>383626I 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. 383705
>>383684So 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
>>383705I'll give you the link.
https://www.youtube.com/watch?v=O_NKfutmCnASaged, 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
>>383481This 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. 383712
>>383651Those 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. 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. 383738
>>383737Jacquie: "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. 383748
File: 1504192846575.jpg (Spoiler Image,59.18 KB, 580x580, IMG_0665.JPG)
>>383738Guise my toobz is too small now lols. Gots to get me a new one.
No. 383768
>>383742In 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. 383782
>>383728I 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. 383786
>>383503I 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. 383809
File: 1504198907575.png (101.26 KB, 1208x711, jaq.PNG)
>>383808It'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)
>>383809And another one. Not sure if the one above is still there; I didn't see it.
No. 383825
>>383705I'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. 383835
>>383831If 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.
>>383825Last sentence: yeah, that's what I thought. Thanks for confirming it though.
No. 383836
>>383781Again 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. 383842
>>383836Well 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
>>383814So 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
>>383835Mids 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
>>383842We 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
>>383831Speaking 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. 383909
File: 1504209164208.jpg (108.2 KB, 1388x428, hd6qg2r.jpg)
>>383851Where 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.
>>383873Does 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. 383928
>>383924I 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
>>383909Well, 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/jL7uxN2GvP4In 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. 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. 384014
>>383982Oh 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. 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. 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. 384171
>>384165Not 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
>>384171The 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. 384188
>>384181uneven 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. 384240
File: 1505007288940.jpg (283.09 KB, 1079x1458, Screenshot_20170910-023043.jpg)
Living legend?!
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
>>384383Jfc 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. 384420
>>384401Thought 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. 384638
File: 1505077682134.jpg (763.57 KB, 1031x1683, Screenshot_20170910-160641.jpg)
Pretty sure this bitch just wants to be Jaquie.
No. 384658
File: 1505079441531.png (956.73 KB, 1080x1701, Screenshot_20170910-223439_01.…)
Guess who is in hospital again…
No. 384732
>>384719>>384729tbh 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. 384773
>>384760Just 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. 384784
>>384658Nnnnnnope. 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. 384807
>>384658Her 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. 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. 384959
>>384795who 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. 384972
>>384959Yep, 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. 384995
File: 1505147764500.png (455.96 KB, 679x1030, Screenshot_2017-09-11-09-32-40…)
No. 385070
>>385046Because 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. 385101
>>385096This.
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. 385125
>>385116Not 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. 385131
>>384975You 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. 385155
>>385132Ugh. 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. 385162
>>385155>>385132Is 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
>>385162I 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. 385355
>>385344She 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
>>385355The 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
>>385171CPL 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. 385386
File: 1505194787936.png (593.33 KB, 687x1043, Screenshot_2017-09-11-22-33-06…)
>>385046>>385070It's part of her "seizure nest" to keep her calm as she comes out of a seizure. No mention of her precious nebuliser though.
>>385111Sophie 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. 385404
>>385397She'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)
>>385355Just 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. 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. 385463
>>385386Ugh 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.
>>385452Epilepsy 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
>>385461I 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. 385470
>>385465Please don't forget to post a selfie with your EMT during the ambulance ride.
Sage for adding to sarcastic sage rant.
No. 385556
>>385465I 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. 385599
>>385516Don'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.comAnd 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
>>385630Funny 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>>385630And 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. 385686
File: 1505254328261.png (310.45 KB, 1080x1707, Screenshot_20170912-230340_01.…)
>>385132HMG 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. 385690
>>385638What 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. 385703
File: 1505255105735.jpg (75.04 KB, 540x462, IMG_0295.JPG)
>>385638My 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
>>385686Oh 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. 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. 385738
File: 1505258439432.jpg (26.61 KB, 433x380, arcdecercle1.jpg)
>>385725okay, 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. 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. 385754
>>385738It'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. 385762
>>385630It'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. 385776
>>385735Sounds 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. 385778
>>385771Thank 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. 385798
>>385793I'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. 385815
>>385810I 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. 385818
>>385810You'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. 385825
>>385824Holy 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
>>385818I'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. 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
>>385810Define '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. 385913
>>385906Almost 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
>>385913Sleep 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
>>385952Fair 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. 385974
Janiece begins her day with "stabbing stomach pains":
https://youtu.be/C0LuNwtpHLsNow 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. 386155
>>386095Dear 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
>>386155I 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. 386189
>>386175The "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
>>386189I 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. 386347
File: 1505358901224.png (117.83 KB, 750x935, IMG_3295.PNG)
fucking hell
"self diagnosed EDS" (and autism)
No. 386360
>>386347I'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. 386386
File: 1505367132200.jpg (258.02 KB, 960x1280, tumblr_otyfmandU71vjfcwko1_128…)
>>379077superpunkjellyfish.tumblr.com
admits to self diagnosing their conditions, and boy, do they have a plethora of them:
http://superpunkjellyfish.tumblr.com/post/158907782680/about-methey also claim to have POCD (pedophilic obsessive compulsive disorder).
No. 386398
File: 1505368875936.png (170.75 KB, 750x1120, IMG_8563.PNG)
Omgz eds legs!
No. 386434
File: 1505375796056.png (142.99 KB, 750x987, IMG_5527.PNG)
No. 386450
>>386386Actually they say they have Pure O aka POCD (primary obsessive compulsive disorder)
self dx of course, kek
No. 386478
>>386450People 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.phpbut yes, self dx to the max hahaha
No. 386521
>>386360I 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
>>386450Pure 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
>>386450It'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. 386577
>>386570ugh, 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. 386601
File: 1505402480641.jpg (177.3 KB, 1200x1197, IMG_4458.JPG)
>>386599They don't act as if they are either. This is a screenshot from ask fm of them admitting to being predatory.
No. 386602
>>386530Oh sorry, i'm not native in english. Thanks for letting me know
sage for not contributing
No. 386635
>>386386They'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. 386664
File: 1505410498162.png (159.75 KB, 1423x735, IMG_0297.PNG)
>>386635Sometimes, 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. 386689
>>386681Oh 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. 386716
>>386709The symptoms of IBD includes diarrhea, often bloody, fever, weightloss
She never mentioned any of those, such a fucking munchie
No. 386730
>>386718It'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. 386735
>>386730She has already concluded that removing her gallbladder will not improve her symptoms.
>>386716You 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. 386740
File: 1505426761192.png (101.58 KB, 750x871, IMG_4466.PNG)
>>386664This person seems desperate to prove they TOTALLY DEFINITELY HAVE CHRONIC FATIGUE GUYS SEE ???
No. 386746
>>386689Whenever 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)
>>386570This is from superpunkjellyfish 's "anti pedo" blog, what they call "POCD"
No. 386764
>>386746A 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
>>386735tbh, 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. 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
>>386825I 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
>>386825She 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
>>386839All 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
>>386792Its 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.
>>386835She 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. 386887
>>386860>>386858That'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. 386910
>>386746Well 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. 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…)
>>386955The answer appears to be, "No."
No. 386968
>>386842Normally 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
>>386910I 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. 386975
>>386964Won'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
>>386964Wait, 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.
>>386913She 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. 387000
>>386998In 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
>>386998Ok, 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. 387084
>>387071What 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. 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. 387264
File: 1505509484349.png (174.53 KB, 638x704, IMG_2826.PNG)
>>387259She 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. 387327
>>386890>>386938She 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. 387341
>>387264Jfc 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. 387365
…Today's J&J Show…
https://youtu.be/f9acQfsaGYUJaniece'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/-augsfFbMwoJaquie'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. 387367
>>387365I 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
>>387259This 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
>>387367you 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
>>387386If 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. 387419
File: 1505530801131.png (97.88 KB, 679x303, Screenshot_2017-09-15-19-51-46…)
>>387259>>387264>>387402Her script instructs 5ml, but in the comments of the video she says 10ml.
>>387341One 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. 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. 387464
>>387439>>387446What's HP surgery?
And how the hell Did she get kicked out of FOUR surgeries?!
No. 387471
>>387463Yep, 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. 387477
>>387473When 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. 387500
>>387478Exactly!
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. 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. 387548
>>387547Actually 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
>>387544As 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. 387568
>>387562Ah, 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. 387584
>>387527>my brain fog made me forget the ticketsyes. No healthy person has ever forgotten a ticket before, it
has to be pathological.
No. 387593
>>387445kek. 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
>>387593lol 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. 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
>>387554I 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. 387625
>>387603On 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
>>387611O, 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.
>>387587Did 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. 387637
>>387609That's hardly even soup.
>>387628What'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. 387639
>>387625This 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
>>387628When 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. 387659
>>387637For 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?