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File: 1505578849771.jpg (33.36 KB, 420x294, IMG_0875.JPG)

No. 387658

Over-The-Top Spoonies/Munchausen By Internet Attention Whores General #10
Previous Thread: >>>/snow/379077

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

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

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

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

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

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

No. 387667

Other active IG's you might wanna add:

outrageously_helpful_orion aka janice
Unichron_2 aka nicole
Daniliz_life aka endlessvoices
Twistedchronicwarrior aka sophie
Bekah.georgy

No. 387670

Can all the stupid twats who were blogging about their ~so real pain in the previous thread please shut the fuck up? No one cares what patch you're on or whether you call your pain severe. You all sound like munchies yourselves. It's boring to hear you whine like that - post something real or gtfo.

No. 387684

Janiece has whined for days about her pains, oh my pains, finally gets a diagnosis of needing her gallbladder removed and possible Chrons and the very next day goes to the food and wine festival at Disney???? Wtf?

No. 387687

>>387670

They seemed to be using it as a comparison to how the munchies are not experiencing severe pain if they are getting relief from smaller doses and less of a look at me. No need to be an ass if the self posts are not for the sake of self posting.

No. 387688

>>387687
It's perfectly possible to discuss the cows without blogging. These people are taking it way too far.

No. 387690

>>387670
I thought we already discussed previously that talking about our own experiences, at least lightly, adds value to the boards. It would be boring if it was all just photos and bashing. I don't think anyone means to complain about symptoms on here but merely they are just trying to create a picture for you of how ridiculous the other person looks. Usually when I see someone post on here is relative to what we were talking about and they are just adding their experience and it usually gives me a better understanding.

No. 387692

>>387690
To some degree yes, but it has become a majority of stroking each other to say who is worse off and who has what. There has to be another forum for that shit. The internet is a big place.

No. 387694

>>387692
Literally no one has said "I'm worse off" or anything to that degree. The things that have been said recently are not spoonie olympics and they added value. Don't like it? Post something about the munchies that you want talked about. Change the subject. Add your own two sense instead of bashing how other people on the board add value and talk about the munchies.

No. 387696

>>387694
* no one recently

No. 387697

>>387694
Yeah I dunno all I've seen lately is… blah blah.. EDS society blows, pain Meds/med talk about that and how they are hard to get who gets what, migraines.. I didn't really see any complaining. It just seemed educational. That's what I was saying. It didn't seem like one upping. But that's just me.

No. 387698

>>387697
Then go to med school or an educational forum. Can we end this now and go back to what this thread is supposed to be about?

No. 387700

>>387698
YOU can change the direction of the conversation by ya know, posting milk. funny how that works. seems like the only complaining is you ;)

No. 387708

Not to be mean but
seems you are the problem and currently taking up posts and stirring shit up..for attention perhaps?

Moving on.

MLS migraine was mentioned in the other thread and now she is ok enough to go grocery shopping and be around smells, lights, sun and movement..she is on 2 different migraine meds. I'm not sure if one is preventative or not, but she could just have small migraines and it's managed decently enough to function and with all her other drugs she probably really doesn't have many symptoms and she uses her special 2 type of migraine to be OTT about it and get more sweet attention and pity points specially in public and family.

No. 387711

In other news…

What are the bets that Jaquie's feeding tube button hurts because it's already too small? Kek

No. 387713

>>387711
she was just called out on it in the comment section

No. 387715

>>387713
Oops hadn't checked comments I let her witter on in the background. Watch her WKs come flooding to the rescue, if the comment even stays up

No. 387718

File: 1505584329959.png (151.39 KB, 605x1071, IMG_2859.PNG)

>>387715
Comment is still up!

No. 387719

File: 1505584351580.png (59.32 KB, 612x320, IMG_2860.PNG)


No. 387721

>>387719

Wow, get this person an award.

Pain due to outgrowing her button is pretty likely. It happens to people who are given appetite stimulants like Megace and tube feeds at the same time, usually cachexic cancer patients on pred and IV zofran. Suddenly they discover the joys of junk food again and suddenly their stoma hurts, badly. She, on the other hand, is just an undisciplined pig. She wanted the tube… but she'd continue to want to eat junk food.

No. 387723

It surprises me how little knowledge she has with feeding tubes for how obsessed she is with hers..and I cannot believe she went to the ER for that shit knowing they wouldn't really do anything and take up time and a bed for someone way worse off specially with that storm..shes obviously not in that much pain and she could have waited.
Many people end up having a lot of issues with a J tube that causes pain and that pain usually has people doubled over in tears..she won't encounter that with a GJ no matter how much she tries.
If she is purging (not by tube) or vomiting (not on purpose) the GJ can flip, the J port flipping into the stomach and that causes pain (still a lot more than she showed) but she wouldn't be able to use it.
I can't believe her nother would enable this ER trip.. that's just as disgusting as jaqui going for the reason she went.

No. 387735

>>387718
Went through the comments to find this, but i guess it's deleted now
The comments made me so angry tho, so many people talking about how she is a inspiration for people with chronic illness
fuck no, she's not! She've basically given up on life and spend all her time whining
People make her some kind of saint because she waited a couple of hours in the ER like wtf

sage for rage and not contributing

No. 387740

File: 1505586681394.jpg (1.42 MB, 1080x4554, 20170916_133100.jpg)

>>387735
Here is the full comment

No. 387744

File: 1505587130087.jpg (1.43 MB, 1080x6134, 20170916_133715.jpg)

Then there is this one which is fucking great. It got deleted but I have the screen cap I will post after this

No. 387747

File: 1505587199418.jpg (903.46 KB, 1080x3642, 20170916_133933.jpg)

Golden

No. 387758

>>387690
The recent bullshit does not add value. Just stop. Literally no one is interested in "i have this patch wah wah". Take it back to your own instagram.

No. 387760

Try Midol anon

No. 387768

>>387760
We are all anon. If don't quote someone we have no idea who you are talking to.

No. 387775

I wonder how long Jaquie's block list is? I nicely mentioned something about her port cath being exposed all the time outside of her shirt and she blocked me on IG. I bet her block list easily rivals her followers list. People are really starting to see her b.s.

No. 387781

>>387775
People are starting to call her out more recently. I bet there's more, we just don't see it b/c she removes them. Also, I noticed that when someone calls her out, those comments tend to get likes pretty fast.

No. 387785

>>387747

These commentators are my heros. People like jaquie who are such brats and pretend to be pretty much dying all the time even though they're not actually sick give a bad name to everyone who actually have those conditions but are nice, normal, responsible humans. Doctors see patients like jaquie, and then assume everyone with the illness she claims will act like that.

No. 387786

>>387740

Hahaha good to see this isn't the only place where people notice she's just gotten fat

No. 387787

I think it's hilarious that the ER radiologist "forgot" about Jaquie and didn't look at her x-rays for almost 8 hours. Exactly what she deserves. I'd do that too if I had to deal with someone as completely disgusting and attention-seeking as she is.

No. 387789

>>387787

She's already gone through all the comments on her video and deleted anything negative. She doesn't understand that feeding tubes just hurt sometimes. But if you really need it, the pain is preferable to starving.

No. 387797

>>387789
And ultimately that makes sense. It's a foreign object in your body.
I think it's interesting that she was all tight lipped pain face when she started her video and then when vlogging on the way to the hospital she was all animated and all the color was back in her face. I swear this chick gets a high of some sort from this.

No. 387799

>>387789
And as everyone knows she doesn't need it which is probably why she's so worked up over it being sore specially since she says she doesn't think it's anything but maybe the balloon..its no fun to have special accessories when reality hits.
I get the feeling she's trying to get separate tubes (for a while now)
That'll be interesting.
They just need to give her a larger size button or switch back to the longer GJ but it'll turn into some super serious issue that creates many more issues.

No. 387808

>>387708

Thats the thing about Dani - her actions don't mesh with how "severe" she claims her symptoms on. She is constantly complaining about migraines and pain but her facial expression/tone never changes and her actions (loud music, grocery shopping) always seem to contradict her symptoms.
She constantly asks people what she should do about her pain/nausea/dizziness but never follows a single suggestion.
I found it interesting when someone in the last thread mentioned that she was put on disability after having to get treatment for anorexia and how she is now trying to come up with any reason to stay on disability (hence when tests results come back normal she tries to play up another issue). Even her therapist has suggested she needs to get a job. While I am not sure she is trying to cheat the system, I do think at minimum she is terrified that she has wasted so much time being "sick" that the only job she is qualified for is a job where she will probably have to do hard/tedious work for little pay. Right now she is special because she is sick but if she has to start working again she is just going to be an invisible member of the working class.
Also think its crazy that she seems to think that vlogging is going to be successful. Her vlogs have less than 30 views (and I bet the majority come from here to view the ridiculousness). Her vlogs are boring and repetitive - just her talking to the camera about her severe symptoms and not knowing what to do. And figures she can't afford food to follow a proper diet but she invests in a crappy camera that doesn't work for the sake of the vlog.

No. 387812

Erma Gherd… Janiece wears headphones for sensory processing too. I just can't even with J&J anymore.

No. 387814

File: 1505594107939.png (781.55 KB, 666x948, Screenshot_2017-09-16-13-31-46…)

Yes, Sophie's doctors have asked her why she uses a wheelchair.

No. 387815

>>387812
I think she wears them for hearing problems she has had since birth actually.

No. 387817

>>387815
So is Jaquie copying Janiece?

No. 387824

>>387797
Also because it's in an artificially created hole. And there's constantly stomach acid and bile coming out through that hole around the tube, and then the tube is rubbing on the skin. The stoma's almost always a little (or a lot) wet, even with those tube pads. Jacquie obviously had no idea what she was getting into. You don't get a tube because you want one, you get one because there is no other options left to stay alive and functioning.

No. 387825

>>387799
With the conditions Jacquie claims, there are very few reasons to go to the er instead of calling your doctor or just dealing with it at home. ERs are limited in dealing with chronic illness management (since they're designed for acute care), and with chronic illness, you really don't want to be around sick, germy people unless you absolutely have to (especially if you have any type of central line).

No. 387826

>>387814
She needs to be walking for the exercise alone. She barely fits in her wheelchair. Bet her pain would be way better if she didn't have to haul all that extra weight around.

No. 387829

>>387723
>>387825
True, I think she has no idea. I do blame her doctor for that as much as I do her. If you remember, she went in for an NJ and then her GI said they'd better put in a permanent tube right away. If she is telling us the truth about that, of course.

If I'd been me in that situation, I would have said no way, give me that NJ and then we'll talk. I would first want to know about pros and cons, risks, would want to research it calmly at home. And most of all, I wouldn't have been ready emotionally to have a permanent hole poked in my intestines if I was admitted for a temporary nasal tube. No way I would've had anyone talk me into that.

If we are to believe her, her doctor did this b/c he saw no reason to put her through two seperate procedures if it was going to be a long term thing anyway. Well first of all, how did he know that? Why not first tube feed till goalweight and then try to wean her off? And secondly: there are several ways to put in an NJ that don't require sedation. So not wanting to put a patient through two procedures is BS. And I'm not even talking about the fact that some GP patients tolerate the relatively slow feeding rate that comes with 24/7 feeds just fine over a gastric tube.

TL;DR she didn't know what she was getting into. Her doctor shouldn't have offered to put in a permanent tube straight away, and she shouldn't have accepted the offer. But we all know why she didn't.

No. 387831

>>387825
Well unless she lied about it, it was her doctor who told her to go to the ER. She called her GI first. So while there's plenty of things to call her out on, I don't think it's fair to do it for the fact she went to the ER when her doctor told her to.

No. 387832

>>387829
If I remember correctly she objected to an NJ tube because of her "violent vomiting spells"

No. 387833

>>387832
In the video where she was admitted to start tube feeds, she said her doctor told her a permanent tube made more sense. She went there thinking they would put in an NJ.

No. 387834

>>387829
We all know Jaquie convinced her doctor to get the GJ instead of the NJ. That's how she operates. Her statement was something along the lines of, "my medical team and I decided it would just be best to go with a permanent option". She's been KNOWN to be a doctor shopper, going around fighting and "ADVOCATING" for herself until she flipping gets what she wants. She conned her way into the GJ because she basically told the doctor she wouldn't eat anyways lol. And it must've been a dumb enough one!

No. 387838

>>387834
That might very well be the case. But we can't be sure. In her vid, she said a GI doctor approached them. Yeah, it's likely that it did not go down exactly like that, and even if she is telling the truth she may have been leading them on by exaggerating her symptoms. Still, it's a possibility that there is a GI doc out there that is actually this green and thought he saw a very ill young girl and just wanted "the best" (even though that was misguided) for her.

This vid, the 7.30 mark.

No. 387841

>>387814

Jesus Christ, she is BIG.

And I'm talking from a medical standpoint here. She should definitely not be on any opioids until she loses enough weight to see if perhaps less strain on her MSK system could reduce her pain. She has a clear high body fat percentage and is probably immensely deconditioned, and sitting in that shitty wheelchair (it isn't even a decent one, it's like a cheap hospital or transfer model!) will cause her immense long term spinal pain. It's like she's trying to hurt yourself until she actually needs morphine. I am also very suspicious of people who describe it as 'my trusty morphine'… chances are, she'd have been fine on this trip without morphs if she hadn't gotten a big ass bottle of the stuff yesterday. She will go through it in record time, and she will start demanding 300ml for a month. Which is still nowhere near a lot (300 mg MST equivalent is a common DAILY dose for people in severe pain), but this stupid moron just ratcheted up her opioid tolerance three times. Well fucking done. The comedown will be epic. Cue mopey photos and threats of self harm.

No. 387844

>>387834

Not to give any tips here, but there are some magic words that would make any GI, however senior, think about going straight to a permanent tube. The problem with spoonie groups is that they exchange these little tricks that they then come to us and try to play us with, and a lot of the time, there's not a lot we can do. Especially in the NHS, where we don't necessarily have the vast amount of diagnostic resources to corroborate patient claims about aspiration risk and potentially vomming up the tube. I have seen a detailed description in a GP support group once on how to vomit up a tube to convince a doctor to get a permanent tube. These sick fucks keep trading ideas on how to play their doctors.

No. 387846

Also, what did she say in her most recent vid about how she was dangerously malnourished before the feeding tube, and isn't anymore? How can that be, if she's only running it on 20, 25 ml an hour? That doesn't make sense. A week ago, she said she had lost weight, and now her tube feedings have reversed that very severe malnourisment? Wow. I wasn't even severely malnourished, but can still tell you that you need to gain A LOT of lbs back which takes a much, much higher rate of feedings before you actually start feeling better. If you're at about 1/3 of your goal rate, you get MORE malnourished every day. It doesn't reverse you from a "severe and dangerous" state of malnourishment. Not even close.

No. 387847

I actually think Endlessvoices does believe she's seriously ill. She seems like she has a low IQ, she's very isolated and I think not much goes on in her life, so she perhaps focuses on tiny fluctuations in her body to give her something to obsess over and occupy her time. I don't think she has munchausens because she chooses to make herself sick on purpose - but more because she doesn't actually understand she's causing her symptoms and is convinced she's dying. More like hypochondria, to me.

No. 387849

>>387846
She was never malnourished, you can tell by her pictures. It usually takes months for someone who started out malnourished to gain back a healthy amount of weight, and the feedings have to be running much higher that 25 ml an hour. (Another reason to start with an NJ tube, if you actually can't tolerate anything faster than that, tube feeding won't be successful and it would be detrimental to go through surgery). Jaquie's doctor is definitely complacent, but we all know that Jacquie lied and manipulated herself to get the gj tube. She eats way, way too much to need it. The only reason she actually "vomits violently" is if she's purging.

No. 387850

>>387847
Hypochondriacs don't illicit symptoms at all, unless they do something like take a preventative and end up with typical side effects.

No. 387851

>>387850
I don't think she realises she's doing it. Also I'm 99% sure she's prescribed an antipsychotic. She's very quiet about what that is for. She could easily be both too low IQ to understand what she's doing and too delusional about what she's doing.

No. 387852

>>387849
I know, it's just that she really contradicts herself. She says she's been loosing weight, but she is also so glad with the feeding tube b/c she is not severely malnourished anymore. Wut?

No. 387871

>>387852
She says whatever she wants, unfortunately for her the evidence says she's a liar. She wasn't malnourished, she can eat all sorts of crap that she wouldn't be able to if she actually had severe GP, and she's gained weight way faster than what's possible with what she claims she eats/tube feeds/vomits up.

No. 387883

>>387851

I think its a combination.
She definitely has some psych issues that she is very quiet about and I think that is most likely the underlying cause of her munchie behavior.
She has mentioned that she is the surviving twin of a rather premature birth - given her age, there is likely some lasting cognitive effects. I think she was sick when she was young and so her identity was built around being sick (and also resulted in her being overprotected/babied). She may have grown up with parents who overreacted to every little sniffle.
I do think she exaggerates her symptoms - and this may be due to her hyperfocusing on everything little thing. In her mind she isn't actively inducing them (she thinks she is working on the diet and taking prescribed medications) but what since she is presented with so much information about what she is doing to make things work and she comes up with a million excuses why.
She is lonely and isolated and definitely has some mental health issues going on. But what frustrates me is that she has the potential to improve her life. It might not be easy and will take some real work on her part but it is possible. She needs to be more honest about her mental health instead of creating excuses and focusing on the physical symptoms (that may very well be a side effect of the mental health issues). She seems to have no friends, no hobbies, nothing besides laying around and wallowing in how sick she thinks she is.
She has the tools to help herself and is not using them. So many people would jump at the chance for some of the resources she has.

No. 387903

File: 1505605601267.jpg (191.38 KB, 667x1000, IMG_1444.JPG)

Any of you guys watch Big Brother? It's a reality show where they're recorded and live streamed 24/7. One of the contestants this year, Raven, is really something.

Here's a compiled list of every disease or ailment she's claimed to have in the past couple of months:
https://www.reddit.com/r/BigBrother/comments/6xrf6b/complete_list_of_ravens_ailments_lies_and_claims/

A few highlights:
>She is dying of two terminal diseases. She has been sick since she was 8 (or 15). One is Raven’s Disease, which is so rare only she and a family in Sweden have it.
>She, her brother and her mother need a new pacemaker every year.
>Her mother’s gastro was activated when she gave birth to Raven, but her brother’s hasn’t been activivated yet. But he still has it, and will need a new pacemaker every year.
>She can’t eat steak or she will die. Well, she won’t die but she will scream for hours. But hamburger is okay. She can’t eat chicken. (Yet she does.) She doesn’t like milk. (Yet she drinks it all the time and eats ice cream like there is a famine.) She can’t eat hot dogs.
>She has an inverted spine.
>She has now self-diagnosed salmonella in her finger.
>Her bones are disintegrating as well as her cartilage. She needs surgery on everything.
>She has Rough Kneecap Syndrome. She has to get them surgically shaved down.

It's also worth noting that this reality show has decently intense physical comps, which she never would have been allowed on if she had serious medical problems. Her entire strategy this season has consisted of trying to get people to pity her, and one upping anyone anytime someone complains about having physical pain or weaknesses.

>"The second I met Raven she showed me her pacemaker. Maybe lead with a handshake."

-Actor Bobby Moynihan, after meeting her.

No. 387904

>>387903
kek if she disclosed any of that shit to the producers they wouldn't put her on the show for legal reasons and her docs never would have let her do it. Like you said, the show involves highly physical things which would aggravate healthy bodies let alone sick ones.

As I was reading through the list, I thought you had written a fake list of stuff to exaggerate how bad she is but holy shit

No. 387906

>>387904
Nope, didn't make any of it up. If you search "BB19 Raven" up on YouTube, there are enormous compilation videos about her lies and supposed "diseases". Even if some were true (which the general consensus is that her Gasteoperisis is), it's still OTT exaggerated, with her bringing it up whenever she was at risk of being evicted, or anytime someone else complained about having a bad back or that their leg hurt.

Vid attached is a short show edited compilation of her being a chronic liar. They chose not to focus too much on her disease stuff for obvious reasons, considering her mom is a crazy hover mom who would probably threaten legal action if they got anything wrong.

No. 387928

>>387906

That video is pure gold. She is notorious for claiming to have gastroparesis as well, even with ample footage of her scarfing down absolute junk.

Raven has all kinds of shit about her spread around the Internet. She was apparently begging viewers for money for medical reasons? #ravenexposedparty is a milky Twitter tag. I haven't watched the show, but think this season is over/almost over?

No. 387930

>>387928
The season finale is over in four days, so yeah it's almost over.

No. 387953

File: 1505612795368.png (275.71 KB, 1230x1974, IMG_1691.PNG)

So sick that she's on state disability, but able to go out drinking (which can't be good for GP and Chrons). Don't think she's a munchie but def OTT.

No. 387954

File: 1505613168064.png (661.6 KB, 1536x2048, IMG_3179.PNG)

"Malnourished"?!

No. 387955

I wanna know how in the hell you get stretch marks that badly. And there's no way in hell she's malnourished.

No. 387958

>>387814
Maybe it's petty but something that kind of annoys me is how so many spoonies seem to feel the need to explain themselves when they post a picture of them doing something fun or normal. Like make sure everyone knows they were still symptomatic and how brave they were to go do something normal anyway. Idk. I guess it's just they don't want to give off the idea that they're doing better or something so they make sure to include their symptoms in the caption instead of just "had fun looking at tanks".

No. 387959

>>387955
>>387954
Anyone can be malnourished and at any weight.

Those stretch marks look like she has been much much larger and lost a lot of weight

No. 387960

File: 1505613932237.png (357.17 KB, 1242x1488, IMG_5587.PNG)

Not to keep beating a dead horse but here's a gem posted by the EDS society today. With an organization like this "advocating" for them it's no wonder we have so many EDS Warriors to talk about on this board.

No. 387961

>>387958
The EDS, CFS, and "neurolyme" girls are terrible for this.

No. 387963

>>387960
okay, they really are the worst chronic illness society. They make a mockery of EDS.

Lara Bloom should step down :/

No. 387966

>>387963

It's the ultimate mockery. And this is coming from someone with EDS, I just wish there was an EDS organization that actually did something useful for people who genuinely need it. Not saying hyoermobile EDS patients don't need advocacy too, but 1) Victimization is NOT advocacy and 2) spoonies who write articles for the mighty or have high profile hospital glam Instagrams are the main ones who get any acknowledgement. I think EDS Society even shared that article about Carmel getting denied benefits. Rarely do I ever see them try to help people with Vascular EDS, for example or do anything of real value. They just organize Zebra Balls and talk about what a "broken, neglected" group of people we all are. Dysautonomia International is starting to move in a similar direction as well.

No. 387968

>>387961

Kek don't worry we can see your transport wheelchair and vogmask, no need to explain how sick you felt

No. 387978

>>387966
Most of what they share is from The Mighty, which is a total joke in itself. Anyone can write an article for them, and claim whatever illnesses they want, no one's checking. Having EDS doesn't make you a hero, it makes you a normal person like most of the world. If you live a life outside your illness, great. You're still not a hero. You're just not a munchie.

No. 387985

Lara bloom is annoying as all hell>>387963

No. 387988

>>387955
Those stretch marks look like she's been on high doses of steroids. If she really does have Crohn's, prednisone or medrol is a first-line treatment and anyone would be absolutely covered in stretch marks and scars after a few months of constant steroid therapy, much less years

No. 388000

>>387955
Those look like striae from long term corticosteroid use. Stretchmarks from normal weight gain are rarely that violent looking.

No. 388002

>>387834
SHe doctor shopped to get a GP diagnosis, first test and doctor said she was fine, so she probably dosed up on Benadryl and re-did the test to get the sweet sweet tube she wanted. Not to mention two doctors including a geneticist told her she did not have EDS, so she went with the "probably eds" diagnosis that got her referred to the doctor who said she didn't have it. Anything to get a diagnosis. Disgusting.

No. 388006

>>388002
Benadryl
wouldn't effect her motility any..other than allergies its commonly used for nausea

No. 388013

>>387814

The few times I've had morphine I got incredibly nauseous. Maybe that's what's causing her nausea too. Just a thought.

No. 388016

>>388002
In the vlogs leading up to the tube she wasn't eating and going on and on about how she couldn't eat. She was depressed and tired looking but definitely not in this "dangerous and severe state of malnourishment" she keeps talking about.

Then after she got her precious and much anticipated tube, she could suddenly eat again. It was a miracle. Cherubs strummed harps and birds sang and the blessed Lord himself himself smiled upon Jaquie, as she began stuffing her face with fried chicken, fried shrimp, Mac and cheese, cheetos, oreo cereal, chocolate milk, ice cream, fibrous veggies (but not too many! Can't have too much nutrients now!) Turkey, coke, more fried chicken, more ice cream, chocolate milk again but this time for breakfast…

No. 388030

>>388016
How to get that sweet, sweet tube; a tutorial by jaquie:
1. Fake an illness that's known to cause GP
2. Lie to your doctor about your "worsening symptoms"
3. Purposely don't eat or drink anything. It only takes a couple days to start feeling and looking like shit (anyone who's ever had the flu knows this)
4. Purge (optional but highly recommended step)
5. Whine to your doctor more. Try to be dramatic as possible.
6. Doctor gives you your precious precious toob
7. Not eating is hard. You're hungry. You've got your toobz, commence eating whatever you want.
8. Whine some more until you get your buhton.
9. Whine some more about anything you think of
10. Gain weight you don't need to gain, but make sure you tell everyone you can't eat, can't tolerate your feed, and are malnourished. Soak in that sweet, sweet attention.

No. 388034

>>387903
It must've killed this bitch when Christmas broke her leg and got tons of attention from literally everyone. Must've been unbearable for the cast.

Not sure she's a munchie but definitely OTT and a compulsive liar. And delusional as fuck. I'd say she could use her own thread if she wasn't less than a week from fading into obscurity.

And the fucking cartwheel she did when she was evicted…definitely activities people w severe arthritis do.

No. 388036

What I've found fascinating is in endlessvoice latest video she says her mom cooked her favourite meal chicken and potatoes and then goes onto say I know I'm supposed to be on an all liquid diet and I know I'm not handling solids well but I'm gonna have a little bit of it and hope it stays down - BECAUSE I DID DO A LOT OF WALKING.

Bringing up exercise as a reason for allowing herself to eat seems ED driven not gastroparesis driven. It's like she's using GP as an excuse to avoid eating too many calories, but if she's exercised enough in the day then she'll let herself eat more.

No. 388040

One thing that has always irritated me about Janeice is that she says she has this hearing loss, and I believe she has said she'll eventually lose most of her hearing, but she never mentions knowing or learning ASL. It seems to me that if you were going to go deaf you would want a way to communicate.

No. 388051

>>388040
One thing that's always annoyed me about Janice is her damn eyebrows lol.

(In one of J&Js vlogs right before the hurricane Janice is doing her brows in the mirror and she's like "gotta keep these brows on fleek!" Uh… Yeah.) Someone should tell her the tadpole look isn't a good one.

No. 388057

>>388040
Nah, depends on how quickly you're losing your hearing- and doctors and audiologists will never say definitely when you'll lose it. They probably said she MIGHT lose it in 30 or so years.

No. 388071

>>387958
I don't think it's petty, I think it shows their state of mind. Apparently, they are terrified some stranger on the internet might doubt their very severe symptoms. It's the same thing as posting a picture of food and be sure to mention that it will aggravate your GP/IBS or that you might have an allergic reaction. I don't do social media, but if I did, I'd be the other way round: I think I'd make sure to post enough pics of me doing normal stuff even if my day was not so normal, for fear of being whiny and boring.

>>388040
She did mention somewhere she started to learn it as a kid b/c docs said she would become completely deaf. But she has forgotten almost all of it b/c her hearing didn't get worse (? something changed, I'm not sure what) and she hasn't used it in so long.

>>387903
THAT is hilarious. I'm not even sure what I just read. What the heck is an 'inverted spine'? Does she mean scoliosis (which - judging from that picture - would be quite mild) or what?? If so, I've never seen anyone describe scoliosis as an inverted spine. But I'm not sure what else she could possibly mean.

No. 388073

Ok, this here gastrofag's review of Raven:

> 1) She is dying of two terminal diseases. She has been sick since she was 8 (or 15). One is Raven’s Disease, which is so rare only she and a family in Sweden have it.


I'd love to know what that is. There are very few diseases that rare….

> 2) She, her brother and her mother need a new pacemaker every year.


Are we talking GNS or cardiac? For both, yearly exchanges are overkill and indicate the patient is not a good candidate. Cardiac pacers last long (on the order of decades), GNSs tend to last 2-5 years at the very least. There is no clinical reason why they would last less for some patients.

> 3) She can’t have children because her uterus is too small and one of her ovaries is fucked. She needs a hysterectomy, in fact her doctor was insisting she have one before she entered the BB house. She wants $25,000 so she can freeze her eggs.


Not an OBGYN, but that sounds excessive for freezing eggs. Colleague had hers frozen recently, costs range between $8-15k.

> 4) She needs knee surgery.


See below.

> 5) She has arthritis.


Always suspicious of people who don't specify if they have OA or RA.

> 6) She has endometriosis, which she says is a rash all over her organs.


Oh dear God.

> 7) She had to get four, I mean five stitches when she fell down the BB stairs. She was checked for a concussion, and hurt her elbow, butt, and head.


If she truly has EDS, would stitches not be contraindicated?

> 8) She has one, I mean two years to live.


That's an unusual life expectancy. Other than for certain forms of cancer, life expectancies are either very short term (<6 months) or 'indefinitely shortened', meaning we can't tell when you'll keel over, just that it'll be sooner than for most others.

> 9) Her mother’s gastro was activated when she gave birth to Raven, but her brother’s hasn’t been activivated yet he has it, and will need a new pacemaker every year.


I don't know what she means by activating gastroparesis. That's not how it works.

> 10) She has a mutated chromosome 10. She also has the gene that will pass the disease on to her kids, but her brother doesn’t.


GP doesn't have an identified gene or predisposing gene. She seems to posit a mitochondrial transmission pattern, but that far from substantiated.

> 11) She had to get 11 stitches when a pair of scissors got stuck in her leg when she was taking out some trash. Her friend who is an RN stitched her up at her house.


No RN would do that, liability issues abound.

> 13) She has died twice on the operating table.


Experiencing asystole on the table is by far not as rare or devastating as it sounds. It's relatively frequent and most people survive it. I've seen it happen a few times and doctors just shock you back.

> 14) When her pacemaker stops working she will starve to death.


That's not how the GNS works. In fact, studies show the only appreciable effect of the GNS is on nausea symptoms, not actual motility.

> 15) She has had a concussion.


That explains a lot.

> 16) Every nerve in her body will die, and her organs will die.


And so will all of ours. It's called being human.

> 17) Her leg muscles deteriorate every year, she can tell a difference in them just from last year. She hurts worse every day.


Deconditioning?

> 18) An iphone will turn off her pacemaker if placed on her stomach.


No, it most definitely will not.

> 19) She (her pacemaker) will explode if she goes under 10 feet of water.


Ditto. A patient of mine with a GNS is an avid wreck diver, she has been way deeper with no issues.

> 20) She was being scouted for the Olympics, but unfortunately around that time she shattered her growth plates.


Mmmhmmm.

> 21) She can’t eat steak or she will die. Well, she won’t die but she will scream for hours. But hamburger is okay. She can’t eat chicken. (Yet she does.) She doesn’t like milk. (Yet she drinks it all the time and eats ice cream like there is a famine.) She can’t eat hot dogs.


I don't quite understand how it works. There are some metabolic disorders that mean eating steak might be a bad idea for you, but generally they're never immediately fatal. Her description of her illnesses is at odds with how medicine works.

> 22) She has an inverted spine.


Wtf is that? Scoliosis? Kyphoscoliosis?

> 24) She says she broke her hand and walked around with it encased in a ziplock baggie for several hours, but then it was suddenly fine.


Pure magic.

> 29) Open, gaping holes left in her stomach after her surgery, in which she could see inside her stomach. There was blood and pus oozing out. After her scissor mishap, she could see the meat in her leg.


Unless she's a fistulated (lol)cow, I seriously doubt this to be the case. Permanent openings through the peritoneum that aren't filled with a stoma coming out or a tube going in are generally not done, for the reason that they tend to kill you real soon

> 31) Her brother will pass away quicker from the disease, because it hits men harder than women, doctors don’t know why.


I thought she said it's somehow not activated in her brother. Some weird genetics going on there.

> 34) Raven's mother's kidneys are not where they are supposed to be.


Sometimes, organs are in weird places, they may be inverted or even all of them may be mirrored, but pairwise organs like kidneys tend to stay where they are supposed to.

>. 36) They keep her for hours at airports, she was crying because they thought she was a terrorist.


Speaking as someone with a spinal cord pump and with a lot of patients with GNSs and a few with pacemarkers and spinal cord stimulators, I cannot see why. Patients are given a small card to carry that explains to TSA what's what and how to treat them, millimeter wave backscatter X-rays can also identify implanted pacemakers easily.

> 38) She was awake during a surgery because the epidural was in backwards.


I don't know what that even means, but the epidural doesn't put you to sleep, it merely reduces pain sensation, so she would have been awake anyway.

> 41) She stopped growing at age 13. Her disease stunted her growth.


Normally, she would be prescribed HGH, no?

> 42) There is only one doctor who specializes in Raven’s Disease and he is about to retire, other doctors say it’s all in her head.


Not suspicious at all…

> 45) She signed her life away to live. Her doctor can do whatever he wants to her, he can cut her open for shits and giggles.


Such agreements simply don't exist. They're diametrically opposed to all rules of professional ethics.

49) She has now self-diagnosed salmonella in her finger.

What?! How do you self-diagnose salmonella short of having a microbiology lab at your disposal, and how do you have it in your finger only? Salmonella can cause a non-GI bloodstream infection, but I've never heard of it being localized and limited. I think she meant S. aureus?

> 51) Her bones are disintegrating as well as her cartilage. She needs surgery on everything.


Which raises the question of why. None of the diseases so far explain why her bones would be affected,

> 53) She has Rough Kneecap Syndrome. She has to get them surgically shaved down.


Was discussed earlier, as PFPS. It's a harmless, selflimiting condition.

> 55) She already gets mammograms because her mom had a cancer cell removed from her breast.


That's hardly THAT unusual at her age,

> 60) If she touches an electronic rat trap her pacemaker will go zap and turn off.


That's unlikely, though I don't know a lot about rat traps.

> 61) If she goes through a metal detector her pacemaker will turn off.


That, however, is definitely bullshit, GNSs are metal detector safe.

> 63) Her doctor in Sweden diagnosed Raven’s “Raven Disease”, although they have only communicated through email.


That's fantastic medical practice right there.

> 67) She had to turn down Cody’s aggressive advances, but he told her it was for the best anyway because she couldn’t have children. She has also had other guys tell her they didn’t want to be with her because she couldn’t bear their children from her prodigious bloodline! So then Cody had to satisfy his lustful urges by just staring at her breasts and making her uncomfortable.


This is, to be fair, a legitimate fear of many chronically unwell people.

> 73) Some people with gastroparesis can cure it with the right diet, but hers is so severe, the “highest”, and hasn’t been named yet.


Do these Munchies believe we keep a list of whose GP is the most severe? Like a mashup of the ICD-10 and the Guinness Book of World Records?

> 75) If she didn’t have a pacemaker, food would just rot in her stomach until she threw it up. She can go a week eating spaghetti, then wake up and suddenly hate spaghetti!


See comment supra re. GNSs and motility.

> 76) If she won $25,000 she said she would pay off her car. Matt had to remind her that replacing her pacemaker is more important.


Well, wouldn't her insurance take care of most of that?

> 77) She made a will at 14.


Over what property? I think she means an advance directive, which however is ineffective when made by a minor.

> 80) Her veins are so tiny that nurses leave her IVs in until they blow the vein. She has scars from the infections in all the blown veins. One time the nurses couldn’t find a single vein, so they had to take her to an ER doctor to get an IV in her.


That's not that unusual, but most hospitals have an IV team who can do ultrasound guided insertions rather than bothering a poor ER doc with it. It's pathetic she can't even get her facts right.

> 83) She has had her colon removed.


Ok, that's not entirely unusual, though from the two photos or so that I saw, she does not seem to have the right kind of operative scar. Admittedly they weren't the greatest photos…

> 89) She was born vomiting right out of the womb (which was a sign of gastroperesis)


Postnatal vomiting is not uncommon and is not a sign of GP.

> 93) She has no cartilage in her knees


Errr….

> 94) She has autoimmune connective tissue disease.


Which one? That's like saying she has a blood disorder, which may be anything from mild anaemia through sickle cell anaemia to leukaemia.

> 95) Raven's mom is getting "full knee surgery" while Raven is in the BB house


That's supposed to mean total knee replacement, right?

> 96) Raven had to be catheterized for her kidney problems as a young child.


Catheters don't help kidney problems unless they're caused by urinary retention causing reverse pressure on the kidneys.

> 97) Raven had a seven inch needle shoved up her rectum as part of a treatment for something


I don't even recognize that treatment and I'm a gastroenterologist.

> 98) Her grandfather is 85 and works as a jet mechanic. He works everyday to make sure her mom gets treatment.


If true, that's immense devotion. Though at age 85, I doubt he could do such a physically demanding job.

No. 388079

>>388073
Ok, some of these comments are even more funny than the original list. Thanks for making me laugh. I think you actually cured my severe and dangerous malnutrition with that. And my dislocated nose, which was caused from me being born with an inverted head. It's hereditary to the highest grade, so even when I'd choose not to reproduce, ALL my children will have it too.

No. 388088

>>387903
Jesus this is that "glass bones and paper skin" spongebob character irl. Are we certain she isn't trolling ? I just can't believe someone could be this obnoxious and have it be 100% sincere

No. 388094

>>388079

So sorry to hear you're cured, what will you post on Instagram now? :(

No. 388097

>>388088
It'd be real nice to think that she's just playing it up for the cameras and has some form of self-awareness, but I doubt it. Her family has been shilling her to news stations for over 7 years now, and created multiple fundraisers in her name. She's seemed to look for attention at every turn in her life; she just has a bigger audience for it now.

No. 388126

>>388088
That's what I wondered too, because it was so extremely OTT. Then I did some internet-searches and sadly, that is not the case. I'm afraid it is starting to look more like some weird FD/MBP combo the more I read about her and her family. In a way, I feel sorry for her.

>>388094
Don't worry, I have about 28 diseases left. Winter hayfever, auto-immune type cold, hereditary foot fungus, several birthmarks that have now become chronic, an undiagnosed disorder where I have a bowel movement almost every day, and one I keep forgetting.. what was it called? Wait, I remember: severe IQ deficiency. There is no cure for that one. It can be managed by social media and a lot of selfies though.

No. 388127

>>388126
Another thing: I don't watch the show, but someone posted before and after photos of her which clearly showed she gained a lot of weight since the show began. As I understand it, contestants are pretty much locked away with no contact with the outside world, yes? If that's true, this could be what we call a positive seperation test. That's where a child that is removed from the mother (I could say parent, but with MBP somehow it's always a female) recovers from their illness/ shows no symptoms during that period. Something to think about.

No. 388128

>>387808
If I have to hear "muh nutrition" from Dani one more time I am gonna scream.

She was actually more animated this latest video (after reading here? Her little bitch-fest seemed to address a lot of the things we regularly comment on here). But it still didn't mesh with her "I am in so much pain" whining she constantly mentioned in passing just to remind us.

I was really put off by the constant signing off and then suddenly an added afterthought of 'and another part of my day' which was pretty redundant, boring and all obsessively focused on food. As someone with UC I get it, when you are malnourished you kinda get a bit food obsessed, but she could easily be helping herself with calorie and nutrient rich liquid foods and suppliments (even on her budget), she just seems to want to wallow in her super sick persona.

No. 388129

>>388127
Yeah I was actually just going to write about this. She is almost a text book… case of munchausens by proxy of her mother. I knew about her mother but after just watching that video I feel like you can just tell something is so wrong there and she's just off putting, everything is so forced. Ravens mom also did note before she went on big brother; "She has good days and she has bad days. Sometimes she just can't even get out of bed some days and she's just so sick.. " etc. except … I've been religiously watching big brother this season (as I always do) and I've not once seen Raven have a "bad day" or even come close to acting like anyone I've known to be chronically ill. She has had more energy in that house than any of those people combined. She's always doing cartwheels and flipping around, eating junk, hyper or yelling. I'm assuming when she's home her mother tells her when she needs to rest most likely, or that she must look unwell or something of the sorts.

No. 388169

>>388040
The majority of people who become deaf as adults do not learn ASL, even though it would help them. Unfortunately there are even children who are born deaf that are not taught sign language either, which is actually really sad.

No. 388176

>>388036
Its could be ED or its her response to reading some of what is written about her on here. It has been mentioned several times on here that she lives a very sedentary lifestyle and spends most of her day lying in bed and has been suggested that if she got out a bit more it might help things. So in her mind, she is still trying to follow recommendations since she did the tiniest smidgen of exercise (I have stopped watching her videos since they bore me and I don't want to give her the satisfaction of another view count)

>>388128
She has admitted to reading this thread before (and while she claims to hate it I think part of her likes it because any attention is better than no attention - when things quiet down about her on here she tends to up the ridiculousness). So I anticipate a short period of time where she will try to be more animated (even if it doesn't match with her "I am in soooo much pain" whining). She recently posted a crocheting picture - probably because it was mentioned on here that she has no hobbies.

No. 388181

This is so BEC but they aren't blueBURRIES Jaquie they are berries. Berries. Fucking Berries.

No. 388183

It is so not cool when Jaquie calls her mom or Judd her service humans. Wtf? They are people and they are kind enough to help you. They aren't servants.

No. 388187

>>388183
Everyone is a servant to her though. She is so bossy and orders everyone around. She has even made her fucking CNA hold the camera before. That irks me so bad like, "here VLOG for ME" it's so rude. You can tell even in the vlogs everyone looks so annoyed with her because she's just constantly making them do shit. I can't imagine what that's like. All she is doing is sitting on the couch and giving orders. She could very well use her walker and get up and fucking do it herself.

No. 388198

>>388183
Ew. She's a spoiled brat who's discovered that being "sick" means she can demand everyone take care of her and allow her to ignore the responsibilities that come along with being an adult.

No. 388199

>>388187
Or she could stand up on her own two legs without her walker, since she doesn't need it. Everything is just a prop to her.

No. 388201

>>388199
Her shoes were less than five feet away in this video. She was on the couch. There is a chair next to her on the way to her shoes. She could have stood up, took two step and sat back down to put her shoes on but instead she made Harlow get them. Never in my life have I known such a lazy cow. I have known people with terminal illness and with life changing devastating injuries and even they put forth more effort. She is so lazy, self serving and opportunistic.

No. 388224

>>388201
Person who actually has EDS, pots, and GP here: you can actually live a somewhat normal life with all those things! I work, have real friends, and exercise and haven't died yet

No. 388258

>>388224

Munchies don't want to live a normal life.

No. 388259

>>388258
Munchies are the opposite of a normal person with chronic illness, they want to be sick

No. 388262

File: 1505674528029.jpg (213.41 KB, 226x542, pain.jpg)

Wasn't she perfectly finde a week ago before she was mentioned here?
How can you even recoginze 3 children, while you have 10/10 pain? Are there any screenshots from her instastory? And where was the 10/10 pain?
It's always funny that she expects to get a quiet room far away from actual sick people in the ER.

No. 388294

>>388262
Pretty sure she would have been unconscious with 10/10 pain (since that's pretty much the description of that level). But she wasn't out of it even at all, since she remembered everything in such detail.

I smell bullshit.

No. 388299

File: 1505677736383.jpg (756.61 KB, 1440x2083, Screenshot_20170917-144016.jpg)

She has not mentioned anything about the biopsy they did to test her for celiac and lactose intolerance. Probably because they came back normal just like they did the last time she was tested.
She used it as a way to get away with ED behaviors and even added having to be vegan along with no gluten and no dairy….which if she decided to go vegan again it's a perfect excuse to not follow any GP diet because it's just to hard!

No. 388300

File: 1505677770369.png (376.27 KB, 1440x1926, 20170917_144232.png)


No. 388307

File: 1505678566291.jpg (607.83 KB, 1080x2549, 20170917_144400.jpg)

She absolutely gets on here still and probably uses it more for ways to get sicker like the other munchies talked all about here..
Which is funny in it's own way.

It is just stupid she will not stick with a fucking diet she can tolerate. All she is doing is trying to make herself feel worse so she has something to do all day in her bed.
I guess she's really trying though. I means she stayed on a full liquid diet for what 12 hrs. This time? And never really did partial with soft/puree and eats solid shit that she knows isn't going to do anything to help her special GP.
This is prime example..she knows there is no reason she cannot digest liquids and purees. She also knows she really shouldn't have much issues with certain solid foods. Yet what does she do with that info?
"My stomach is a rock because I ate shit I shouldn't have and I don't feel like purging it so I'm fucked and can't do proper liquid diet the rest of the day (or week with her) "
Ok..try drinking food instead of shoving your face with shit.
She is trying so hard to get a feeding tube now.
I am waiting for her to be all over a gastric bypass and/or the gastric stim.
News for her though…they generally do not give people with history of an ED the stim. They do do it but some places will not. And she is high risk along with her other mental illness.
She can aim for bypass all she wants but it's not bad enough to need it and they generally would not do that on a sketchy situation with ED and other serious mental illnesses.
And shed only have a drain while healing no feeding tube.
I wouldn't be surprised if they eventually give her an NJ, but honestly I don't think they will anytime soon since there's really nothing wrong like she makes it sound.
Tubes are used when a person cannot get enough nutrition orally.
She can if she followed her needed diet. And with meds she'd likely get to have real food too, something many people with GP cry over so so happy they can eat a little more normal.
Her response to the entire situation is not normal of someone who isn't doing it to themselves and the Drs will pick up on it.
Times is ticking away.

No. 388311

>>388128
Specially since she is not malnourished in anyway
Her labs don't indicate she's starving or dehydrating and while she claims she can't eat and throws everything up and liquids suddenly make her nauseated and she throws them up in a flair..to push for her precious feeding tube, the Drs will look at the whole picture and professionally laugh at her ridiculous antics. (As in help her get involved in more psych treatment as they start finding out she's doing it to herself and faking because absolutely nothing makes sense from her except the facts..the Drs, the testings, the lab results. Science doesn't lie)
At which point she will refuse temple and munch it up back home again just as miserable as ever. Probably refuse to sign medical release info and all that.

No. 388322

Jaquies mum really didn't look too impressed at being called a 'service human'. If that was me I would have opened the door and kicked her munchie arse out of the car. Either that or bitch slapped her in the face.

No. 388328

How have Chloe Leanne and Jaquie not got their own threads yet? Surely they are too munchie for one thread to contain.

No. 388334

>>388322
Muchie Olympics: the Hunger Games edition
Jaquie vs. Chloe vs. MLS

No. 388353

Jaquie's giving her dog a "day off," omg at least one video I don't have to deal with watching her lazy ass make the poor dog get a blanket.

She's also not on her feeds because she "doesn't feel like it," at least for a good duration. God.

Re: autism: Jaquie forgot to pretend be confused by a figure of speech today…kek

(I would make a thread if I was more learned in lolcow)

No. 388377

>>388353
Day off??? Hahaha I'm laughing. That dog is practically always off! All her and Jaquie do is lay in the house together! I know she gets her blankets sometimes and water but that's hardly "service" dog work. A service dog should be out and working. She's deconditioning the poor dog along with her.

No. 388378

>>388353
No no no not how it works, Jacquie. If you actually need tube feeds and depend on them, as she claims, skipping your feeds makes you feel like shit, and can seriously mess up your blood sugar. Her inability to lie correctly would be funny if she wasn't so manipulative of everyone around her. It's an insult to anyone who's depending on a feeding tube who wishes they could have a day off.

No. 388386

>>388353
Of course she's not doing them because she's not feeling well..she just made a huge stink over her button pain with less than satisfying to her results of the whole thing.
So after doing all that why use it? She can get extra pity points from crying about it online since she didn't get what she wanted at ER.
Then she will complain how much worse she feels for missing her feed..but that is stupid since she runs such low rate and doesnt have a problem getting enough in orally.

When she gets a reality check it's going to get ugly. It feels like it's going to be her rock bottom and the end..like Judd leaving or someone close dying or her Drs ceasing treatment and tube use/removal OP or maybe during an admission and she ends up back in the hospital after that and dr shopping unable to find treatment elsewhere and she gets screwed when they admit her because the dr top priority is to do no harm and at that point all hell will break loose and I don't think She will worm herself out of it. (I also see MLS ended up like this too)
However the really good news for them is with no real medical reason for the needs they claim and the utter sad attempt at trying to convince the Drs, they will finally get the help they need for a serious mental and physical illness- munchie-ness (I always misspell it, sorry)

No. 388434

>>388073

Sage for no contribution, but if this anon see's this… your wreck diver friend…do they happen to have a J/GJ tube? I have one and am also an AVID diver but have not been able to find ANYONE, doctors included to tell me if diving with a GJ is okay. I am itching to get back into it.

No. 388465

>>388386
Tube feeds don't make your button site hurt. What a dumb bitch.

No. 388466

>>388386
I hope they lock her up in the psych ward as well as pull out her tube and remove her port. Otherwise she'll just keep doctor shopping and getting what she wants. If she doesn't get sepsis and die first.

No. 388535

>>388434

I am the anon with the wreck diver patient. She had a G-tube a long, long time ago, but her stoma has sealed itself (still, she puts a waterproof seal over it just to make sure that waterborne infections don't settle in the stoma tunnel). I don't think you could dive with a feeding tube, though I haven't encountered this question before. We do have a GI doc here who does diving medicals, I'll try to ask him. I know that I haven't been able to even go swim while I had my G-tube…

No. 388559

I ran across this site looking for a Dr. House episode of all things lol and found it really worth sharing here..i don't know if it's been posted here, I haven't seen it if it has been.

Well worth looking at.

https://www.google.com/amp/s/amp.theguardian.com/lifeandstyle/2011/feb/26/faking-illness-online-munchausen

No. 388581

>>388535
Thank you! I'll try and check back here periodically, My main concern would be the balloon busting from the pressure.

Sage for personal conversation.

No. 388596

>>388581
I wonder if you deflated the balloon and taped it up well to hold it in place and cover it with a large gauze, then a dressing like tegaderm over the gauze and then an aqua guard (probably wouldn't have to use it) and then wrapped ace bandage around your abdomen snuggly? That along with the suit shouldn't make an issue and there's no balloon or anything to pop with the pressure changes and keep it all dry and it stay in place.

It's a lot but that's what make a wish did with my cousins tube and port and she had no complications with it.

If you try it maybe try a mini dive the first time. All of the things I listed can be purchased online cheaply if you don't already have it and if you happen to be at the hospital for whatever reason they may give it to you if you ask (like IR) and your feeding supply company can send it out with the rest of your supplies if your dr will send them the orders.

Sage for giving off topic(ish) post an off topic (ish) reply lol. I hope you can get back to it!

No. 388603

>>388596
Nope don't deflate the balloon. It's okay to do at home with a gtube, people change their own all the time. But a gj tube ends in a specific place in the small intestine, and you don't want it moving out of place.

No. 388614

>>388386
God I hope it falls apart soon. She is honestly the worst (at least here in the us, the U.K.'s got Chloe and Nicole)

No. 388620

Can someone with knowledge explain to me what "not tolerating my feeds" means? I don't understand why Jaquie can run her feeding tube if she's not tolerating her feeds?

Is it anything like an infant not tolerating feeds–projectile vomiting, acid reflux, bloody stool…?

Except for reflux or minor issues, a baby's milk (formula or a mom's diet for breast milk) would need to be changed right away and not weeks and weeks later.

What am I missing?

No. 388627

>>388073
Y'all are making me want to watch Big Brother, something I haven't done since the first season.

Regarding #24, healing a broken hand with a plastic bag…you know the producers are loving this gold. Who could script this crap?

No. 388628

>>388620
She claims they make her too bloated and nauseous, and give her diarrhea. But she's able to eat enough to gain weight, so she can't be that nauseous. They had her up to at least twice the rate she's put herself at recently in the hospital, there's no reason she would suddenly not be able to tolerate them. Some people get vomiting with j feeds, but they also can't tolerate eating at all. Some people get intestinal discomfort as well, but if you really need the feeds, it's worth it and a better alternative than tpn (which I do not understand jaquie being put on at all, even for only a day. It's very risky and expensive, and is truly the very last resort for people who can't eat). She's mostly suffering from attention whore syndrome compounded by stuffing her face with shit. The rate she on, 25 ml, is less than a lot of babies are given. She most likely tolerates it just fine, given that her digestive system functions normally. She just always has to be more sick.

No. 388630

>>388628
Is is possible she's aiming for something higher? Maybe a pacemaker? You know Jaquie always has to be the sickest. After all that'd make her have the "most sooper severe GP".

No. 388632

>>388628
In today's video (I think), she had a sandwich with french fries. She says she only ate a quarter of the sandwich, but she had a big blob of ketchup on the plate, so I'm assuming she ate some fries, too.

I'm having trouble understanding the need for the tube, but it seems everyone else is, too.

I remember the day of TPN…that was right around when I started watching. She seemed so sick but then she went from TPN to meals to a sandwich literally one day after she started her tube feeds, which gave me a lot of pause.
https://youtu.be/uf1GdHKSrAI

No. 388633

>>388620

It means she is trying to move on to new shiny medical accessory
To obsess and munch out on.
On top of her adequate oral intake, refusal and noncompliance with tube feeds, and her little golden banana bags she does there is absolutely no reason she should even have a feeding tube (but thanks to daddies money)
No indicator she needs any further action.

Has she ever posted her test results?

No. 388636

>>388632
So wait.. she had a sandwhich and fries… yet she can't tolerate her fucking tube feeds? I am supposed to believe that she can't tolerate something she doesn't even technically have to digest that's a fucking liquid.. yet… she can orally eat a sandwhich and French fries? I can't even say that out loud it sounds so dumb. Someone needs to show her fucking doctor her vlogs and they'd rip the tube right out of her, no anesthetic, no surgery needed lol.

No. 388638

>>387814
I am so confused. What is wrong with Sophie?

This has probably been covered, but in August, she could not eat anything. On some days, she could tolerate only a few sips of water. She finally saw her doctor, who later called her boyfriend and suggested she find a new surgery. The doc did not fill any of her scripts, leaving her in pain and in need of her "trusty morphine," of course.

But, interestingly, after that, she never mentions not being able to eat again.

So. I'm so confused. What is wrong with her?

What I'm really asking is what is wrong with me? How can I possibly let this take up brain space?

No. 388639

>>388636
Yes, this is my confusion, too. She can eat this ham panini (at 6:52 in the video if you want to avoid all the blah blah blah about giving Harlow the day off), but can't tolerate liquid feeding that bypasses her stomach:
https://youtu.be/m4wpioFAIJA

Her "service human" mother was nice enough to take her to brunch. I agree with the person who said they detest the phrase "service human."

No. 388646

I had seen mytitus2journey and her daughters here. Wow. Can anyone explain all that to me. Are her daughters fine and the mom is just making them think they are sick. I find it hard to believe both the daughters have so many problems.

No. 388651

tempted to make a fake spoonie account and just make up a bunch of diseases and parody the munchie, I mean spoonie, community. That'd be too mean, though, probably.

No. 388661

>>388651
And highly attention seeking lol but I guess that would be part of the parody

the munchies do a pretty good job on mocking real people with real illnesses..so it's sort of already a parody

No. 388667

>>388630
Yeah, a gastric pacemaker seems like something she'd love to get, or maybe TPN. Honestly, if you're going to pretend you can't eat to the point of needing a GJ tube, be consistent and don't film yourself eating whatever you want

No. 388668

>>388661
If anything I want to make a fake YouTube account and join in in calling out jaquie's bullshit

No. 388690

>>388627
This season is probably the worst, in terms of gameplay and people actually trying to win. Fantastic, in terms of crazy people and drama.

No. 388691

>>387953

I will totally WK Elizabeth as I am a friend and know the severity of her illnesses. She has had severe crohns since she was a kid and has juvenile RA, and gastroparesis. She has such severe stretch marks from being on and off such high dose of steroids for so many years. And to the idiot that posted the picture and then questioned how she can malnourished, you can be obese and still be malnourished. She has lost upwards of 30 pounds in the past month and a half. She is definitely not OTT or MBI . And fuck if she wants to go out and have a drink. She has spent the better part of the last 3 months in the hospital …id want to slam a shot or two comforter about that shit, too. Just because you have GP or crohns doesn't mean you can't ever eat x,y,or z ever again. You just are going to do it knowing you will pay the consequences. And sometimes acting like a normal 21 year old is worth the suffering for a week after.

No. 388701

>>388353
We talked about here being defensive before, but OMG, this vid. First she tells us that service dogs love their work (just in case someone would think service dogs are being abused). Then she tells us she is giving H the day off (just in case someone will think SHE is abusing/overworking hers). Then she goes on that H doesn't have seperation anxiety (just in case someone will pity the dog for being home alone). And then she also tells us that she is leaving out a few of her SAFE toys (just in case someone will think H is in danger by playing alone). Wow. It must be exhausting living like that. Thinking you have to explain every single of your actions.


>>388353
I'm not trying to WK, but she said she was off them during the period where she was getting dressed. That doesn't sound too outlandish. TBH, I do that too. (But then I up the feeds for the rest of the day as I know I am on them 23/7 instead of 24/7. Somehow I think J doesn't do that.)

>>388620
I think she claims diarrhea? I'm not sure. It's not abnormal to have cramps and diarrhea when you first start continuous feeds. They can come back or get worse everytime you up your feeds (at least, they did for me). But most of the time, as your body gets used to them, it settles down a bit. May take a few weeks or even months. Not very nice, but if you're on feeds than your body needs the nutrition and heating pads are cheap.

And yeah, sometimes another type of feeds will help. But when you switch to one of the many widely available formulas instead of going to a Very Special one, that switch takes a few days at the most. I don't get why she hasn't tried ANY of the other 'regular' formulas before jumping to a 'special' one. And I certainly don't get her dietitian and GI signing off on it. I can understand someone trying something like that after they tried 8+ of the regular formulas, but not this.

No. 388705

>>388651

Do eeeet.

No. 388706

>>388705
i'd follow the shit out of it, and then watch as people copy the obvious bullshit symptoms

No. 388708

>>388691

If you're on immunosuppressants, as people with Crohns are wont to do, you do not, I repeat, NOT, drink. End of fucking exercise. Doesn't matter how much your mental health needs it. It will very reliably kill your liver, thereby reducing how much nasty immunosuppressive shit we can stuff into you, thereby reducing the maximum disease control we can provide conservatively (i.e. without surgery), and frankly, most surgery for Crohns is not as effective as immunosuppressants - the disease invariably tends to recur around the anastomosis.

Or, you know, drink and ruin your liver and blame us for not being able to control your disease better.

No. 388709

>>388667

I think she's going for TPN. GNS is only considered before going to J-feeds - since it bypasses the stomach, not tolerating J-feeds indicates CIPO as well as GP, and the GNS does not affect that at all.

No. 388710

>>388638

Nonspecific abdominal pain aka 'why the fuck did anyone give this fucker morphine in the first place'? Especially given the massive psychiatric comorbidity shop that she keeps.

No. 388711

>>388709
That'd be my bet. She already has a port, so in her mind, TPN might not be a very big deal. Although I saw her comment underneath a YT vid once when someone asked her why she wasn't on TPN (as if anyone would consider that before trying tube feeds?) and she KNOWS it's hard on the liver.

No. 388715

>>388691

She may be sick but drinking is fucking stupid. People should be called out on doing things like that. A real friend would be honest and tell her how dangerous it is.

No. 388725

>>388711
Jaquie wants whatever the sickest people have. She's never satisfied with having one illness, she has to have a whole list. And nothing run of the mill, she has to be special. A normal feeding tube wasn't enough, she demanded a button. But the worst GP patients are on TPN, so she's now too sick for her tube.

No. 388727

>>388715
"I'm not gonna wk by oh here i am doing it anyways" kek. Why do spoonies always have someone ready to rush in and defend whatever they're doing?

No. 388728

>>387954
malnutrition has fuck all to do with weight, sure it's more common to be skin and bone when malnourished but it can occur at ANY weight as it's to do with levels of nutrition, not body fat.

No. 388745

Talks about losing a fairly high amount of weight in a few days, say 15lbs but gets shitty when it's pointed out that actually, if you're very overweight, it's not such a big deal.

Yah, you can be genuinely sick but don't show off about weight loss when it's not such a sooper serious deal. 15lbs when you're 170lbs ain't gonna kill ya, much more worrying if you're already 90.

No. 388798

J's moving on to mito again, and it's truly cringeworthy.

"I have one issue, and it's the genetic mutation. That's where all my issues come from."

Extreme fatigue and exhaustion couldn't be farther from the shit her videos show her doing. She's also claiming that CoQ10 fixed many of her ailments (not sure if that could be accurate for an actually sick person). I could hardly stand listening to her disgusting spiel.

No. 388800

>>388798
Screenshot? Link?

No. 388805

>>388800
Not that anon, but here goes.

I really don't know enoug about mitochondrial diseases or genetics to know if what she is saying is making sense or not. Anyone that does know and can explain some?

No. 388806

>>388798
I guess she's finally realizing that people know she doesn't have eds or GP

No. 388807

>>388798 apparently only 2 people in the world have her mutation of mito. yea right ! shes only just recently jumped on mito , after claiming eds caused it all for years

No. 388811

>>388807
Has she said what gene(s) are affected? If not, that's an easy way to know she's lying. Plus, people who want the rarest of rare diseases don't get them. She's not sick other than anxiety and an eating disorder, but that's not special enough for her

No. 388813

>>388807
Honestly, I'm just happy she's maybe getting off the eds etc. bandwagon as it makes people who actually have eds/pots/mcas/GP look bad by association

No. 388818

>>388813
Sorry anon, but as far as I know, she claims to have BOTH.

No. 388823

>>388818
Pretty sure she has a better chance of dying by getting hit by a meteorite specifically from the northern hemisphere of mars

No. 388834

>>388811
No she has not said what genes are affected although she has claimed to both have seen a geneticist AND taken one of those genetic sequencing tests. Which would have shown this most definitely. She talks about it in her posts when she was seeing the geneticist. Let me see if I can pull up some screen shots.

No. 388842

>>388811
I don't think so. She just said the geneticist 'unraveled' her DNA (blood test and a skin biopsy, if I remember correctly) and they found a heterozygous mutation in her mitochondrial DNA. That was the rare part: that mutation is known, but normally it's homozygous.

So ok, anyone actually KNOW about this stuff? I mean, we all know that Jaquie is OTT and at the very least does not have good coping strategies. And I know enough about EDS to see that she might have some mild hypermobility, but true EDS is unlikely. I can however believe that a doctor told her she has it.

But I don't know anything about mito. So I wonder: how do we KNOW she is bullshitting? I mean, of course, rare mutations are - by definition - rare. And NO ONE has so many diseases as she has, at least: not if they're unrelated. But how do we know this one isn't real? Obviously, there are people out there with rare mutation. Couldn't she be one of them? I'm not trying to WK, I just want to be able to sift out the truth from the BS.

No. 388866

>>388842
Most harmful DNA mutations are homozygous, not heterozygous. They tend to be recessive traits, because dominant harmful mutations don't allow an organism to live long enough to reproduce. Homozygous dominate would be mutation/disease free, heterozygous would be disease-free but carriers of the trait, and homozygous recessive would have disease effects. Heterozygous are spared the effects of the mutation because their second allel is dominant and not mutated, and it "covers up" the harmful allel. So jaquie is just bullshitting, about the mito and the eds.

No. 388872

>>388866
Unless it's one of the 15% of mito cases that only involve mitochondrial DNA, in which case it wouldn't be heritary as her mother is fine

No. 388877

Same anon as >>388842

Went back to check on my typing, saw I typed it the other way round. J's mutation is homozygous, THAT was the rare part.

No. 388882

>>388877
Yeah that's how many genetic diseases come up. But the issue is that her symptoms are not typical of mito, especially since most are diagnosed in early childhood, and many are fatal.

No. 388884

>>388882
So is it possible she one? Yes. But is it probable? Oh hell no. She's just a lazy attention whore who's figured a way to live life the easy way and be taken care of while thousands of people on the internet give her attention. Until we see the actual copy of her DNA testing report identifying said mutation, I'm still calling bullshit

No. 388890

>>388884
Is it also possible that they DID find some sort of mutation, but that it's completely (or mostly) incidental?

No. 388892

Judd seems super uncomfortable to be home and that embrace was beyond awkward. They hugged like friends, at best. And Judd and Harlow seem happier to see each other than Judd seems to see Jaquie. Notice Jaquie had to film her reaction because ultimately Judd coming home is about HER.

No. 388897

>>388884
She has no hearing or vision problems, she can eat, she can walk (her only mobility issue is laziness), she can talk, she hasn't had severe muscle weakness, and she was fine until she "developed " pots a few years ago. It just doesn't make a lot of sense to me, but I'm sure less people question that as mito illnesses are less well known

No. 388900

>>388890
Definitely possible. Most DNA mutations are harmless, and everyone has them. Otherwise you wouldn't have been born (spontaneous abortions are often the result of gene mutations).

No. 388902

>>388897
But what ARE the symptoms? I read up on it a bit, and it seems like me that it can just about produce any symptom, anywhere.

No. 388903

>>388897
Considering that her fan base seems to be primarily made up of either 14yos or other munchies I doubt she gets questioned much at all. Clearly - for whatever reason - her family enables the shit out of her.

No. 388905

>>388900
It's just that the vast majority of us aren't willing to pay for DNA testing (in the us insurance usually doesn't cover it, and it's several thousand dollars)

No. 388907

>>388900
So here mutation being homozygous instead of heterozygous seems to suggest the mutation wouldn't have any effects that are too harmful?

No. 388911

>>388905
Well, that's one of the problems this munchies have, I think. They get tested so much, they're bound to find some anomalies.

No. 388912

>>388907
No, because she would have either never been born or have already gotten sick as a child, unless it's some rare type that has an adult-onset, but her "symptoms" don't fit those kinds (at least the ones I was able to find and read about)

No. 388916

>>388911
Must be nice to have an extra couple K's lying around to have your genes sequenced

No. 388917

>>388912
Anyone can find health problems if they look hard enough, whether it's fatigue or back pain or headaches or something else. Munchies search out problems, and when the ones they find aren't special enough, they make shit up

No. 388925

There are diseases that can exist with only one allele even if the other one is perfectly fine. Just because you only have one mutated allele doesn't mean you don't have the disease, but your phenotype (read: how symptomatic you are) is going to depend on how catastrophic the mutated allele is and how well the other allele can compensate.

Phenotype is much much more complicated than dominant/recessive. What and where the mutation is plays a lot into the presentation - for example a mutation at the end exon of a gene is usually a more problematic mutation, because the aberrant protein will make it through the body's self-check system, whereas the same mutation further upstream could be non-symptomatic because the body will catch the aberrant protein before it makes it into the body, resulting in full dependence on the other allele for that particular protein.

No. 388960

>>388805

Not a mito expert, but seen both legit and not so legit cases of mito.

One, beware anyone who claims 'mitochondrial disease' without specifying what type. There are known mitochondrial diseases such as MERRF and MNGIE,… and then there is 'mitochondrial dysfunction' which means the patient has some (possibly normal) variability in mitochondrial activity/efficiency, but no clear clinical correlate. Bottom line, this is already starting out sounding like bullshit.

Then we know that some sequencing has happened, but muscle biopsies in mito are not about genetics, they're about looking at stains and at the shape of muscle fibers, specifically looking for 'ragged red fibres'. Did that confirm the mitochondrial dysfunction?

Finally, a lot of her symptoms don't fit into 'real world mito', just 'instagram mito'. She's lived fairly long without any significant symptoms - most mitochondrial disease has some clear signs in childhood. Mito doesnt, or at least not to our current understanding, cause EDS, either. There's something just off there.

Perhaps the most damning point: if her heterozygous mutation is indeed as rare as she claims, how does she or her geneticist know what its effects are? Short of knowing exactly what the particular gene encodes and how that leads to the pathophysiology of a particular mitochondrial dysfunction, this screams bullshit to me.

Bottom line, I think this is her angling for another sooper rare, sooper severe dx.

No. 388962

File: 1505758032431.png (1.22 MB, 1080x1686, 20170918_120357.png)

Oh boy. I was just strolling through the spoonies tag on insta when I stumbled upon this gem.

She says she's in hospice and has just a few weeks to live. She has a gofuckme. But if you go to her early posts ~2014, she was posting about her ED (she tags both AN and Bulimia, so idk which one, but from personal experience I would say it's AN)

1/4

No. 388964

File: 1505758180454.jpg (807.25 KB, 1058x1677, Screenshot_20170918-120043.jpg)

Image from Sep 2014 where she has ed tags

No. 388965

File: 1505758280249.jpg (470.69 KB, 1080x1149, Screenshot_20170918-115941.jpg)

Sep 2015, she looked normal and happy in the photo, but the tags got me. All these issues sprang up in a matter of weeks on her insta with no mention of them before.

No. 388966

File: 1505758460420.jpg (Spoiler Image, 760.03 KB, 1069x1720, Screenshot_20170918-120330.jpg)

2016 (last one, I promise). She looks completely relapsed but presses that the weight loss is caused by her (surprise, surprise) GP. After this post it starts to deteriote into Gofuckme posts and "pity me" posts and what have you. Her latest posts are all about how she's dying soon and everyone should be coming together to support her.

No. 388967

>>388966
fucking put a spoiler over that shit

No. 388969

>>388960
The mutation is HOMOzygous, the confusion is my fault. I thought I typed it right, but I typed it the other way around.

And yeah, that's what I thought first as well: "if that mutation is unknown, how do they know what it means - if anything - in terms of symptoms? But then I thought that she is claiming her mutation is homozygous. And if the mutation is known but it's usually heterozygous, it's very possible they know what it does, just not what it means if a patient has a homo- instead of heterozygous mutation.

If I remember correctly, they did a skin biopsy, not muscle. I can look it up though.

She doesn't claim her mito caused the EDS. I think. In today's vid, she said it caused her epilepsy, cyclic vomiting, migraines and fatigue. And from what google has taught me, it can also cause dysautonomia, autism and low blood suger. And GI symptoms, but I can't find what GI symptoms.

And somehow I don't think she is straigt up lying about this stuff. She may have misunderstood the doctor or may exaggerate the meaning of this mutation, but I do think there was a mutation found.

No. 388976

>>388969
She doesn't have the right symptoms for eds and GP at least. But there's so many people right now claiming eds without a proper diagnosis who maybe have some hypermobility but definitely not full eds.

No. 388978

Anonymous now No. 388977
>>388966
Eating disorder. I'd be surprised if she had anything else going on, except some hypermobility. Anorexia can cause GP and pots symptoms, but having GP doesn't mean you're stuck at that low of a body weight.

No. 388982

>>388966

She claims three weeks to live, but what exactly is "killing her" other than her not eating.

No. 388986

Remember when I said I hate when people ask how to get treatment for something. Same person is bothering me saying "oh I probably have this. I probably have that." and I have no idea how to tell them to shut the fuck up. It's fucking annoying.

No. 388997

>>388986
Just simply say… shut the fuck up mate :) hahaha

No. 388999

>>388982
Well definitely not eating will kill you. And if she's been doing it for long enough she could be suffering from long last/life threatening issues because of it. Like.. basically her organs shutting down.. etc. there comes a point with ED patients where you can't turn back any further and they've fucked their bodies past the point of no return.

No. 389002

>>388962
Why… why did she put a heart next to hospice?Idk, I find it really disturbing…

No. 389006

>>388982
She's been claiming she's dying for ages now.

No. 389007

>>388834
>>388811
>>388842
Regarding EDS..her geneticist and another doc disagree on her EDS diagnosis. The geneticist says no, but the other doctor says "probably," and since it explains so many of her symptoms, she has to have it.

But, if you watch her genetics testing video, she explains her immuno-deficiencies:
https://youtu.be/mUwr6Vz35PQ

The geneticist wants a med student to write her up in a med journal. The immunodeficiency is so rare, it has no name.

No. 389013

>>EDS, hypermobility type may be the most common heritable disorder of connective tissue.

Poor munchies… their precious hEDS is likely the most common HCTD (i.e. not sooper rare and speshul)

SOURCE: https://www.ncbi.nlm.nih.gov/books/NBK1279/?report=reader#!po=26.8707

No. 389029

>>389013
kek, i'm in a couple of EDS groups on facebook and i tell you some of them were furious after the new criteria concluded that hEDS is not rare at all
and still so many talks about their soooper rare hEDS

saged

No. 389039

>>388962
One post says "back in hospice". You don't go in and out of hospice, you're either dying soon or your not.

No. 389044

>>389039
No. You can discharge yourself from hospice if you want treatment at a hospital. Hospice doesn't pay for hospital and hospice services at the same time.

That said, that person is lying about needing hospice anyway.

No. 389048

>>389029
Why should it be rare if everyone and their mother with mild hypermobility gets the diagnosis?!

Guess everyone is going to start angling for other EDS types that have always been, and actually are, rare and refuse to get genetic testing/make a million excuses as to why they can't get it?

No. 389057

>>389048
Except now it's harder to get that diagnosis. Yeah, people were pissed but just the ones that are happy to have eds (morons). The funny thing about eds, true eds, is that you can only treat the symptoms, so there's nothing special about having the label. Joint pain/instability? Whether it's eds or just joint hypermobility, physical therapy is the best treatment. Gi problems? Go to a gi doc. Having eds doesn't make you special, if anything it makes people avoid you and you rack up medical bills real quick (and gofuckmes are not always the answer)

No. 389062

>>389048
i don't doubt that some people suffer from hypermobility syndrome, but i doubt that 95% of the munchies do
it seems to be the new fibromyalgia tbh

No. 389072

>>388960
Give geneticists a little credit.

The type of mutation and its location in the gene tells us a lot. As I said before, you can have the same mutation at different parts of the gene, and while a mutation near the end of the gene can result in a disease state, the same mutation further upstream (at the start of the gene) may result in that gene never producing a disease state because the body ends the process of DNA -> RNA -> protein before it gets to protein.

Now that doesn't mean "all mutations at the start of the gene are harmless and all mutations at the end of a gene are harmful" but it's a good explanation about how a mutation and the location in the gene are both hints at what the mutation does.

We also know what different mutations tend to do. Missense, nonsense, insertions, and duplications, and deletions are all different types of mutations that we have a good understanding of. While it's true that any mutation can also be a frameshift mutations, we can detect these.

Also anon that said genetic mutations cause miscarriages- that is not purely true. Harmless mutations happen all the time, and mutations that cause disease happen all the time. While issues with genetic coding CAN cause a miscarriage, that doesn't mean that all disease causing mutations will result in a miscarriage.

Thank you for attending LolcowU, don't mind me I'm just correcting your bad arguments.

No. 389083

>>389072

Not sure we disagree there, or that there's much that stands corrected. As I said, in most cases, unless we do know the protein and we know what the particular mutation does to it in vivo, the leap from 'mutation in gene coding for <thing> means impairment in <thing>' is a leap that misses several steps. For one, it only covers SNP variations rather than traits of polygenic inheritance, which are regarded to be more frequent. It is also not always clear how these will play out, and which mutations the body will end up being able to compensate for, or which will require a particular feature in the exposome to activate, and so on. Bottom line: plenty of credit to geneticists, but making the leap from 'mutation in locus pertaining to mitochondrial function that has only been seen in two people -> mitochondrial disease' is clinically idiotic.

No. 389089

>>389083
It's absolutely true that not all mutations are harmful. For the most part, legitimate medical genetic testing won't report variations within certain limits that we know generally do not cause disease. I don't know if this particular test was legitimate medical sequencing or 23&me nonsense.

In this particular case- if there are two other documented cases of patients with disease states and they have the same mutation, it wouldn't be good medicine to assume that whatever symptoms are consistent through all three cases are not linked to the mutation.

That doesn't mean all of her symptoms are caused by this mutation. It just means that IF she had legitimate medical genetic screening and IF there are actually two other cases with her mutation that are symptomatic, that the symptoms she has in common with them are likely caused by the mutation.

No. 389091

> if there are two other documented cases of patients with disease states and they have the same mutation, it wouldn't be good medicine to assume that whatever symptoms are consistent through all three cases are not linked to the mutation.

What if the other thousand people who have that mutation, whether tested or not, do not have symptoms? I am pretty sure it would not be great medicine, then again, I do accept geneticists play a different game in epistemological terms.

No. 389094

>>389057
Yeah but everyone who got it prior to the revisions can keep it without getting reevaluated so there's a whole slew of people in lalaland

No. 389104

(don't know who to refer to for tagging)

Aren't there plenty of mutations that have unknown locations with correlated phenotypes? Take classical EDS for example. There are over 110 exons across COL5A1 and COL5A2 that can be mutated, whether null or doubled, and there isn't correlational basis on phenotype from exon to exon, so wouldn't it be hard to decide "oh this person is going to be super symptomatic because they have a mutation on the end of COL5A1 exon 45" in cases where the correlation is not yet found / there really isn't any?

I might have no idea what I'm talking about because genetics is a hobby and not a job, but I'd like to learn if I'm wrong!

No. 389117

>>388905
there are programs that send you a spit test and you send it back with your spit and they will give you the raw DNA. all for free. I know one of them is called "Genes For Good". It takes about 3 months, I believe, but since it's completely free, it's definitely worth it. And there are other programs that will then interpret your raw data, as well!!!

No. 389132

>>389104
>>389091

In order to have a diagnosis you have to have both the genetic results and clinical symptoms that make sense based on the mutation that are not otherwise explained by non-genetic causes.

If we have a person presenting with symptoms like joint instability, tissue frailty, fractures, or valve issues, a mutation in the collagen gene being a cause of these problems would make sense. We know enough to know what collagenous disorders and subtypes of those disorders tend to occur with certain mutations in certain diseases.

Now, what if there are hundreds of people with the same mutation with no symptoms?

If there is a mutation but no clinical symptoms, there can't be a diagnosis. A great example of this is how we don't diagnose people who have a BRCA mutation known to increase the risk of cancer with cancer. They don't have cancer, but they may want to make certain decisions knowing that they have a major risk factor. Another example: If a person with no history of bleeding problems has a mutation in the F8 or F9 gene, then we will not diagnose hemophilia.

We also need to keep in mind that the exact same mutation in two different people may produce different symptoms. This is because genes are part of a system of code and are not isolated entities. Someone who has an EDS mutation but also has genetic coding that makes them put on muscle very easily will have fewer problems with joint laxity than someone who does not have that coding.

In the case of rare mutation, it's usually "mutation normally causing x, but in a weird spot relative to the rest of the mutations that normally cause x" rather than "super special mutation literally no one has ever had".

"But how do we know a munchie isn't faking symptoms that just so happen to correlate with a mutation they find in genetic testing and get misdiagnosed?" I hear you ask. Great question.

If the patient has legitimate medical genetic screening, asymptomatic mutations are unlikely to come up in the results. The databases that the tests reference typically have thousands of asymptomatic variants for reference. We don't have "THE Code for COL5a2", we have "thousands (sometimes millions) of normal and asymptomatic variants of COL5a2".

Tl;dr: we compare the genes to all sorts of normal ones before diagnosing something as a mutations, and the symptoms have to make sense.

Saged because LolcowU

No. 389133

>>389117

What are these tools and why would anyone not trained in bioinformatics feel qualified to interpret their output? I am skeptical.

No. 389134

>>389117

Also good lord have y'all never watched the X Files.

No. 389144

>>389132
That wasn't really what I was asking, but thanks! Still good info.

And, unfortunately for munchies, you can have a clinical diagnosis without genetic confirmation in EDS (at least for cEDS). The genetic testing can only confirm, not deny the presence of EDS. Hopefully that will change as more and more is known about it.

No. 389154

>>389144
I thought that all types except hypermobility were diagnosed by gene testing? I know that there's no test for hEDS, so it has to be a clinical diagnosis based on the new criteria. But I'm not a doctor or geneticist. All I know is that both EDS and mito are "invisible" illnesses (and chronic Lyme too), so they're enticing for munchies, get a wheelchair and some braces and ta da! you look sick

No. 389157

>>389133

As someone trained in bioinformatics (my undergrad and masters were in GWASs), I'd be extremely wary of most of these programmes. Saying this as one of the lucky guys who did get their genome sequenced for free (perks of having a rare cancer and surviving better than most patients do).

One, TANSTAAFL. Sequencing has gotten cheaper, but it's far from cheap, especially comprehensive sequencing rather than single polymorphisms. So someone has to pay for it, and usually, that's because your sequence will then be available for research… or so you'd hope. In the worst case, these may be identified back to you and your risk would then be known to e.g. insurers, who would charge you a premium that considers your risks. At the moment, this is not legal, but there is no reason why it may not happen, overtly or covertly, someday. I am not saying this is happening, but it may happen someday, and information is forever. Few of these programmes give you full or even comprehensive control over your data.

The other thing is more a matter of principle. Genes for Good is something called a GWAS - a genome wide association study. The idea is simple. Take a detailed health questionnaire, then sequence the subjects' DNA, finally use machine learning algorithms to identify which mutations have the strongest predictive value for particular conditions. A lot of interesting stuff has been found this way, but there is a degree of consensus that this is largely an enormously wasteful way to do genetic research. It's literally the genetics equivalent of Mr. Micawber, waiting for something to turn up. It's lazy science, and worst of all, it's not always all that reliable. For one, a random search doesn't tell us a lot about why a particular association exists, which makes it extremely difficult to usefully leverage it.

Perhaps one of the most significant things to come out of a GWAS illustrates this. It happens to have a little personal relevance, too, so sorry for the blogging. My wife is one of a very small number of people who have a faulty gene that means they express a faulty version of the protein PCSK9. To cut a very long story short: PCSK9 plays a role in regulating lipoproteins, in particular, LDL aka 'bad cholesterol'. PCSK9 knockouts, that is, people who have a malfunctioning PCSK9 protein, have a drastically reduced heart disease risk. My wife could gorge herself on butter all day and she'd have a lower cholesterol level than I do, the lucky bugger.

Now clearly, given that cardiovascular illness is a major killer in the Western world, PCSK9 became a very attractive drug target. Bizarrely, however, it failed every single time. The bottom line: GWASs can lead researchers down an expensive wild goose chase. It looks like an appealing target and you WANT it to work so much, you're going to ignore that you don't know why it should, or why it wouldn't. As such, it is a legitimate ethical question whether one should join in a project that basically wastes a shitload of research money for the sole reason that it is easier to explain than doing from-the-ground-up basic research.


(For a good descrpitoin of the PCSK9 story: http://blogs.sciencemag.org/pipeline/archives/2017/03/17/pcsk9-real-world-data-arrives-unfortunately )

No. 389162

>>389154
some people can't afford genetic testing in the US and if the symptoms are severe enough and can be seen on tests such as MRIs or other studies a geneticist might, in very limited situations, give an EDS diagnosis. i know someone who got their marfan diagnosis because of her physical appearance and because she had an aortic dissection at 20. that was enough for her doctor (after years of holding off) to give her a clinical diagnosis until her family can afford genetic testing.

No. 389164

>>389132

> If the patient has legitimate medical genetic screening, asymptomatic mutations are unlikely to come up in the results. The databases that the tests reference typically have thousands of asymptomatic variants for reference. We don't have "THE Code for COL5a2", we have "thousands (sometimes millions) of normal and asymptomatic variants of COL5a2".


Then there's a scenario that I don't think you have considered. This is true for all kinds of testing, really, where there is the possibility of an asymptomatic, benign positive.

Say the patient has felt like she had lax joints and soft skin and all that. Now, this could be EDS, it could be anything else, and it could also be, to a degree, natural variability. However, once she learns that she has a mutation, she may interpret everything she experiences with that in her head, and convince herself she has a severe issue. Sometimes, we see this with GESs: patient gets sent for GES with minor complaints or even no complaints at all (people on long term high dose opioids complaining of constipation used to be sent for routine GESs at some point, this is no longer accepted practice, thank God), gets a low positive result, suddenly starts to experience the symptoms she feels she ought to experience with a positive GES: N+V, reflux, regurgitation, loss of appetite etc. And this doesn't even have to be entirely intentional.

Ultimately, as the number of tests performed on any randomly selected person converge to infinity, the likelihood of at least one positive that they can latch on to and obsess over converges to 1. I'm not sure we won't think of this eagerness to let the genetics results drown out the clinical picture rather than interpreting the genetics results on the basis of the clinical picture (and if it's the latter that has predominated in your professional experience, I apologize - you must be much more fortunate than I was!) as similar to the mercifully short era during which full body MRIs 'just to be sure' were common. I personally know two people who had surgeries on asymptomatic incidentalomas detected on a full body MRI who were in good health and have suffered serious long term harm to their health due to the intervention rather than the original tumour. From what I gather (not my field, but have plenty of patients with it on their medical records) about EDS diagnostics, even for the types that do have a known locus, I see patients being given a weird diagnosis - the genetic markers confirm that they do have a mutation, but there is absolutely no information on what that means. How often are those mutations asymptomatic? Is that particular mutation associated with a worse or better outcome? The human mental tendency is to use known facts to explain the unknown, and given the wide range of symptoms EDS can cause, patients can drown in this sea of symptoms that they would not have regarded as significant at all until they knew that it had a cause and a name. I am not sure we are doing no harm here. Thankfully, that's not for me to decide though.

No. 389165

>>389133

Analogy: they're like the haplotype->ethnic origin mapping tools. They have a kernel of truth and scientifically accurate information buried in a sea of oversimplification and spurious correlations.

No. 389166

>>389157
>>389154
>>389133
I can imagine that it could be a good starting point. Especially if you're a closed adoption of an irresponsible 16 year old who had health issues but didn't care enough to get them checked. It of course wouldn't be reliably correct, but a person who works w/ adopted kids having trouble with knowing nothing about their mother and father's health, or any other things they didn't know about at the time of birth.
I'd also think (but am not sure) that a geneticist may be able to look at the part of the report that points to the specific gene mutation and say if it really means X mutated gene, since it's not someone's whole dna, and just a specific code they are/are not looking for. But like I said, I am not sure of that. And of course, there's no proof (unless you get your genes tested by an actual reliable company like the ones geneticists use) that they (G4G or other free services) gave you correct information in your raw data report. But, yeah. It is pretty sketchy. Hopefully the FBI or CIA don't have my DNA. That'd suck
>>389134 no i haven't but I assume aliens must've stole someone's DNA and sold it to Busch Sr. for a some cash and now Bush Sr. has the ability to clone that person and frame them for murder but Cuddy saves the day with her nice hair? (idek if Cuddy is the actual name)

No. 389167

>>389162
HEDS here. Insurance won't pay for genetic testing as there's no test for it, and no one has multiple forms. Diagnosed clinically based on symptoms, skin/other testing, and family history (mom and aunt, probably more but everyone else on that side is dead). Insurance in the us is a bitch, but jaquie has money, so she gets what she wants.

No. 389170

>>389166
Jacquie throws around "mutation" like it's instant death. Anyone who's eyes aren't brown are the result of a mutation thousands of years ago, but yet blue or green eyes aren't a death sentence. The variety of life on earth is because of mutations as well. Unless jacquie says exactly what her mutation is, we'll never know if she's telling the truth (not likely) or lying (much more likely). Of course that says nothing about how or if she's affected by it.

No. 389172

>>389166

I was a closed adoption and I only learned of it when seriously ill with B cell lymphoma. Having my genome sequenced didn't give me much to go with, frankly. It had no risk factors for what I did end up getting and lots of risk factors for diseases I have, so far, knock on wood, managed to dodge. After recovering, I had to sit out a year, which I spent trying to track down my birth parents. I never found them, so I guess I'll contain to be a mystery to myself. I definitely can understand why in that situation sequencing for a few important and well understood risk factors like BRCA1 would be sensible. Whether an all around sequencing for everything we can think of would be equally sensible is a different question.

No. 389173

>>389154
Apparently, 10-50 percent of classical EDS are not caught on gene testing. Before the new hypermobile EDS criteria came out, it was estimated only 50% of cEDS patients had a detectable gene mutation. Now it's estimated that 90% of cEDS has a know gene. But I don't trust those statistics much, as they're from EDS society, and it's also pretty hard to tell, since a lot of people can't get the HTCD panel.
I believe hEDS probably is a mix of multiple mutations, but I'm not really scientific. At all. So that's just me having a probably uneducated, but possible thoery

No. 389174

>>389170

Indeed. In many cases, the exposome can be as important as the genome, and frankly, looking at her, her exposome consists of stuffing her ever fattening face with greasy shit. Unless you're my wife (see post above), I am pretty sure that can kill you deader than most mutations.

No. 389178

I'm not super educated into this whole mutation shit.. and genome.. sequencing etc ect like some of you seem to be. However, I'm just going to throw it out there that anyone that I've known with a mito disease was seriously seriously ill to the point of dying or actually did die. And most of them knew since birth or, found out into early adolescence.

No. 389184

>>389164
This is when the art of practicing medicine comes in.

A patient may feel she has velvety skin and lax joints. The job of any doctor is to determine that they in fact have velvety skin and lax joints? Thankfully there are non invasive, low risk tests to check for lax joints in the office. Testing for velvety skin is easy. Touch it. Does it actually feel like the velvety skin characteristic of some forms of EDS or do they just use some really amazing hand creme?

You don't become a clinical geneticist without years of intense training. By the time you are there, you are qualified and experienced enough to assess potential symptoms in the office.

As for people extrapolating "oh, this must be caused by my mutation" - again, a good doctor can work with this. Educate the patient on what symptoms fall into the typical scope of their syndrome, and most importantly what symptoms should concern them.

If a patient came to me saying "my skin turned blue, is this EDS?" I would say "no, but you might want to stop drinking colloidal silver".

If a patient came to me saying "I'm having palpitations, is this the EDS", I would say "it may or may not be, but we will do an echo and a 24 hour monitor to make sure you are okay".

If a patient came to me saying "I'm so exhausted, I sleep all the time, I can't focus on anything, sometimes I can't deal with this and I just don't know why I even exist. Is this EDS?", I would say "That must be awful. It sounds like you're depressed which is not causes by EDS, but it's very normal for people dealing with any kind of stress or even just living north of the equator. We're going to do some bloodwork to check for some other causes of depression, but no matter what the cause of the depression is, my patients tend to do better with a therapist for support."

…and then you refer them to a therapist, because when a patient reports depression or anything else outside your scope you get them qualified help.

Imaginomas happen. False positives and negatives happen. Medical testing is imperfect. This isn't news. It is still far more likely that a positive diagnosis is in fact positive than someone has munched up some symptoms that just so happen to line up with a mutation they had no way of knowing they had that are also clinically evident.

Munchausen is absolutely a thing. Someone can have a legitimate genetic disorder and have munchausen.

But really? Trying to undermine the legitimacy of medical genetics just because someone who clearly has some mental issues got diagnosed with something real that may explain some -but not all- of her symptoms and you don't like that?

Could you not? Geneticists don't cause munchausen. If anything, we are a tool to get those patients into the care they actually need.

No. 389185

>>389178

In general, cases of mitochondrial disease with childhood or early childhood onset do tend to be worse and more likely to be fatal. We had a few patients with MNGIE, which unlike most mitochondrial diseases can be objectively diagnosed. Horrific illness - I'd rather have cancer again, thanks. Few of the severe MNGIE cases live past 20. That's why it pisses me off that mito has become this catch all Munchie diagnosis.

No. 389186

>>389184

Are you a medical geneticist? I get the feeling you are, and you feel personally offended. Please don't. Medical genetics is a 100% valid speciality, and if anything, my comments should underline just how valuable a good medical geneticist is, rather than malign them as a lot. Sorry if that's how it came across.

No. 389192

>>389186
No, I'm the person who takes the raw genetic data for medical tests and makes sense of it for the clinical geneticist. The clinical data is part of the report we generate and part of what makes the determination between a weird but probably normal mutation and one just a little bit weird but definitely pathogenic. We will sometimes suggest clinical tests if we are trying to make that determination but need more data. I also volunteer as a patient advocate and I've seen what a good doctor can do and how fucked up patients with a doctor that doesn't do [all that shit in my last post] can get. I've also worked with a number of malingerers and people who probably have munchausen.

I do have a pet peeve with people who think genetics can be reduced to a Punnett square and people who think they can interperet genetic data but don't know an intron from an exon. Combine that with (what sounded like) questioning the validity of my entire field because someone with Issues found a possible answer to like 3 of her problems and you've basically smacked my pet peeve with a baseball bat.

But also I like launching into bricks of text about what I do because you can imagine this isn't good dinner party conversation and good god do I like to educate people. So I'll call it a draw :)

No. 389194

>>389192
I did a spit kit from Genes for Good. Am waiting for the results. Question, what is a good program/site to run the raw genetic data through once everything's processed?

No. 389197

>>389192

Sounds like a cool job, dinner party conversation or not. Thanks for explaining and no hard feelings, I hope. Didn't mean to smack your pet peeve.

Sage for unduly positive tone.

No. 389202

>>389194
Are you getting the raw data as a fastA, fastQ, SAM, or BAM? Was it sequenced by illumina, shotgun, or PCR? Is your data divided into contigs?

No. 389203

File: 1505784597197.png (64.21 KB, 893x539, jaquiecap2.png)


No. 389206

>>389203
Hahahahaha get em

No. 389209

>>389203

Omg this is too funny

No. 389211

>>389203

I think I missed the health aide part. They were talking about getting one, but did they seriously go through with it? That is absolutely ridiculous, chronic laziness does not need further enabling.

No. 389213

File: 1505786477838.png (2.22 MB, 1536x2048, IMG_7484.PNG)

>>389203
So malnourished. Can't function. Losing too much weight. But look how happy for a custom wheelchair! So blessed everyone enables my laziness and irresponsibility while I stuff my face with crap

No. 389214

File: 1505786744738.png (3.2 MB, 1536x2048, IMG_7485.PNG)

>>389213
The sad part is that she used to look pretty, when she actually put effort into her appearance, and hadn't blown up like a rotting whale carcass

No. 389236

>>389213
What is up with that STUPID agape mouth in every fucking photo???? I'm sorry but she looks so fucking ugly making that goddamn face

No. 389237

>>389214
FOr some reason i cannot stop looking at her eyes. they're almost red, but she does look a lot better in this picture.
I think the whole laziness when it comes to dress and all that is because she thinks she'll look more sick. Instead she just looks like she's like a lazy bratty teenager who sits around the house all day eating pizza and ordering people around.

No. 389238

I found this and the other munchie threads after someone made a random comment on the EDS reddit that Jacquie isn't all that she appears to be. I've been going back and looking at things since, and all the articles from when Harlow got her on TV say she started training service dogs when she was 15 and started getting cataplexy. It means her whole adult life has been constructed around being sick. I think she probably does have some issues, but consciously or not has found that the only way to prop up her identity is with escalating medical issues. I went back and watched her first vlog (or "vee-log", as she called it) and she was so much more animated and normal than she is these days - until she started explaining her "illnesses", and then the monotone over-explanation began. Sidenote - amazing how her anaphylaxis/angiodema has seemingly disappeared in recent months in favour of GI issues.

No. 389239

>>389236
idgaf about her mouth. shes doing that fucking thumbs up thing, just like every other pic of her. it bothers me to no end. Why does she do that so much?? Can she stop with it

No. 389245

>>389239
Can she literally just stop with ALL OF IT??? Lol. Everything she does drives me insane.

No. 389272

>>389029
Most were more annoyed that they no longer meet all the criteria for hEDS.

No. 389278

This piece of satire is a perfect example of how ridiculous all the munchies sound as they act like this all the time without being satirical

No. 389300

>>389278

Are you sure that's satire?

No. 389311

>>389184
As a loyal student of lolcowU, I thank you. And also the GIfag from the UK, who has also taught me a lot.

So what are you saying about this specific case? Have you seen her vids on this subject? One of them is here https://www.youtube.com/watch?v=mUwr6Vz35PQ (start at the 7 minute mark (ish)). Where she says the mutation that was found is not ver known, but it is known to cause a immunological problems. If I understand it correctly, she has TWO very rare mutations? The one she talks about here, and the homozygous mutation on her mitochondrial DNA.

Also this one: https://www.youtube.com/watch?v=tTdpc8eAbyo (beginning at 3.30).



My take on it is this: Jaquie has some legitimate issues, one of them being an immunodysfunction that causes her angioedema attacks. Her insurance approved IVIG, and I don't think they would do that if there wasn't a REAL problem found. (Although, what I don't understand is how she never talks about infections. If she is so immunodeficient, wouldn't that be one of her main problems?)

Also, her epilepsy and narcolepsy very probably are real. First of all, these diagnoses are pretty specific and - if done right - near impossible to fake. Secondly, these are the disorders that actually got better with treatment. As one would expect.

On top of this, she has somehow developed coping strategies that are quite detrimental. She focuses too much on her many diseases and she has build her entire persona around being sick. She is so afraid that people will question the legitimacy of her problems, that she explains them religiously and in detail. I agree with this anon >>389238 that she changed a lot during the period she is vlogging. I think being an illness vlogger is damaging to her, but I don't know what kind of a person she was before it.

I also think she has some factitious behaviours and is too eager to agree to certain medical procedures and/or pushes her doctors for it (the feeding tube).

I can believe that some of her pain problems are caused by hypermobility particularly in her neck (although stress and bad posture can also be a major factor) but I don't think she has EDS. She may or may not have an eating disorder. I'm sure she could at the very least manage a liquid diet or in whatever way get enough calories orally without a feeding tube. What she is saying about gaining/loosing, malnutrition etc. does not make any sense.

As to her POTS and Mito: I'm really not sure. If a geneticist made the dx of mito, I'm inclined to think it is real. But as I said before, I do not know enough about it. For POTS: I really don't know enough about it. I do know that she was afraid what her doctors at Mayo would say about her port, because they didn't think port placement for IV saline therapy for POTS was a good idea. So it's clear she doctor shopped at least a little to have that done. She may have POTS, but the way she presents it doesn't always make sense.


Saged for non-contributing. And sorry for the long post. Feel free to input your own thoughts or dispute any of mine, I'm just trying to make sense of it.

No. 389313

>>389236

My hunch is that she's going for some neurological dx which is often accompanied by dysarthria and dyskinesias of the facial muscles. Or something, not a speech therapist but I've seen this in patients with MS and TBIs.

No. 389315

>>389311

Hmmmm. Angioedema attacks would normally involve the C1 esterase pathway, so IVIG would not necessarily be effective, there are specific treatments for it and a specific dx (HAE). IVIG for angioedema sounds odd to me. It definitely is not an accepted practice over here, but may be different in the US. It might well be her doctor is of the 'let's throw IVIG at everyone and see what sticks' party, which is unfortunately gaining traction. Immune dysfunctions involving angioedema don't necessarily have an immunodeficiency part, but that's a complex story.

I doubt the narcolepsy dx, but not an expert. I definitely doubt whether her seizures are all or even predominantly not psychogenic.

Ps. Epilepsy does not get better with treatment, it merely is suppressed by treatment.

No. 389326

>>389313

Speech therapist here. I don't follow her closely (other than whats posted here) and originally I thought that her seemingly emotionless face (and monotone voice) could be part of the autism she claims. However, having now seen some before pictures (and also questioning the autism dx) I am starting to think that its more likely medication related (does she take a ton of medication) - she looks like someone who is kind of "stoned" on meds.

There are many types of dysarthria (although despite learning about them all in class - you only every diagnose dysarthria). The mouth hanging open would be part of the one that is probably the easiest to fake but would not be the most common (and would likely not accompany dyskinesia). I assume that she is on a bunch of medication - which most slps would attribute as the cause of any dysarthria/dyskinesia before suggesting it could be neurological. I know it has been focused on here but I haven't heard anyone mention that she seems bothered by it - so I am not sure its a conscious choice. I suspect that if anything she has been numbed by taking a bunch of meds she doesn't really need

No. 389329

>>389326

I love you, SLTanon. Very enlightening. I was the anon proposing neurological faking, and I stand corrected.

No. 389362

>>389315
Re epilepsy: that's what I meant (Anon of very long post >>389311 here). She is seizure-free now, and with non-epileptic seizures you don't expect that to happen with anti-epileptic drugs.

Why do you doubt the narcolepsy dx? She has type one, so if her neurologist is worth his dime, that one is probably genuine. With type two (narcolepsy w/o cataplexy) it's known that a relatively large percentage of patients have normal LPs and also a longer sleep latency on MSLT. So type 2 is probably mixed in with run-of-the-mill hypersomnia. (Which isn't always bad, as the same meds help hypersomnics as well.) But with type 1, assuming her doc did an LP, that's a pretty specific dx. It seems like she started piling on the diagnoses after her dx of both epilepsy and narcolepsy, so I think most of the persona we see now only started to build after that.

And I don't think that her open mouth means anything else than a bad habit. And her not realizing that it's not the most flattering pose, so she somehow chooses it as her thumbnail/instagram picture.

No. 389380

>>389362
Agree about the open mouthed pose. She and Judd use is constantly, both in the vlog and still shots. It looks stupid but clearly they think they are conveying something or they wouldn't do it so much.

No. 389388

Whatever happened to she-li the chronically dead?

No. 389395

>>388596

That's actually not a half bad idea!! I didn't even think about just deflating the balloon myself and taping it up/covering it up!! If I don't find a solid answer soon I'll just say screw it and do that haha!! Worst that can happen is I screw it up and need a quick tube change in IR!! No big deal!!

Thanks!!

Sage for MORE personal conversation.

No. 389399

>>389395
Exchange phone numbers or something. Fuck.

No. 389404

File: 1505833613351.png (42.95 KB, 750x498, IMG_3328.PNG)

Petty, but… Does it bother anyone else when "spoonies" don't fucking capitalize the "s" in their syndrome abbreviations?! It's EDS and POTS ffs. Syndrome is just as much part of the name. EDs make you sound like you're talking about eating disorders and POTs (or fucking POTS syndrome — that's redundant spoonfags) makes you look really fucking dumb.

No. 389405

What's with all the double fucking posts? It's really annoying.

No. 389406

>>389405
Probably glictches or people deleting to edit, but the system not refreshing on your end.

No. 389408

>>389362
Honestly, I doubt anything is really that wrong with her. Doctors are humans and plenty of them make mistakes, especially with diagnosing patients like Jaquie, who show up with invisible, self-reported symptoms. Is she actually dizzy, can't eat, and in pain? We don't know, because those are things she can easily claim without having actual proof. Autonomic and gi testing can be manipulated, I've seen other cows brag about it. Pain is patient-reported. She goes to Mayo for a lot of things, they assume there that everything you say is true if you're making the effort to be there. If jaquie had consistent symptoms, it would be one thing. But her symptoms aren't consistent, they come and go as she feel like it, they're worse when she's not getting attention.

No. 389460

"I'm just so grateful" really Jaquie, are you? Grateful for what? Tricking doctors??? I cannot stand her "I'm so greatful" thing she does every video

No. 389473

>>389404
CDs and DVDs!

No. 389480

http://www.sickboypodcast.com

This is a link to a podcast episode (or the front page of the website, where the episode is on auto-play and I can't locate a direct link to the audio) and I am having trouble deciding whether or not to take the guest seriously. Sickboy itself is a funny, quality podcast that brings awareness to both physical and mental health. It's unscripted and basically (in their words) "shooting the shit," so you may or may not find it enjoyable. It's better than other unscripted podcasts I've encountered.

Their latest podcast featured an 18-year-old girl who wears heavy-duty plate armor for LARPing (she was apparently wearing it /during/ the interview), but supposedly has EDS, POTS, and a plethora of the munchie-train diagnoses. She's really flippant about it and seems to have the whole "omg this is so serious and life-affecting but also no big deal when I want to do something like run around doing aerobic activities." I don't think it's munchie-rooted, but seems OTT in a weird, vague way that's hard to gauge over audio-only. Curious to see what other lolcow aficionados think.

Sickboy has had a guest in the past with EDS (legitimately, or so I would conclude), and this is such a stark contrast. They spend the first 20 or so minutes focused on off-topic chat and LARPing before getting to the EDS/etc. talk, so you can skip it without really missing anything - unless you want to hear a great long description of all the things she does despite the conditions that should make it much harder and/or unrealistic to participate in.

Not sure if she has an online presence anywhere else, but I'm looking. If anything, this is good for a low-key series of eyerolls.

No. 389531

>>389480
I honestly haven't listened to that episode yet because I know it'll probably piss me off. I generally love Sickboy but just the description of this one was making me cringe.

No. 389535

>>389531
I'm glad I wasn't the only one who had that reaction. Haven't listened to the last fourteenish minutes, I'll probably finish it later today.

http://sickboypodcast.com/blog/2017/9/18/slayer-of-dragons-mast-cells-ehlers-danlos-syndromes

There's the direct link to the blog post (with a couple of pictures. It seems far-fetched that someone with EDS hypermobility could lug around that armor?

No. 389538

File: 1505856032752.jpg (161.39 KB, 1421x820, IMG_3189.JPG)

Jaquie's dinner.

I know she always says she only has a few bites but whatever, she eats totally the opposite of what she should.

No. 389547

I know that I'm a little late but I'm just going to go out on a whim and you guys can agree with me or not or tell me what you think here. In reference to the whole Jaquie thing and her aiming for a neurological condition or muscle weakness now or possibly mito. On the previous threads there was mention on how as soon as her friend Julian got a custom wheelchair so did Jaquie. He claims to have neurological issues and muscle weakness resulting in. I don't know whether it's genetic or not, but I do see he did consult a geneticist about it, I just don't know what came of it really because he doesn't post as annoying intimate details as Jaquie. But it seems Jaquie only started experiencing these issues around the time they are together. Which to me is really suspicious. It's like she is trying to one up him, because she's a one upper of course. I think it's really odd they both have these issues and looking at him, it seems he had them first. I think she maybe felt threatened by it and had to suddenly make herself sicker since she always wants the attention on her or something? I don't know. Definitely seems too coincidental that he seemed be using a walker everywhere so then Jaquie did, then one of them (I don't know who but I'm assuming it was him, saw a geneticist) so I'm assuming she copied that, he got a custom wheelchair so Jaquie did.

No. 389550

File: 1505857313530.jpg (366.53 KB, 470x515, neuroma.jpg)

Rheuma_esgibtkeinzujung wasn't able to contact the surgeon for nearly a year and the neurologist wasn't able to tell her for a year or so that it's a neuroma. She isn't receiving any treatment for nerve pain, so I doubt that she has a neuroma.

She won't go to doctors, because she's too sick to see them.

No. 389551

>>389547
I doubt it's a coincidence. To me, Julian seems like a nice, genuine guy, not OTT or munchie at all. But when someone's like that, it often attracts not so genuine people, and he wants to believe they are legit. I definitely believe she is copying Julian. And every other chronically ill person who she knows irl and who she admires online (ahem, Mary Frey ahem)

No. 389553

>>389480
With the way she talks in her interview they most definitely have an online presence somewhere.

No. 389555

>>389551
Yeah. I agree. I was researching and looking at both pages today and watching videos. And it really just dawned on me that I felt that way.

No. 389617

>>389239
She looks ridiculous but I think she does it for the obvious reason of "look how sick I am but I power through it with this ludicrous smile" and she's trying to show her "hypermobility" with her double jointed thumb.

Saged for speculation

No. 389633

>>389617
Thumb doesn't even look the tiniest bit different from ordinary
What a cow

No. 389635

File: 1505868361014.png (1.02 MB, 1536x2048, IMG_3193.PNG)

Oh god, another one doing the fucking dumb thumbs up.

No. 389637

File: 1505868400934.png (260.19 KB, 1536x2048, IMG_3192.PNG)

The doctor who specialises in GI disorders doesn't believe in your disorder.

No. 389643

>>389637
Although the answer is obvious (for attention), why do munchies, er spoonies feel the need to tag a post about ONE DISORDER with all of their disorders? Smh

No. 389658

>>389637

Her GI is entirely right… MALS is a legitimate medical diagnosis but probably not a legitimate disorder. In other words, it's not clear whether it exists as a separate entity and being a diagnosis of exclusion, it is often slapped onto digestive issues that cannot be explained better. It screams juju, and I have seen several people already scheduled for.MAL release + possible graft recover just fine with dietary interventions, prokinetics and other conservative treatment. I know of one single case of a GI vascular disease (and that wasn't MALS but SMAS!) where surgery has made an appreciable positive difference. In all other instances, just as the evidence shows, it made no difference at best and sadly, it often worked to the patient's detriment.

No. 389671

File: 1505876416234.png (161.49 KB, 741x699, IMG_5558.PNG)

Gastric pacemaker?!
Sure Jan. Your GP is dropping your weight. Not ana.

No. 389676

>>389633
Couldn't agree more but given the fact she's angling, shit let's face it, practically begging for an EDS Dx/, and if a munchie is somewhat flexible, or even better double jointed, it had to be on display at all times: this is an absolute mandate for all EDS munchies.

Saged cuz she literally makes me gag.

No. 389677

>>389635
See this bitch is even straining to make her thumb look more hyperextensible.

Saged for fuckery

No. 389685

>>389538
Reeeaaal serious GP here. She's not even trying liquids, just jumps between solid food and tube feeding that skips her stomach. If she's going to lie that blatantly, you'd think she wouldn't show the world how she can actually eat. Even if she just has a few bites, she'd be able to handle liquids. Although we all know she can eat just fine.

No. 389689

>>389676
But she doesn't have the symptoms for eds, so she's forced to go with chronic Lyme, which gets her the toys without having to fake eds symptoms (munchies can't fake eds unless they have some flexibility, like a good percentage of the population does). She's still tagging all of her posts with "tubie" (so ew when adults use it), even though her tube came out and they won't give her another one

No. 389697

>>389671

Posts black picture - claims she is sitting in the dark to help with the headaches (since she gets called out on here for complaining about migraines with lights and loud music on - so now she pretends to sit in the dark for her downgraded headaches - keep in mind she is still on the phone).
And oh no she will have to find a new doctor that will listen to her like her current one - aka one that will buy her bs and write her referrals to get her to go away. Of course lets blame the specialist for not being a doctor to explain things (also doubtful since per her report he missed explaining the most basic of stuff - but she gets called out for not listening to recommendations so lets claim the doctor never made any).
And as predicted she is now angling for a gastric pacemaker. Her weight has been dropping due to her horrid eating habits. But I am sure she is telling her doctors that she is following all the diet recommendations (I suspect in her mind she thinks she is trying to follow them even though she isn't anywhere near close).

I think she secretly likes being posted about on here - in her twisted mind it means that she is so sick that it is unbelievable. Whenever she isn't mentioned on here for a while she usually comes up with some sort of post that she knows will get a reaction (Sometimes I don't want to give her the satisfaction but the horrible human side of me just can't help but enjoy the milk - I miss jonzie updates)

No. 389701

for fucks sake. I wish I could post the messages between me and the whiny EDS girl I mentioned earlier in this thread without revealing myself. It's the girl who asked me how I got my treatments. she keeps saying "I think I have this bc it happens with EDS" like I said, she reads into all of her symptoms and obviously spends way too much time on the internet, and now is ranting and seems overemotional that her cardiologist told her she wasn't disabled. She was kicking and screaming that she is barely mobile and uses mobility aids so she's obviously disabled! And having EDS and POTS automatically disables you (to which I replied chronic illness ≠ disability, and it's completely possible to have a chronic illness and not be disabled by it).

I literally have straight up facts every time I answer her, and she continues to whine and argue with my facts. I kind of want to block but in a way it's hilarious.

I can't tell if she's just a hypochondriac or munchie?

No. 389714

>>389701
well block her and post milk

No. 389731

The milk I get from her is from private messages so blocking would prevent milk :") kek

(legitimately cannot tell if you are saying she is not milky or something else, sorry)

No. 389754

>>389635
When I first saw the 'thumbs up thing' in someone from the YT spoonie community (don't remember whom) I thought it was b/c they were wearing a mask and it was some kind of a substitute of smiling for the camera. As there seems to be an overlap in the mask users and the thumbs up users, could this have something to do with it?

No. 389795

>>389754
It's the whole "look how sick I am but I'm still positive and so so brace, so give me lots of asspats" syndrome commonly found in munchies

No. 389823

Is it normal to get a wheelchair approved so quickly like Jaqiue did? I'm not buying it at all.

No. 389828

>>389823
NO not at all. I'm so fucking shocked about it. It pisses me off to no end. I have a SCI and it took me longer than her so it just makes me want to rip her apart when I see her getting this chair when she doesn't really need it.

No. 389831

This is ridiculous. Her dog "alerts" that she'll pass out, but she's perfectly fine and able to make it to a couch before "fainting" kek
Also she remembers being touched while passed out

No. 389837

>>389823
Can't help you there, I'm not in the US.

Anyone get a feeling Jaquie might be lurking here? Or maybe it's just a coincidence that she is discussing/explaining things shortly after we wondered about it. Could very well be, b/c she is explaining things ALL the time as she 's defensive about everything.

But apparently, she has severe diarrhea from her feeding tube formula, and went to the bathroom eight times last night before it was even four o'clock. Now if that is true, of course that's no good at all. I would want to switch formulas, too. But I'm pretty sure she said somewhere she could not tolerate it at 45ml, but did fine at I think 35(?). That was OK, b/c her weight was stable now. Now I know she is not making sense about the malnutrition and her weight (first she was gaining, then she was stable, after that she was loosing weight b/c she did not tolerate her formula, and then she was thankful that her malnutrition had completely reversed itself, and now she is not getting enough nutrients b/c she cannot tolerate her feeds at the proper rate. But can anyone make more sense out of it? When did she start talking about not tolerating her current feeds and wanting to switch?

Also, I dreamed she switched to her new formula and it was even worse. She asked her viewers for advice whether she should switch back or ask her doctors to start TPN. I think I have a gift guiz, I'm special too now! (Where's that emoji I was looking for??)

No. 389842

>>389837
I absolutely think she lurks here. That is why at times I address my posts directly to her. Hi Jaquie! She claims recently that she has dropped her feeds to 25ml but then she shoves junk in her pie hole all day long. She is so full of shit (okay well maybe not literally at this very moment if she really went 8 times last night…)

No. 389849

Not to mention, she's suddenly doing PT exercises in her video today.

No. 389853

>>389849
But mito makes her sooooo exhausted guys

No. 389857

I don't think that she lurks here. I think it's due to her recent comments. I've seen a ton of recent comments on her videos lately asking her why she's needed to use a walker full time lately and inquiring about her feeding tube bullshit. They aren't people who are skeptical but merely curious. So you know how Jaquie gets: DEFENSIVE MODE. She doesn't seem like the type to lurk into these websites, she never even addresses hate on her videos, Instagram or even replies to comments. She clearly believes she's above any type of questioning and too good for that and to be called out. >>389842

No. 389864

File: 1505922926501.png (Spoiler Image, 71.62 KB, 750x531, IMG_1910.PNG)

Did you guys listen to her reasons for not walking very well lately and needing a walker/custom wheelchair? My wife and I were actually fucking laughing out loud. Seriously she was basically using her recent chronic diarrhea as one of the reasons, her exhaustion from "malnutrition" even though she's a cow, and her chronic pain, and her POTS. Even though.. she has a fucking port , Meds and saline infusions for her POTS which is above line of treatment. I just still see no reason for all of this. Her progression is so sudden and for no reason. Her explanation in this video was laughable at best and made no sense.

No. 389871

>>389823
>>389828

Wait, did she already get it fucking approved? It's been like a month! How the fuck did she get that so fast when there are fucking paralyzed people that have to fight to get a new chair. What the fuck. What do we bet daddy is just paying outright for it?

No. 389872

>>389831
A lot of people can tell when they're going to pass out and have time to lie down, they don't need a fucking dog to alert them. I can't get my head around wanting this kind of attention, it's really embarrassing to almost pass out or pass out in public.

No. 389894

File: 1505924570662.png (324.02 KB, 1183x1682, IMG_0303.PNG)

Oh fuck right off, you whiny fuckers.

GP is more treatable and MUCH MORE survivable than the most treatable cancers. Very few people with GP die of malnutrition (the most frequent CoD is line sepsis, believe it or not). And if you think the procedures we put you through are 'barbaric', go fuck off and get off my fucking procedure list. I can't think of a procedure approved for GP that I would consider barbaric. Besides, most of you are fucking angling for those procedures, because it somehow fills a sick secondary gain in your heads and confirms that you are indeed forever the sickest puppies. You can't have it both ways - demand treatment but then also complain it's 'barbaric'.

Fuck right off.

No. 389899

>>389894

Also, sorry for the samefagging, but diabetic GP is often relieved by getting blood sugar under control, many people with GP respond fully to domperidone or prucalopride, and many experience complete relief from a GNS. Most cases of GP have been cured… sorry that your super special psychiatric somatisation did not respond to medical interventions.

No. 389912

>>389894
Wait what? There's a cure for cancer? Hallelujah, praise the spoonies!

No. 389931

>>389828
Yeah seriously I have a SCI as well and in several forums and it's always ridiculous and sad when it's new chair time how long it takes for everyone to get new chairs. I'm super pissed she must of had daddy pay for it because I had tricare when I got my first chair and it took 6 months from start to chair to get it. And I was stuck in a shitty loaner chair till then and shitty is an understatement for my loaner. And munchies like Jacquie and others that don't need their stupid chairs just get their chairs what seem like over night.

No. 389932

>>389831
So many problems with this. Starting with how many times she squats and stands up with no problems (that she complains about, which I'm sure she would if they occurred). And then has time to go find a couch, complain that someone is nearby, decide which way she wants to lay on it, get comfy, and have her friend set up the camera to video her NAP.

Because yeah - that's a nap. You cannot remember things such as being touched while legitimately UNCONSCIOUS. POTS related syncope also usually reverses itself within seconds/minutes once the person is laying flat.

No. 389939

>>389912

Well, some cancers have treatments that can be treated fairly reliably with a low or negligible risk of recurrence, so it's probably correct to say they're curable.

No. 389942

>>389894

Right. As deadly as cancer. OR you can go to a dietitian, try some meds and agree with your dr to watch your weight and insert a temporary NJ if you loose too much. Just a thought.

(And yeah, I know there are severe cases, but even than, there are options. But of course, very deadly disease. I'm sure GI's everywhere can barely get themselves to tell these poor patients their GES results, because you know: once they've said it, there is no turning back.)

No. 389943

>>389831
She does this everywhere from
Walmart to where ever this is. She also gets into other people's faces screaming how their dogs aren't service dogs and always accuses people of interrupting her SD. Also her SD is not a service dog is a mutt she got in a pound less than four months ago and that "Alert" is her dog wanting that poorly fit halty off. This girl is super milky and nuts, her IG is a milky as well. I've never shared her here before because she's certifiable and I hate it when they down spiral and send their lacking over here.

No. 389964

>>389754
Jaquie does that thumbs up shit regardless of wearing her mask.

No. 389965

>>389943

I'm all for shelter dogs being service dogs, WHEN THEY ARE CAPABLE. Getting some random dog does not mean it can be a service dog. I agree that she is absolutely nuts.

No. 389966

Holy shit did you guys see how monotone and sooper sick Jaquie was in today's video and then she gets approved for her chair and she's over the moon ecstatic and flailing her arms around to a point that makes her usual arm bullshit look mild? I can not stand this munchie bitch.

No. 389975

>>389932
She talks a lot about how it is illegal to distract a service dog. And how she should call the police and that people could go to jail for it.

I've tried looking it up, but I probably don't know the right keywords as I'm not from the US. So does anyone here know if this is true? Where is that written? What law? I mean, of course it's totally NOT OK to distract a service dog, but I just want to know: IS it actually illegal?

No. 389983

>>389965
I'm not saying they aren't but she adopted a dog and two weeks later deemed the dog a natural alerted and a service dog and everyone in whatever fb group it was said stuff a long the lines of yeah no your dog needs more time before that can be tested and decided. And she flipped out and decided everyone in the service dog community was petty and hated her.

No. 389988

>>389975
Its illegal in some states but you're not really going to get much more than a slap on the wrist tbh unless you're going above and beyond and cause bodily harm to the service dog. Honestly the bigger issue is all these damn munchies with untrained dogs who bring them around every where and then they attack actual service dogs.

No. 389992

File: 1505931526430.jpg (805.64 KB, 1040x1554, Screenshot_20170920-131512.jpg)

Of course, outpatient isn't special enough, she has to stay in the hospital.

No. 390008

>>389992
"Mami" eyeroll

No. 390011

File: 1505933212377.png (79.42 KB, 750x336, IMG_1911.PNG)

This had me laughing. It's a reply on Jaquie's newest video. This is what I've always heard too. She's probably just being fucking dramatic. That's what your body probably does when you aren't supposed to be a on feeding tube

No. 390014

>>390011
Yeah and then Jaquie responds that she knows more than the nurse.

No. 390019

>>389697
She would have mentioned the gastric stim way before now if that's what the dr mentioned to her after her testing.

While the dr may not have the best bedside manner at times from experience he's a great dr and has always explained things and will thoroughly answer any questions.
You know if your special severe illness is actually real.
It's laughable she's claiming that.

They generally will not give the pacer to anyone who has a history of an eating disorder or if they have psychological issues that can hinder the whole treatment. It's generally not helpful for patients with pain (and I mean real pain) it's got very mixed results, which is why they adopted the temp. Pacer to see the results but not every place is able to do that.
At the same time I hope they do the pacer because if it helps she can't continue her whinning and wanting a tube and will get called on that
If it's a true option they would do more testing so I guess we will see what super serious problem the pill shows. I see her suddenly having less acid and total paralysis of her intestines.
And her local GI wouldn't do anything for her other than 1 GES raglan and a single botox. He referred her to temple because she was too severe for her local GI but now he is wanting a pacer for her?
Fuck give her a damn pacer if it makes her shut up.
So doubtful.

She fought SO hard to find a family dr that would see her. She went through a lot of them and they all dropped her. When she self tubed she actually went to her Dr. Appt.
With it in….

No. 390020

File: 1505934459727.png (69.59 KB, 750x747, IMG_3333.PNG)

good lord, this NINETEEN year old lists menopause as one of her conditions. I get you have have early meno but it's not really a chronic illness – every person with primarily female hormones goes through it sometime in their life lol

No. 390021

>>390011
It's really common to have diarrhea with tube feeding into your intestines, unless your intestines have really bad motility as well. And chronic diarrhea doesn't make you need a wheelchair, that's absolutely the most ridiculous thing I've ever heard. Take some Imodium and get on with your life

No. 390022

>>390020
* can have, not have have

(saved for utter proofreading incompetence)

No. 390023

>>390019
Most gi docs do not recommend gastric pacemakers anyways. It's not the standard GP treatment at least.

No. 390026

>>390021
Right???? Lol. It's just about .. if not MORE ridiculous than Janiece's need for a wheelchair for her sooper severe "gastritis"

No. 390027

>>390020
The .. GP? With a question mark really gets me going lol. She's not sure she even has it or has been diagnosed with it but she's gonna go ahead and list it… okay… sure

No. 390029

>>390023
You're right. It's not common unless all other treatments and trials have been exhausted. Pacemakers are a last line of treatment for patients usually evading death. They are typically a very serious situation. She is just being fucking dramatic but, what's new?

No. 390037

>>390011
It's not standard though. Not to blog, but I've never had diarrhea with a feeding tube. Not with NG and not with NJ. I've seen it mentioned before here as if tube feedings ALWAYS cause diarrhea, but that's simply not the case. In fact, I googled it back then, and I found that it's seen in about 30% of patients and there are even studies that suggest the feeds may not even be the cause of it.

What I don't get though: if she really has such bad diarrhea from the feeds, why not switch to another of the many, many regular formulas out there? With fiber, without fiber, soy based, more concentrated, hypoallergenic, even semi-elemental of elemental. There's LOADS. If I had such a bad time with a particular formula, I wouldn't stay on that one for weeks or even months while I waited for My Very Special One to be approved by insurance. I would ask for another one NOW. Also, she has used ensure before, right? So I suppose she can tolerate them. So she can put those in her tube, or get her dietitian to find a formula that's very close (ingredient-wise) to the ensures.

No. 390042

>>389975
I believe it CAN be a misdemeanor offense, depending.

No. 390043

>>389992
I have been so confused about Janiece's IG bullshit that has been posted here, but I only just realized that she's typing from her dog's perspective and not talking about her actual human mother.

No. 390055

>>390043
Hahahahahaha I'm dying, Jesus take the fucking wheel

No. 390057

>>390011
Geeze..the way some of these people act are just unbelievable
And you are correct. Diahrrea is very common with j feeds. More so when your intestines function well.


People who ask to be put on TPN usually get the raised eye brow with Drs in most situations.
If you need TPN your Drs pursue that carefully as most people have a very hard time accepting this need as it is end of care when it comes down to nutrition and hydration. And it is very risky and even harmful for several reasons..which is why it is the absolute last resort.
Yet shed be thrilled for it. Another flag.
>>390037
Diahrrea is not a reason to claim unable to tolerate feeds and need TPN but I think that's seriously what she is trying to do with the complaining and BS feed rates and OTT crap like not even trying different formulas while waiting for approval from a special feed that she will say does the same or worse. Nutritional wise there is so much she can and should be doing that she's just not.
I get the feeling she doesn't really do feeds..like she's tampering with it so she can eat, but conplain no tolerance and move on to more special munchie must haves.
Also, if she needed this formula her insurance would have approved it already.
Insurance denies it because there are other formulas that are cheaper and they want to pay for that over expensive formula.
If it's appealed and you and your dr clear it up that you have a medical NEED for this specific formula and the insurance can see her history of formulas tried and for how long and approve the coverage of the special formula.
She's not getting it because she doesn't absolutely need it.

That's what's the best about munchies..they get mad when insurance refused and madder when testing doesn't show what they want..its like they think they can just will science and others minds.

No. 390061

>>390037
That's just what I've been told by gi drs, possibly not true, what they said is that diarrhea is common in people because there's lots of us that can't tolerate higher fiber formula (bowel motility), but the normal formula is just enough to cause diarrhea. It's worse when you first start, but gets better. And it's better if you're not running continuous feeds 24/7. But jaquie doesn't want to put up with any discomfort because she's not getting any benefit from it. You put up with discomfort when it's better than the alternative

No. 390068

>>390011
Janiece has to use her wheelchair at Disney because of her sooper severe stomach pains and then eats pizza and churros. After her colonoscopy she eats sushi. What is with her and Jaquie eating some of the unhealthiest foods while claiming to be so sick and intolerant? (yes I realize that sushi CAN be healthy but often isn't and doesn't seem that great for an already upset stomach)

No. 390072

>>390068
That's why I don't buy a single word of it. Because those of us and others who are actually ill and intolerant of foods absolutely CAN NOT tolerant those foods or we will become deathly fucking ill. If it's something that makes you sick you won't touch it, plain and simple. Throwing up foods and having stomach pains from them is traumatizing. If someone is doing it on purpose they most definitely have an ED.

No. 390074

>>374856
This is fantastic! Thanks for posting. I don't often know how I should answer the question when they ask me 0-10.

In regards to the munchies, I can totally see how this would balloon easily from certain personality types. My grandmothers on both sides of my family had anxiety, but my grandmother one one side in particular was always obsessing over her illness, aches, and pains. I have a tendency to over-analyze every single ache, pain, or abnormal feeling about my body. If I wanted to, I could easily push to get a POTS diagnosis, but what is the point when I can make myself better by simply sitting down or leaning against a wall or by drinking more water and getting some food in my stomach? I've also had gastrointestinal issues my entire life and saw a gastrointestinal specialist when I was a child. I don't see one now and I just suck it up and deal with it when my stomach is bothering me or I'm not processing food well. I also just avoid foods that cause the problem, but if I don't avoid them then I just suck it up again because I did it to myself!

But if I was not so stubborn with myself and also self-conscious about what others think about me, I would see how easy it could be to manipulate doctors into doing every known test to man to find out what is "wrong" with me instead of just accepting it and doing what I can to work through the issues but still have a productive life and not bring everyone into a huge pity party about how I get ill after eating ice cream or how my knee a stress fracture from osteopenia or how I am constantly Vitamin D deficient or how I have strange neurological reactions to some medications or any of the other twenty thousand things that could be wrong with me depending on the day and how I'm feeling.

I feel like these women who revel in their illnesses are basically as anxious as I am and probably have legitimate complaints in some areas, except they also are attention seeking and want everyone to just love them in all of their dysfunction. I just prefer to keep mine private because I know that it would be over-exaggeration on my part and I don't want people to think I'm a whiner and a big baby. If I go to the doctor, that's my business, not anyone else's. I prefer to seem like a strong, normal person who goes to work every day and deals with the aftermath at home by myself. I don't need a doctor to give me a diagnosis but I'm managing just fine as it is.

Ok, rant over.(USER HAS BEEN PUT OUT TO PASTURE)

No. 390078

>>390072

Exactly. I am lactose intolerant and my gosh, I get so ill after I eat it. Sometimes I will eat it with lactaid, but usually I'm miserable afterwards. Dairy sucks and will ruin my whole day if I eat it, forcing me to rely on crackers, rice, and other mild foods.

No. 390082

>>390037
>>390061
It is supposed to get better over time with proper use..everyone is different and lots could cause her bum pee but she's just using it for more attention and more pity points and she looks more like a fool each time. And we keep fueling the fire but it's hard to not have a place to vent about the very people who make chronic illness have the stigma it does (yet they all are advocates for getting rid of the stigma..funny how that works)
Ensure and jevity are not used with J tube feeds because they are high in fiber and it's hard to tolerate..however when people have normal GI tract you can use them fairly easily..its common for ensure and jevity to be used for NJ/J tube feeds when in recovery from an ED.
Those are used more for NG feeds which is fine as it's just like drinking it.
But they make formula easy enough to digest for people with sever intestinal failure (J feed)and baring other illness they tolerate feeds with small hiccups for long periods.
That's what really gets me with a lot of these guys.
It's so selfish..there are so many people who actually have their faked illnesses who cannot afford treatments or can't get to a place for treatment. It's insulting when someone would give everything for their child, to feel better in anyway and can't while these guys just waste resources..
It's heart breaking. I don't think most realize how much harm they are actually doing and how well they've got it..
Sage for being angryRNfag

No. 390091

I looked it up. 3 weeks after placing the tube she says she hasn't reached her goal rate of 45. If she gets above 35, she gets pain and nausea and bloating. (No mention of diarrhea.) But as her weight is stable, het GI says 35 is OK. (Which I don't get: she said somewhere her formula is 1,2 kcal/ml, and it's supposed to be about 90% of her nutrition. I don't think she's very tall, but I still don't see how 45 ml/h can be enough, let alone 35. And lately, it's dropped to 25 or even 20 .) Also, she can stay on her current formula because her weight is stable on 35 and that rate she can manage.

Hm.. Will have to look when the first mention of 'not tolerating her feeds' is. I mean: I could believe she wasn't tolerating them well but hadn't mentioned it (actually with Jaquie I cannot, but for the sake of argument let's say I can). But I find it hard to believe that she could at first tolerate is, but now she can't? In my experience, it doesn't work like that. Rather the opposite: cramps, bloating, nausea and pain can be quite bad when you first start and whenever you increase you rate, but it gets better as your body gets used to it.

No. 390119

There's got to be a Munchie Manual out there with a chapter on How To Get Sooper Speshal Shit You Don't Need Faster Than Genuine People.

Custom wheelchair for having the fucking runs. How pathetic. Her cardiologist has got to be dumb as fuck too to "celebrate" her custom wheelchair (important to remember it's custom) with her.

Jaq mentioned a few times that the POTS doctor oversees a lot of "muh chronic illnesses". The entire video is full of moments I found myself questioning reality. Maybe it's a cultural thing but specialty consultants tend to stick to their own specialty here, other than general acknowledgements on how other systemic disease might impact their area of interest.

Sage for ragefag/patient fag

No. 390121

>>390119
I found that to be odd too. Not only that but you would think that her POTS Dr would be encouraging her to do things to increase her abilities not further decondition herself.

No. 390131

>>390119

Like you said, it's probably a cultural thing, but I have known many specialists who want to know the underlying cause of what they are treating in their speciality because there can be different approaches. It's probably a personal choice of the doc though.

No. 390151

File: 1505953771194.png (67.75 KB, 750x342, IMG_6507.PNG)

Dani is "willing her stomach to keep down some solid food". If this is successful then she should be cured (but of course she will only use the power of will when it convenient for her).
And why does she insist on continuing to eat solids when she claims to be struggling so much and tests show solids are the biggest problem. I don't think she has even given a liquid diet a day. But I bet she tells her doctor she is consuming only liquids.
Also note she made a huge deal about being NPO for her smart pill test - basically she was NPO overnight which if we believe her self reports she frequently goes long periods without eating. But if the doctor ordered it we must stress NPO to sound like we are seriously sick.

No. 390152

>>390091

Bullshit. I know we've been through this before, but for an adult that's not enough, even with how sedentary she is. Even if she was running her tube feeds 24 hours a day (impossible, unless she showers with it kek) which she's not (she's said she's not). Suppose she runs it 16 hours a day, with a 1.2 calorie formula (a typical one), that's only 672 calories per day, only about a third of what she'd need to maintain her weight.

No. 390153

>>390121

I don't think any of her doctors ordered the wheelchair. I think she's just buying one herself. Because her doctors, especially POTS, would want her to do more exercise, not less, and also because nothing works that fast here. Not only do you have to get into your doctors to get orders (which can take months), after you have orders insurance has to approve it, which usually takes a long time. And then people coming and measuring her for it? First, I highly doubt that, since she's not house-bound. Home health, sure, but ot and PT? They rarely do home visits for someone who can get out and go places, because they have a shit ton of equipment. Even if she's somehow wrangled home ot/pt, there's still the time it takes to schedule those visits, do the measurements, and talk to insurance and equipment companies. I think her lies are more widespread and blatant that we realize.

No. 390154

>>390151

It's the same as jaquie and janice, if something makes you that sick every time you eat it, you're going to stop eating it!! You develop a avoidance/fear of those things and don't willingly eat them

No. 390155

>>390121
Her POTS dr is actually a GP/internist. Posting screenshots would un-anon myself but back when she wasn't too special to answer DMs (she claims she can't anymore for "safety reasons" kek) we had a conversation where I asked what type of specialist she saw for her POTS (cardio or neuro) and she revealed that it's just a GP.

No. 390163

>>390057

Haha I know all of one person who has asked to be put on TPN… for GP that was basically exacerbated by anxiety and depression, and was nowhere near severe enough. As soon as she was told what it is actually like, she backtracked. We literally have to fight patients over TPN and some refuse it and pay a very, very high price, and there's nothing more frustrating to any physician than a patient refusing help that you just know they won't make it without.

So, no. Any patient coming to me asking for TPN would get a quickie psych referral, stat. Why? Because if you went to your GP and said 'hey, can I please have liver disease, high risk of sepsis, elevated T2D risk and a lot of other health issues for no absolutely medically warranted reason except that it's trendy among Instagram spoonies', they would tell you to tuck off, too, and rightly so.

TPN is seen as the entry ticket to 'big league spoonieing'. The NHS is less and less able to pay for it, there are repeated calls to restrict prescriptions, especially of custom bags (as opposed to OTS TPN bags aka roll up bags, which are preformulated and not formulated for the individual's needs), and I'd say I'm pretty good at noticing when the patient is pushing me towards it. In some cases, a TPN prescription is uncontroversial, e.g. severe short bowels, but in functional disorders, I am expending a lot of time and energy trying to make young and relatively healthy (= BMI >=20, A/G ratio within normal, not anaemic, trace elements and vit levels normal, electrolytes normal) people (almost invariably young women from late adolescence to mid-30s) understand that TPN is not a solution and we won't even consider it until there's a dire medical necessity.

TPN is actually a relatively new thing, and HPN (home TPN) even more so. And even with Omegaven having reduced the liver failure risk by a lot, it is extremely strenuous on the body, and of course there's the omnipresent risk of line infections. In the end, we don't really know how long the body can sustain it. Most of the oldest HPN cases have been on it for 10-15 years or so, which leaves us with very little data as to what consequences there are down the line, some of whcih we might not even be able to predict and others that are immensely costly to prevent and manage (consider the frequent bloods, DEXA scans to monitor for osteoporosis, blood cultures for every fever, blah blah blah).

No. 390167

>>390029

With all due respect, no.

The GNS is NOT a last line treatment. In fact, last line, near death patients would in all likelihood lack the contractility to benefit from it, and usually those patients also tend to exhibit pan-GI issues rather than mere GP.

Candidates for a GNS must have 1) working intestines, 2) a disease course as short as possible (the longer it lasts, the less effective the pacer tends to be), 3) no pyloric sphincter issues, 4) primary complaint being vomiting rather than malnutrition, constipation etc. as there is no evidence that gastric transit is actually sped up significantly by the pacer. As such, a good candidate would be a young, otherwise fit person who has failed on two medications already (this may be relaxed in the US, as MCP is the only medication approved for the wider GP indication - in the UK, there's also domperidone and prucalopride).

TL,DR: the pacer is not an indication for the most severe cases but for cases with an irreversible cause/idiopathic GP but intact intestinal transit whose primary issues are N+V.

No. 390169

>>390119

There is. The UK version has the Queen on the front cover, the American version has, I believe, the good Mr Benjamin Franklin on it, in a nice greenish hue,

No. 390171

>>390119

So, how long till ostomy for the suuuuper severe shits?

No. 390178

>>390171
Ew. But if she indeed gets one, she'll automatically win top munchie

No. 390181

If she is truly having diarrhea 8 times per night maybe she should stop eating so much fried crap. Honestly, she is ridiculous.

No. 390190

>>390153
Jaquie said today that insurance paid 85% and she has to pay 15%. And a couple of months ago Judd took her to a facility to get measured for the chair, it wasn't done at their apartment. She does have a CNA and PT come to the apartment (CNA paid out of pocket).

No. 390193

>>390155
She won't respond to DMs for safety reasons?!?!? Wtf? Will it cause anaphylaxis? This ride just gets weirder, you couldn't make this stuff up!

No. 390196

>>390190
Interesting how she's got an answer to every question on here. Good thing she's got a patreon to cover that 15%. I feel sorry for all the people she's getting money from her pathetic sob stories. Well, at least when she gets her wheelchair she been less active, and it'll be more entertainment for us to watch her weight balloon up even more. Next she'll be on one of those Rascal scooters

No. 390203

I don't even understand why she wants a wheelchair because she doesn't even fucking ever leave her house lol. She's basically home bound. That wheelchair is just going to collect dust. She claims it's going to help her gain independence and she'll be able to push herself in it but I really don't see why it was necessary because… whenever she leaves her home she's never alone so the transport chair would've been fine because there's ALWAYS someone to push her anyways. She doesn't fucking NEED a custom chair to push herself. The bitch is never alone and she never even leaves her house! It makes zero sense.

No. 390208

>>390203

She needs a wheelchair yet she can manage to her herself on and off the floor to do her exercises on her mat…?!

No. 390209

File: 1505962576187.png (152.24 KB, 750x1147, IMG_3334.PNG)

If you want to see a top notch munchie, go check out bendycripple on tumblr. She has been outed for faking a central line in the past, loves listing all of her health stuff, and cries suicide (or makes pathetic attempts) at least every other day. Don't get me wrong, suicide and mental health issues are a big problem, but don't advertise your plans and shit to the world.

She also gets super offended when people note that she never appears hypermobile despite having EDS (though recently she's claiming vEDS – the past few years she's gone between the top three types). She likes to say "I don't have to prove my illnesses to strangers" and screams ableism all the time.

Puts even people like Jac, Shelbi, and Dani to shame.

http://bendycripple.tumblr.com/

(The page in the picture goes on for 2 more screenshots, but you get the picture)

No. 390215

>>390209
She also lists a lot of illnesses that cannot happen together.

+ CVS is diagnosed only in the absence of other things like GP. And it's especially not diagnosed with bulimia!
+ You cannot have bipolar and schizoaffective (schizoaffective bipolar type is a subtype not a distinct diagnosis → if you get dx'd with SA, your mood disorder gets wiped, as would a schizophrenia dx). She used to claim this. No longer does.
+ idiopathic myoclonus is diagnosed only in the absence of epilepsy or other seizure disorders, otherwise it's just a symptom
+ don't get me started on joint hypermobility AND EDS
+ multiple distinct autoimmune disorders?!

She just recently started on the CFS/ME train but never had sleep studies to rule out other things.

She used to claim "mild cystic fibrosis" but now she says she just carries the gene.

And she lists lazy eye as a disorder lol

No. 390218

>>390208
That doesn't necessarily mean anything. Lots of wheelchair users are recommended to do exercises, particularly floor exercises because that's usually all they can do. Or in the bed. I'm the PT anon whose posted on here before

No. 390221

>>390209
OMG thank you for this, so much entertainment!

No. 390226

File: 1505963743914.png (626.79 KB, 2048x1536, IMG_3194.PNG)

She says she has CF in her FAQ but it's not on her "spoonie list".

No. 390239

>>390209
She was in The Emily Program for a while (same ED group that one of the previous munchies on this thread have been to).

She also lists all of her past mental health facilities kek

No. 390243

>>390239
Why her doctors continue to give her medicines like:
oxycontin, ativan, lithium, prazosin, methotrexate, norco
on an outpatient basis with her suicdality and history of attempts is beyond me?!

Also, why she's on so many (at least 3?) SSRIs+SNRIs at the same time as multiple narcotics is scary. That seems like a major risk for seratonin syndrome.

This girl is munchie gold, but her doctors have to be dumber than Jacquie's.

No. 390246

>>390203
Especially because she goes on and on about how it's not safe for her to go out alone or be home alone. "My mom had to move to Tampa bc it's not safe for me to be home alone" "I have to go stay with Paul and Janiece because it's not safe to be alone" "I wilt like a flower if it's hotter than 70 degrees" …. why the hell does she need the chair again?

No. 390249

>>390209
>>390215

Holy smokes. Someone correct me if I'm wrong, but statistically speaking, isn't it extremely unlikely for one person to have that many disorders? Although, of course, she listed a lot of symptoms as separate diagnoses like most spoonies do

No. 390251

>>390249
Yup. She's an anomaly kek

No. 390256

File: 1505967668667.jpg (862.99 KB, 1440x2180, Screenshot_20170920-231519.jpg)

>>390171
I hope never.. I see endlessvoices claiming this after her pill test were she will report the most severe motility in intestines/colon and that she has no option and will need a temp. Bag or hell even a permanent one,
(I just have a gut feeling her mild GP, severe acid, great intestinal motility and her normal liquid digestion and weak throat will become so severe and she needs TPN asap. We've seen her begging for it in the past.) And probably her entire GI tract removed immediately, no need for more testing.
Maybe that's OTT opinion lol but I don't be surprised if something along these lines happen as she is trying so hard to be so miserable.

I find it alarming she still can't say what test she is having done next..she doesn't know what it is still..im leaning towards it being her going back to clinic to hand over the smart pill stuff for them to start getting the data and notes and results all together.
Surly she wouldn't be that dull to call that a test?

Is there another test they do with the pill normally?

No. 390268

>>390256
Are you Dani? Your typing style is similar and barely makes sense, very much like the caption of the picture accompanying your post kek

No. 390284

>>390193
Yeah, it's complete bullshit. It's so if you want to talk directly to her, you have to pay her via Patreon. My eyes are rolling so hard they fell out of my head.

No. 390295

File: 1505978049371.png (74.71 KB, 800x265, Screenshot_2017-09-21-00-02-11…)

In the clip Sophie says that her non-epileptic seizures calm down with Gabapentin and stop completely when she increases the dose. When she is unable tp keep food down they start up again. Her GP said "that shouldn't happen with non-epileptic seizures" (which part?) so she will be seeing her neurologist again to retake some tests.

No. 390296

>>390209
How bored, lonely, and underachieving do these girls have to be to do this shit?
Like, their lives must be fucking dark if this is what makes them feel better…nobody who has achieved more than mastering toilets and capital letters would need to go so far as to need strangers to not just be aware she gets hives from masking tape, but to tell her she is great for surviving such a debilitating condition.

No. 390297

>>390209
Also you cannot possibly have two personality disorders at once, even when one is cluster b and one is cluster a.

No. 390303

>>390295
I have a feeling Sophie is trying to orchestrate an epilepsy diagnosis. She knows Gabapentin is an anti-epileptic so her seizures are suddenly not as severe. Her GP who won't have the best knowledge of Neurology because she is a General Practitioner and not a neurologist will then start to wonder if Sophie was misdiagnosed. Let's see if a Neurologist actually agrees to see her again. If you watch her seizure videos on YouTube they are very clearly non-epileptic with very classic features of non-epileptic seizures: Closed eyes, side to side head movements, moaning etc.

No. 390309

>>390303
Wait, is she the one that uses short-acting morphine for chronic pain? I've found a YouTube channel with only two videos, does she use a different account now?

No. 390317

>>390309

Yes, that's her. I thoroughly milked her Instagram in the last thread.

No. 390319

File: 1505984965118.png (370.83 KB, 720x1280, wp_ss_20170921_0001.png)

>>390309
It's her but a different username.

No. 390320

>>390317
I'm currently scrolling through it, it's coming back to me now.

Also, I just discovered that instagram posts can have videos! Yeah, I don't do social media, normally.

Scrolling though it though, I think there might be a pattern in her seizures. Don't have time to check it out further, but I think I saw at least two times she posted being bored and the next post would be her in hospital after a seizure/flare/whatever. Ho hum.

No. 390321

>>390320
> going to the hospital because youre fucking bored

fuck i wish i could afford healthcare cunts like this dont deserve it

No. 390325

>>390321
I didn't say that. It just caught my eye. If she has factitious disorder, I can imagine such a pattern. Such patiens often have predictable crises, i.e. when they haven't had problems in a while, they will always develop them. I also saw she is in hospital a lot after an outing. That might be more easily explained (overdoing it, hurting yourself as you do diffent things than when you're home) but still it also fits into the pattern of someone with FD.

>>390319
Thanks, didn't find that yet. She also replies there on comments with yet another account. I wonder how many she has.

But those don't even look like seizures, TBH. I'm no expert, but even to me it looks.. well, not like epilepsy. Not like it's out of her control. Not to be mean; it could be PNES of course which I'm sure is terrifying. But if her docs asked her to record her seizures (as she writes there) I don't think there will be much doubt as to her diagnosis if they see these.

No. 390326

>>390249

She tries to explain it by comorbidity, which of course she's completely butchering. Comorbidities aren't random. The chance that you have EDS doesn't increase the chance of getting lupus or CF. Most disease probabilities are independent, and most dependent probabilities are pretty well documented.

TL;DR: she's full of it.

No. 390329

>>390325
Exactly, I've seen videos of my own seizures and they are nothing like that.

No. 390334

>>390256

Judging by her mistaking it for an ECG, it is in all likelihood an EGG (electrogastrogram), which is basically a stomach EMG. EGEG (electrogastroenterogram) involves endoscopically placed sensors on the inside of the stomach that are then led out transesophagally and transnasally, much like an NG tube, to a recorder similar to a Holter monitor. It is a legit procedure. The transcutaneous version (tq EGG) is pretty useless but requires no endoscopy. You get what you pay for.

Given that like GES, EGGs are also susceptible to chemical manipulation of gastric motility through smooth muscle muscarinic receptors, it won't help distinguish a drug-induced/factitiously induced dysmotility, so really, not sure what the benefit here is…

No. 390352

>>390319

That intro video.

>I have no hobbies, I have nothing to do

>It's 2 in the morning and I've had 10ml of morphine so I'm tripping balls

No. 390353

Sophie's reaction to a doctor suggesting that her symptoms could be psychosomatic or factitious and attempting to discontinue her morphine.

No. 390355

File: 1505994133016.png (141.03 KB, 800x547, Screenshot_2017-09-21-04-39-53…)


No. 390356

>>390352

Anybody who describes herself 'tripping balls' should not be on morphine.

No. 390360

Despite her dented skull putting pressure on her brain, migraines, and seizures, she and her boyfriend head-butt each other to show love.

No. 390417

>>390297
You would be wrong. You can indeed have two personality disorders, even in the same cluster. In fact, similar cluster PDs have higher co-occurence rates. You will tend to see co-occurence in AvPD with OCPD or DpPD, and BPD with HPD or DpPD.

I'm having trouble finding the chart that lists the exact prevalence (it is a box chart that shows percentages of co-occurrences with each PD), but prevalence is under 10% of a co-occuranfe rate in the most common (which I believe it BPD and DpPD).

It can happen, it's just pretty rare.

sage for psych fagging

No. 390422

>>390326
Yeah, comorbidities are things like having a higher chance of developing POTS or tension headaches because of EDS, not having two completely different genetic mutations (EDS and CF) and a bunch of random shit like mental illnesses and miscellaneous autoimmune and other stuff.

Not one to usually mention weight, but she was on steroids for her autoimmune disorders and blew up like a balloon. She'd have better joint function if she lost some weight, but she NEVER talked about EDS until she was overweight.

Not to mention that overweight (joint pain) + lupus (acquired hypermobility in autoimmune disorders) tends to mimic EDS. She doesn't even have typical facial features of vEDS and I'm 99% sure she hasn't been tested (I think she says she has but she's never said "I'm going to go get testing done!" which you would think she would be excited about!)

No. 390430

>>390422
And she's too old to be diagnosed with vEDS, most people are diagnosed in early childhood, and are already having significant symptoms before they are adults, and many vEDS people go on to die in their 30s and 40s. But even hEDS and cEDS (the two most common types) don't just start having symptoms all of a sudden. The vast majority of people who are diagnosed as adults have had multi-system symptoms from birth, it's just taken that long for a doctor to put all the pieces together

No. 390441

>>390430
Exactly. You don't just "develop" EDS. It's hereditary. It's genetic. You are fucking born with it and although symptoms can be somewhat unnoticeable as a kid, by teen years at the latest you start to become self aware that something is off.

(I know we aren't supposed to interact with cows, but I asked her if she had genetic testing lol)

No. 390442

File: 1506006118026.png (30.64 KB, 742x346, IMG_3339.PNG)

>>390209
bendycripple this morning. must have gotten some heat from farmers kek

No. 390448

>>390422
Someone should do the math on that one and explain it to her. And then compare the chances of someone having ALL those disorders with the prevalence of factitious disorder (although the true prevalence of FD is unknown, somehow it's difficult to find people with FD who are willing to participate in a research study..).

Also, especially with someone who has both medical and psychological disorders and claims
to have almost everything.. I would so like someone to ask her if her doctors have ever thought of factitious disorder because she seems to fit the criteria. I wonder if she knows what it is; Munchausen seems to be a name that's more known to lay persons, factitious disorder less so. There HAS to be someone out there that would immediately answer "Yes, I was tested for that, I actually have a very severe form of it but forgot to list it in my bio..".



>>390417
I didn't want to say it, kek. It's not even rare though. It's quite common for someone to fit the criteria for more than one personality disorder (sometimes even up to five different ones!) but it's not very common for someone to be diagnosed with more than one. The clinician has to weigh whether it is appropriate/helping to diagnose another personality disorder. Most of the time, it's one PD that is more overt and adding another diagnosis 'just because' doesn't help explain the behavior better. Sometimes the situation may call for it, though.



>>390430
Well it does happen of course, but it's not that common. With vEDS, one fourth of patients have had at least one severe complication before they hit 20. And up to 80% before they are 40. And that's the severe complications, like organ rupture, aneurysm or major bleeds. So what's minor in terms of vEDS is actually not so minor for most people. It is very possible to be diagnosed only after the first major complication (esp. with de novo mutations, one of the reasons being that the hypermobility tends to be less pronounced in vEDS). But if you are already being tested for connective tissue disorders, vEDS and Marfans are the first things your doctors will want to rule out. So if it's known you have hypermobility and/or signs of a systemic connective tissue problem, it's not likely that you would 'suddenly' be suspected of having vEDS.

No. 390449

>>390441
Sorry, samefag as >>390448 (thought I covered all the bases, lol).

But, YES. Everyone I know with EDS that was dx'd at a later age will say "looking back, I should've known earlier that something was wrong". There is ALWAYS something in childhood that was just never deemed important OR that no-one thought to connect to some other stuff going on.

No. 390451

>>390442
"You're questioning my obvious lies so you're BULLYING ME": the munchie anthem

No. 390460

So.. Jaquie has her new formula. It's a peptide-based. So how does that work, an organic formula that's also peptide-based? I don't believe there's a difference with normal peptide formulas.

(But than again, I don't get the whole 'organic' thing, and certainly not the health aura it seems to have. But that's a different topic I guess.)

No. 390466

>>390460
So the girl that can eat total shit needs a super special already-broken down formula that's going to cost a fortune. God the sheer amount of waste

No. 390467

>>390460

This new formula has less calories. She's going to be getting .89kcal/ml. What do you bet that's part of why she wanted it. Even IF she ran at 45ml/hour, for 24 hours a day she's only getting 961 calories. Who does she think she's trying to fool? She's such a fucking idiot.

No. 390469

>>390467
Not only that but her insurance STILL hasn't approved it. Supposedly one of her minions (yeah right) contacted Kate's Farms on her behalf and informed them of her soooper severe GP and her soooper speshul struggles and they sent her a case for free.

No. 390470

>>390467
She said it has a higher calorie content? 1,5 instead of 1,2 for her current formula.

No. 390473

>>390469
Oh, I can totally believe one of her followers called for her. I mean, have you ever scrolled through that comment section? Jaquie doesn't even have to answer most of the questions, her loyal followers do it for her!

No. 390477

>>390470

My mistake, I guess I wasn't looking at the peptide. 1.5ml/hour is correct.

Sage for fucking up

No. 390484

>>390467
Anyone who struggles as much with maintaining their weight with GP as jaquie claims she does would not willingly go down to an considerably lower calorie content unless they absolutely had to. It's disgusting she's how far she's taking the whole GP thing in order to cover up an eating disorder (and not covering very well)

No. 390514

>>390469

Fucking hell. Looking forward to when fielding calls from trendy spoonies' minions yelling at me for not giving their idol the much desired GP label will be part of my life.

No. 390517

>>390467
She says it's higher calories. Is she lying yet again?

No. 390518

The new formula is $108 for a case of 12. Is that expensive for formula?

No. 390521

>>390518
How much is in one container?

No. 390524

>>390521
Where I live, one of the widely used formulas with the same caloric value as her formula (1,5 kcal/ml) costs about 10-11 dollar for 1000 ml. So as I said, it depends how much formula is in one container.

No. 390526

>>390521

325ml (11 fl oz)

No. 390536

>>390524
So at $9 per container for 325ml her formula is almost three times as expensive as a typical one? Wow. She is so incredibly high maintenance.

No. 390539

If she keeps at 25ml/hr, that puts her at around $18/day to eat. If she actually does up it to 45ml/hr that puts her closer to $30/day to eat. That's an expensive habit, never mind all the food we know she'll buy at restaurants, etc.

I haven't watched her video and I guess she isn't paying for it now but I cannot imagine this company will give her this for free forever.

No. 390542

>>390209
Med fag here… I've NEVER seen anyone with so many conditions before, some of those are part of the same disease… besides, having cluster A-B-C personality disorders all at the same time?? what??… this stupid list makes me mad

No. 390555

File: 1506020320195.png (126.71 KB, 750x694, IMG_3342.PNG)

>>390448
>>390417

I found one of the tables that I remembered!

http://outofthefog.website/personality-disorder-statistics#pd2

>>The following table shows statistically how likely it is that a person who is diagnosed with one personality disorder will also be diagnosed with another personality disorder, as defined by the American Psychiatric Association's Diagnostic & Statistical Manual of Mental Disorders (DSM-IV).


>>The numbers displayed in the table below are a statistical measures of co-occurrence known as "tetrachoric correlations". The more positive the number, the more likely it is that a person will be diagnosed with the second personality disorder listed. The more negative the number, the less likely it is that a person will be diagnosed with the second personality disorder in the table.


>>Note: This data was compiled from an initial survey of 5692 people in the US. None of the people in the survey sample were identified as meeting the criteria for Histrionic Personality Disorder or Narcissistic Personality Disorder. Therefore, no comorbidity information is shown for HPD or NPD.


Other studies show 16-50% of people with BPD eventually get diagnosed with NPD. I'll find the Study at some point or you can easily google it :)

No. 390564

File: 1506021944868.png (184.95 KB, 750x1070, IMG_3343.PNG)

That Felicity Rose girls now claims to have an L5 SCI and is a "parapalegic". Yet she can pose like this?

Her Facebook is pretty public…

No. 390583

File: 1506024193677.jpg (607.21 KB, 945x616, dramatic.jpg)

I can translate the rest of the post, but it's her normal overdramatic nonsense and it's really long. In a previous post she wrote that she was/is able to fight the nerve pain thanks to having asperger.

- she doesn't get sedation(?) for the nerve blocks anymore, because her body is used to them thanks to taking narcotics and anesthetic on a daily basis
- she gets Propofol for her nerve blocks, same thing you get for general anesthetia
- the dose of Propofol would put a person in a coma for around a month, but she always wakes up after a short time thanks to all the pills she has to take

She claims that she can't use crutches or the wheelchair, because of her inflammed shoulder(bursitis?). It's her argument for month now.

I'm not sure about the sedative part. Some people are questioning her, but her answers are always so vague. Doctors in Switzerland, Germany and Austria won't take her case, because it's too complex.

No. 390585

has anyone seen this? she's my new favorite munchie. she records all of her trips out and snaps at most people who talk to her. 'faints' in random places like couches at thrift stores and the floor of walmart

No. 390586

Interesting. Kate Farms sponsors Aubrey's Lyme Journey. So now that they are affiliated with Jaquie maybe they should change their slogan to Proudly Enabling Munchies. kek.

https://www.instagram.com/p/BXn0J1WH0oB/?hl=en&taken-by=katefarms

No. 390595

>>390564
I'm more curious about the heels.

I have club foot, and an l5 rupture in my spine.

I can't move my feet or toes at all, and the only shoes that I can walk in are flats. I walk through balance training with my physical therapists.

Unless she put on the heels after sitting on that table, she wouldn't be able to walk with an l5 injury, because that effects the nerves in the feet.

No. 390626

>>390585
Someone posted about her on this thread recently. And the previous one. She's pretty boring. The only entertaining video of hers is the one were she's sobbing and talking about POTS. There's videos (like this one) where there are entertaining moments, but it's too cringe worthy to even watch in my opinion. She's a complete bitch to anyone who even looks at her dog for 5 seconds.

No. 390655

>>390626
Agree completely. Her vidoes are too long and boring AF. If someone could do a highlight compilation or something that might be worth watching. It's kind of like watching Janiece. Long and boring. With a few bitchy moments interspersed.
Saged for samefagging.

No. 390665

>>390585
wait, so all that happened was the mom said look at the puppy from across the store and she felt it was enough to record, post on youtube, and yell at her for? kek

No. 390666

>>390655
All she does is post bitchy videos about public access issues, "fake service dogs" and that kind of thing. Her and so many other service dog vloggers. No editing skills whatsoever.

No. 390670

I don't know if Jaquie understands irony but in a vlog where she needs Kate Farms formula, she also had shrimp and chicken spaghetti for dinner.

No. 390671

>>390670
In a cream sauce no less…

No. 390677

File: 1506031952826.jpg (399.3 KB, 1271x1278, FullSizeRender.jpg)

Some new updates from MyBlondeVoyage. This sounds medically accurate, sure…

No. 390678

>>390670
It's okay tho because ppl have criticized her for having no hobbies outside of chronic illness vlogging and she mentions that cooking is a hobby. kek

No. 390680

File: 1506032006543.jpg (439.2 KB, 1271x1485, FullSizeRender 2.jpg)

MBV 2/2
Does she realise that sea salt and table salt are chemically the same thing? Nah, she has to be special.

No. 390681

>>390680

(I'm waiting for her to be cured by a Himalayan Salt Lamp now, kek)

No. 390684

>>390677

What she describes is dehydration though, right? All those useless vitamin IVs will help by just being fluids and she'll be convinced that the medical establishment is a giant conspiracy to keep her in pain or some ish.

Re: salt. Inexpensive things are poison. Expensive things are health. Also goes for Jaquie's fancy formula.

No. 390690

File: 1506033406532.jpg (177.72 KB, 1052x685, Screenshot_20170921-173014.jpg)

Kek. Why is she so condescending?

No. 390693

>>390626
>>390655

Agreed. They're pretty unwatchable. Worse than Janiece. She videos herself for what seems like 20 minutes browsing through kids' cloths, doing nothing else. O yeah, except repositioning her service dog once in a while. Most of her vids are shot from a weird angle too, you can't even see her face. The viewer is just watching her feet and part of her dog, for like ten minutes. She doesn't talk the viewer through it, does not explain what she is doing or why she is filming at that moment, nada.

The only things that are slightly interesting is when she bitches at people who look at her dog or come too close to it and when she faints in weird places and settles herself down on the floor or a sofa first, and her husband goes on shopping while she's passed out with her dog on top of her.

In a way I feel bad for even discussing her here, as she REALLY lacks any insight at what she is doing or how she is coming across. She gets ALOT of negative reactions on her videos (which makes her channel very different than most of the YouTube channels we discuss here) but she keeps posting the same kind of videos. Apparently, her dog not only alerts to when she is going to faint, but also to panic attacks. I dunno, I don't think you would miss the fact that you suddenly can't breath, get sweaty, extremely anxious and feel like you're dying?

I couldn't even begin to guess what her actual (psychological) diagnosis would be or what her story is. It's just absolutely and totally weird.

No. 390698

>>390684

Dehydration, "brain swelling from toxin exposure", same diff if you're prone to medical woowoo.

No. 390724

>>390690
Her reply to that comment legitimately made zero sense… anyone else agree? If you're small intestine is sensitive to something as particular as a formula you sure as fuck wouldn't be able to digest ranch or chicken nuggets. It doesn't matter if it's your goddamn large intestine or your small one this bitch makes no sense!!! Sage for rant but I'm so angry about her.

No. 390732

>>390690
…if her stomach isn't as sensitive as her intestine why not just fucking eat real food and pull the tube? what the fuck kind of answer was that she gave you? sage for RAGE

No. 390742

>>390724
she ended up blocking me i guess and i dont know if my response is there, or would be but i came back saying something like the concerning part is that you eat a lot of other stuff like fried foods and sandwiches and that it didnt make sense for her to be scared of malnourishment with such calorie dense foods. but i did also say next time eat a salad or grapes so maybe she got a little hurt by that

sage for powerlevel
>>390724

No. 390744

>>390742
She blocks anyone who makes her medical information look like it doesn't add up. Because if people actually paid attention and read the comments and thought for themselves instead of just listened to everything "Jaquie told them" maybe they'd have a brain of their own and figure it out. Figure out that she's a bullshitter.

No. 390749

>>390698
>>390677
None of this makes any sense what so ever..if her brain was swelling like that she wouldn't be typing anything anywhere, and be rushed in for surgery to relieve that pressure as there is not much room between the brain and the skull..i used "trusty google" for "brain swelling from toxic exposures "
Which is irreversible brain damage….shes definitely got brain damage for sure..

She sounds like she is describing like a very OTT compact sinus cavity….her brain posts are infuriating.

Here's a thought, maybe your brain is too large for the skull because it is so full of ways to rob people of resources money, time, and all the serious illnesses it has to deal with..
Ya know.. because that's completely medically accurate just like everything else she posts.

No. 390753

>>390749

When I think of "brain too large from the skull" I think of my friend's King Charles Spaniel who had a massive fit then died from this very problem. She doesn't have this problem.

No. 390769

>>390690

She is hoping that by giving some sort of BS answer that sounds vaguely reasonable to someone who has no basic medical knowledge (like elementary school level basic). The answer makes zero sense logically (since whatever she eats by mouth is going to pass through there eventually - and if her small intestine is too sensitive to have formula pumped directly into it but is fine with having food consumed orally passed through it then maybe she shouldn't have the tube in the first place). However she assumes her followers are too stupid to know that and hopes that if she provides some explanation that sounds vaguely medically they will follow her like sheep without questioning the logic.
And if you do dare question the logic - she will just make you disappear by blocking you.

She is interesting since she seems to be one of the few cows who doesn't seem to acknowledge her existence on this board (and there is no way she hasn't been tipped off that she is on here) and she has been this thread has been the jaquie show for a while now. I imagine it would be incredibly difficult to just ignore it all not read about yourself when posted on here. She either views herself as some sort of spoonie celebrity who thinks that haters are just part of being a special celebrity. Or maybe she gets some odd satisfaction out of it (either a "I am so sick and special that people assume my story can't possibly be real" or a "look how many people are interested in me" kind of way). I am just surprised that she doesn't seem to acknowledge any of the negativity.

No. 390771

File: 1506044646585.jpg (216.34 KB, 1039x901, Screenshot_20170921-204127.jpg)


No. 390772

File: 1506044679023.png (187.08 KB, 1016x1246, 20170921_204324.png)


No. 390780

>>390772
Of course she doesn't see any problems with her hair, it looks good compared to her gross bloated face kek

No. 390781

>>390744
Unfortunately she's suckered in lots of people that have little-to-no medical knowledge, and even less about the illnesses she's claiming.

No. 390782

>>390771
Thank god for the few normal people on her channel that call her out on her bull

No. 390791

>>390771
Wait….she hasn't seen a dietician?

Her Drs need to loose their license is they are really this blind….i really hope that's not the case and jaquie is just playing one the internet..i can't believe they gave her a tube, and then a better tube and then a GJ tube discharge from hospital without a dietician and is ok with her halved feed rate..
I guess this answers a previous post about her formula shit..she wont be happy with what the dietician will have to say….so much she should be doing and doesn't want to do. She's got a lot of options regardless how bad she tries to make herself seem.

Her wording is upsetting.." interested to see what they say"
To me that comes across as it's another appt, another specialist, more issues to cry about that aren't issues and more resources down the drain and those sweet sweet spoonie points..also like she feels she knows more than the dietician and already doesnt plan to do what they say unless she sees a way to turn it into a much bigger ordeal and try to dietician shop..hopefully her dr will take the dietician suggestions/order over Jaquies bs..maybe this will be the beginning of the end..i hope so.. (specially with the latest in her special formula, but hey the dietician may get that sorted out with supply company and fix the insurance issue if she agreed that is the best formula for Jaquie)
Also get the feeelig jaquie mainly wants to talk about switching to TPN.
I find it hilarious she thinks TPN is handed out like candy in the real world.

No. 390818

>>390470
>>390467
She said it has higher caloric content…1.5, I believe. I don't remember what she said the other stuff is.

Even though the stuff she is on now is not being absorbed properly, she says her weight is stable. She said she is NOT underweight, but her goal is to gain 10 more pounds.

No. 390823

inb4 jacquie starts claiming she needs an enzyme cartridge for her feeding tube.

mary frey has posted a video about hers and how it effects her malabsorption

jaquie was talking about her super special malabsorption today.

No. 390826

>>390539
Kate Farms seems tuned into social media and I saw that they gave some samples to someone else who reached out on social media, but it seemed to be samples not a life-time supply. But when you look at the KF website, they have a link for requesting samples. Eyeroll

So, to those who tube-feed here, Jaquie said that she would need 7 days to transition to the KF formula. She also said she was up with the runs 8 times last night. So, would you "transition" or just cold turkey start the new formula, figuring it can't get much worse than 8 times in a night?

No. 390827

>>390585
And her husband just keeps eating while she's receiving DPT from the dog as she "comes to." On this one, she comes to and then says she didn't realize the camera was still rolling (in perfect alignment, of course).

No. 390829

>>390827
How is she always conveniently able to catch her syncopal episodes? (the answer is obvious but what do others who don’t call out her shit think)

No. 390833

>>390829

cause when I faint in public I definitely like to add to the embarrassment by filming it…

No. 390834

>>390583
I’m assumimg she says she has CRPS, sounds like sympathetic nerve blocks. Where are the pics of her deformed affected limb if she has CRPS? Any munchie or overexaggerator would be posting pictures on a daily basis of their affected limb(s), because it’s not invisible in the least. Propofol, Versed and Fentanyl is generally used for LSB’s, and some places only use Propofol. I’ve only seen a handful of instances where a LSB was performed without any sedation whatsoever.

No. 390837


No. 390842

>>390837
Sage goes in the email field.
Lumbar Sympathetic Block. Treatment for CRPS, which is a really difficult ailment for munchies to try to replicate. The only ones I’ve seen try it literally have to put their limb in ice water, or try to burn their own skin off. It’s doable for the most adventurous munchies, but it’s way easier for them to just go the EDS, fibro, GP, CFS, etc., route instead.

No. 390851

>>390842

Sorry, spent the evening in the hospital myself and I'm not totally lucid.

No. 390858

File: 1506054723026.jpg (401.34 KB, 914x617, what.jpg)

>>390842
She has neuromas after several surgeries. She gets the nerve block every three weeks and it only takes away the burning pain for 8-10 days.
Isn't it kinda strange that her whole leg is numb, but her foot isn't? Her whole story is so fishy.
She wrote that she gets nerve pain after every cut they have to make and that's why she doesn't want to get a medication pump(?). Shes trying to convince people that this isn't normal.

No. 390859

File: 1506055409561.jpg (136.55 KB, 802x1334, IMG_5985.jpg)

>>390564
But she's a dancer? (This is on her third account - ballerinaboss_ )

No. 390860

>>390858
The pain being taken away for only a week or so is pretty spot on. Judging by the ballerina picture, if that’s recent… I can not imagine her having sooper spechul CRPS in that leg. Wearing anything constricting would be a huge no no. Would cause extreme agony. Both her legs look the same lol… if you look up real photos of CRPS limbs, they’re fucked up. Even in a less severe case, there would be extreme color change, mottling, severe edema or atrophy, and limb deformities.

Some people have tried and failed other treatment for it, like a Stimulator, ketamine infusions, desensitization therapy, etc., but still manage relief from the blocks themselves. But if she is getting the blocks that often and hasn’t tried any other treatments yet, that’s very strange. Not everyday a Munchie chooses CRPS as their disease, what a rare fascinating specimen she is.

No. 390861

>>390860
Ballerinaboss is Felicity (missfelicityrose/feeociousfighterfelicity) I might have replied wrong.

And close fitting pants in CRPS can be a godsend. Then wind/the pants moving doesn't cause sudden pain increases. The spoonies love their Lularoe…

Sage for being inept at replies

No. 390863

>>390861
Actually it was my bad on the reply. I’m a retard.
The idea of any type of compression makes me want to hurl, I don’t know how people do it. That one girl may not be a Munchie, just extremely OTT, it’s just not an easy disease to try and fake for Munchies.

No. 390869

File: 1506058014818.jpg (169.93 KB, 804x1334, IMG_5989.jpg)

>>390863
Gah. Apparently Felicity also has CRPS. I thought only the German woman claimed to have it. I unfollowed Felicity ages ago because her posts were so crazy that I forgot CRPS was one of her conditions. Which, how? How is she doing that kind of dancing and going to a summer intensive (crazy ballet camp where you dance for hours and hours every day). She uses a wheelchair and wrote about how she has to use a wheel chair but posted this last week. Girls like her are the reason residents give me side eye when I tell them I'm in pain with a straight face and people don't take people like me seriously.

No. 390870

>>390860
She tried the stimulator and they removed it this year. Now she has nerve pain in her back in her butt cheeks. At least that's what she wrote.
Her leg is too normal for someone who claims to have CRPS. She's able to go swimming, which seems really strange. How is she able to tolerate the pressure from the water? The little waves other people cause.

She's from switzerland. The cow rheuma_esgibtkeinzujung from austria is also claiming to have CRPS now. Do we have another cow from germany who has CRPS?

No. 390872

>>390869
Okay that’s a weird ass coincidence considering the misreplying I did.. wow. Unless she’s in remission, there’s no way she’s doing any ballet with CRPS, what body part was it in? The support groups for that disease are bad with OTT people. It’s a lot of “The McGill pain index rates CRPS as the most painful condition known to man! My pain is a 15 out of 10 every minute of every day!”. I remember one girl who was caught by doctors dipping her leg up to her knee into a bucket of ice water in the car before going into doctors offices to feign color change and cold temp.

No. 390873

>>390870
Not even just the pressure of the water, but the chlorine itself can really mess with some peoples skin. Ah, the old “The Stimulator made my CRPS spread to my back and my whole body!” shtick. Amazing how the OTT spoonies now find having CRPS in one limb isn’t enough, every one of them ends up with sooper serious full body CRPS with organ involvement! Sure Jan.

No. 390875

>>390870
I was merging rheuma_esgibtkeinzujung and nervenkriegerin into one person in my mind since they both seemed to be claiming CRPS and post in German.

I know lots of CRPS patients who, when their pain is managed can do a lot, including some basic, old lady ballet. And even teaching adaptive yoga. But no balances. No jumping. No summer intensive for pre-professionals. While the groups are filled with the most ridiculous people ( they wine non stop about not getting their sooper speshul ketamine boosters approved. And they're always going to die from their pain. Or want to know how to get docs to agree to ketamine or cannabis or whatever magic hooey device they have found)

No. 390887

>>390833
>>390829

I don’t know about you all, but I generally feel pretty shitty prior to or following passing out (depending on what causes it) and my first thought when passing out isn’t “let me get my camera”. Like… I feel incredibly drained, sick, and anxious (especially if it happens in public). Why film that? Attention for something so… embarrassing… seems odd? I guess any attention is good attention?

saged for powerlevelling

No. 390890

>>390859
She has literally said “I became a parapalegic over the summer” based on an L5 injury that happened when she was 15 (at least 3 years ago). Her doctor then told her it was just a broken back. Seems pretty odd/rare to miss a SCI for 3 years and it all of a sudden leave someone “paralyzed” ← kek, paralyzed enough for sympathy but not to stop her from doing mobile things that she WANTS to do

I think it’s just another excuse for her to stay in her precious wheelchair and milk attention. We all know her dance account I separate to make her illusions seem more realistic.

No. 390892

>>390863
Probably because LLR is actually pretty comfortable when you actually have chronic pain? I’m not sure if the munchies hopped on the train to look sicker or what, but softer material clothing is incredibly helpful to a lot of people with illnesses.

No. 390894

>>390823
People with cf can't make the necessary enzymes, which is why they have to supplement them. Is jaquie going for a cf diagnosis next, or is she just an idiot who doesn't understand science?

No. 390899

>>390894
I’d say it’s the latter. Unless she’s stupid enough to believe that she can convince her followers that “she’s a super rare case of adult onset CF” kek

No. 390901

File: 1506061939530.jpeg (329.84 KB, 750x1060, B470ABC9-DAD7-4A08-88FB-0CF395…)

Felicity Rose
over dramatic much?

Bronchitis is going to cause her to
>>cough up a lung (and die)

No. 390904

>>390583
>
- the dose of Propofol would put a person in a coma for around a month, but she always wakes up after a short time thanks to all the pills she has to take
Bullshit. Propofol is a very fast-acting, short half-life anesthetic. She is so full of shit. To induce anesthesia, propofol has to be administered via continuous IV infusion and discontinuing it means patient wakes up within minutes. That's the beauty of it for quick OP procedures.
/anesthesiafag

No. 390965

>>390791
I cannot WAIT for Jaquie to waddle into an RD's office and get a dressing-down about her weight vs. what she claims to be eating, even if she lies through her rotting teeth about getting 90% of her intake through the tube (which is the percentage she's now faking, if I'm not mistaken). Who wants to bet that creamy shrimp, giant sandwiches, and oreo cereal won't be recommended? I'd so want to slip a folder full of incriminating photos into that provider's inbox.

It's true that "healthy" can be relative depending on someone's situation and needs in regards to weight gain - someone truly underweight and struggling to gain should be encouraged to eat whatever they can whenever they feel capable as long as it doesn't exacerbate preexisting health issues. But this is clearly not Jaquie's situation, and her assertion that her weight is "unstable" is laughable. Unless she's seeing major spikes from fluid retention and binging and then "losing" that weight (a lesser amount) on the backswing. I wouldn't doubt she manipulates her weight for appointments to make it seem severe. Not that hard, unfortunately.

I hope to god that some professional out there will see her videos, the shit she eats, and then come across her in practice. Some professional who won't put up with her bs, that is. I wonder if J would freak out and play the victim or else try to hush it up.

No. 390966

>>390965
We either wouldn't hear of it, or it would be "a terrible dietitian who doesn't know how all of her chronic illnesses interact". My guess is the latter.

No. 391005

>>390965


I'm no fan of Jaquie but honestly, she's not fat. She's well within the normal BMI range.

No. 391011

>>391005
She's not fat but the way she talks about her sooper severe malnourishment and weight loss you would think she is skin and bones and barely clinging to life. Where if anything, she has a puffy face and her stomach is definitely bigger. We know this because she shows us her bare stomach allll the time. She shoves a constant stream of fried, fattening and junk food into her pie hole while moaning about not tolerating feeds. She is a hypocritical lying cow. No one would call a regular person in life who looked like Jaquie fat. But Jaquie is far from a regular person in life.

No. 391017

>>391011
And the rate at which she gained that visible weight was incredibly rapid.

No. 391022

>>391011
Agreed completely.. all except for again like we've mentioned malnourished doesn't have to mean skin and bones. It can be different for everyone. It has to do with what you're lacking on the inside. While most who are "malnourished" are skin and bones it's not always the case. I just want to clarify. Not defending Jaquie in anyway, I think she's a fucking lying idiot I'm just clearing this misconception. I don't think she's fat either, but I also don't think she's losing weight. In fact she does seemed to have gained weight especially in her face since the tube and in the stomach. You can tell if you compare photos. If I was really bored enough I'd make collages for you guys.

No. 391042

>>391022
Yeah we're fat as more of a comment, since she goes on and on about how she's so malnourished she needs a feeding tube, while she's eating junk and obviously gaining weight. She's still at an average weight, but talks and behaves like she's an underweight ana chan skeleton. It's more the rapid weight gain while she's claiming she can't eat and can't tolerate her tube feeds. What she says and how she looks and acts don't add up

No. 391045

>>391042
Exactly. She sits down to incredibly rich and mostly deep fried meals in every vlog yet expects us to believe she needs sooper speshul formula. No one can validly claim that while wolfing down fried shrimp, hush puppies, french fries, cream sauces, ice cream, macaroni and cheese and oreo cereals.

No. 391048

>>391022
True, but it IS about loosing weight. I know you can lack all sorts of nutrients while having a stable weight. But when we're talking malnourishment and undernourisment, it's about the percentage of weight you have lost, and the timeframe in which you lost it. If you've lost 30% of your weight in five months, you are malnourished no matter your weight.

The problem with Jaquie is not that she is fat (because she isn't). It also not that she is gaining (that's OK, certainly at her weight). And - to me, at least - it's also not about what she is eating. I don't think people here would call someone out on eating the things Jaquie eats IF they didn't lie about having severe difficulties with eating, how much she was eating and needing a feeding tube.

The problem is that she has clearly gained some weight while if she is telling the truth about what she can eat, she should be loosing SO MUCH. With her current (old) formula, she wouldn't even get 700 kcal a day if she is running it on 25/ml an hour if we postulate she is running pretty much continuous. (I've calculated it with 23 hours out of of 24, as you have to change bags, set up the pump and shower and all. And that's being generous.) She would get 690 kcal a day with that from her formula. The formula is supposed to be 90-95% of her intake, because on many days she says she doesn't eat anything and when she can eat, it will either be vomited up or it will be drained from her G-port.

That means she is getting about 40% of her daily caloric needs. And she says her weight is stable. That's not possible. Granted, she has also said she has gained weight AND that she has lost it, but most of the time she goes with stable.

She has also said that with the option of draining her stomach she could eat more, but still maintains that she can eat less than 10% of her intake. And that most of what she manages to eat orally, isn't digested anyway.

And on top of that, she is eating stuff that would make even someone with MILD stomach or intestinal problems extremely sick. But she still needs a special peptide-based formula. It just makes NO effing sense. Whatsoever.

We all know this, of course, so feel free to ignore my rant. I just needed that. Thank you.

No. 391049

>>391022
It's very obvious, especially in her face and arms. She's not fat but she's got a moon face now. If she's binging and purging though (definitely possible), that might be making it worse. But it's definitely the face of someone who gained a significant amount of weight really fast, which can happen when you're restricting to get a feeding tube, and then go back to eating junk because you now now have your precious precious toob

No. 391050

>>391048
Exactly. She eats way too much to need that tube, especially with how little formula she actually runs a day. And she wasn't underweight to start with (her face and body looked perfectly normal). She has that tube purely for show and spoonie points, and to "vent" her stomach. And tbh, the majority of people who actually need to vent their stomachs are venting only bile and air. Gtube vents aren't designed to drain solid food.

No. 391062

Jacquie's claiming that a lot of her formula "spoiled." Trying to cover for the fact that it's obvious she isn't using up as much as she's supposed to be putting through her tube, it seems. So cans aren't disappearing, she just chucks a bunch out so no one would be able to tell they're stockpiling over time.

No. 391074

Quick question for someone who can know this: when Jaq was in the hospital she said she was feeling so much better after just one night of TPN. Is it typical for patients to bounce back that fast on TPN? Thankfully I have no experience with it. But I know that with tube feeds it can take MONTHS before you get some of your energy back and start feeling like yourself again. In my experience, the pounds come first but you can be out of the 'underweight' zone for a long time and still feel like a zombie. Does TPN somehow speed up that process? I've been wondering about that.

No. 391096

>>390441
Notice she hasn’t responded to the genetic testing question kek

I’m sure all that drinking she does is great for her illnesses and medications.

No. 391102

>>391050
And today the cow eats fried hush puppies and mussels. Janiece supposedly is in so much gallbladder pain she can't even walk but she eats fried oysters and fried shrimp. The disconnect is extraordinary.

No. 391109

You guys have to watch Judd making fun of Jaquie climbing a ramp in her walker in today's vlog. It is priceless. Starts at 4:58.

No. 391120

>>391062
>>391102

As far as I know neither of the formulas spoil for a while, it only needs to be refrigerated once it's opened. That's just a fucking cover up.

Gallbladder pain sucks, but it doesn't make you unable to walk. Those fried foods though, those should fuck her up. I'm 100% certain her doctor told her to avoid fried foods for now, and even after she gets her gallbladder out. She's just fucking stupid.

No. 391130

I was just watching Claire Wineland on yt and it just struck me how different she is from Jacquie and the like. She has CF and her health is pretty terrible, but she's still living her life - studying, traveling, working etc. And people think that Jaquie is great at "representing people with chronic illness" while she eats hushpuppies with her super serious GI issues. Ugh. Why did I even watch her video, just looking at the amounts of fried foods in her vlogs make my stomach hurt and I'm completely healthy!

No. 391137

>>391109
Yeah, that was funny. Until Jaquie spoiled the joke by telling us "that was a joke". Yeah.

And while I am willing to believe that Janiece is (or more likely at this point: was) in pain from her gall bladder, I really do NOT believe what they are trying to sell us here. I can't imagine her doctors haven't commented on it, too.

Also, I just noticed that for the past few weeks, I think Jaquie has told us in almost every vlog that today was a day that she was able to eat more than usual. But when asked about it, she still can't tolerate anything orally. And what she does eat, doesn't stay down anyway. She also says that sometimes, she doesn't eat at all for days. Yet in every vlog she eats. Small portions most of the time, and sometimes she skips a meal (on camera, anyway) but I don't think we have seen days where she didn't eat at all. Even just before her feeding tube surgery she would munch (ha ha) at a cracker and try some broth.

That IV Zofran is really doing miracles for her, huh?

I have to say, when this al begun I believed that she had some issues with food. Not to the stage of needing a permanent tube, but she was eating very little before she got it. But the longer I watch her, the less I believe her. On this point anyway, I still think some of her problems are genuine.

No. 391143

File: 1506112055752.png (238.9 KB, 677x662, Screenshot_2017-09-22-13-17-53…)

>>390295

Can any medfags weigh-in on this?

Sophie has not stated her dosage of Gabapentin or if she was prescribed it for pain or for seizures or for both.

No. 391148

>>391143
Not a medfag (psychfag though), but hypoxia is not typically seen in psychogenic seizures. I wouldn't say it's impossible, but I've never heard of it. It is however not difficult to intentionally lower your sat rates.

No. 391160

>>390769
i think there's truth in her getting a twisted satisfaction out of "fooling" doctors, family, and strangers.

No. 391165

>>390791
she likes to feel like she's part of a medical team. she's interested to see "what they say" rather than interested in finding what the problem is and trying a legitimate solution. she manipulates doctors by presenting as a homegrown expert of her own illnesses, which leads them to believe that she somehow knows her body better than the average patient (namely that she's bright, cares about her health and has insight into her conditions). still, i am sure she has or has had specialists who suspect munchausen's, but it's not like you can just accuse a patient of faking/creating their symptoms without some serious evidence, and even then the best thing to do is give a psych referral to help them "cope" or some such.

No. 391168

>>390226
Rhetorically speaking but how does one have a "mild case of CF?" I'm presuming she's shooting for ATp and don't want to say much, but mild CF?

Clearly she's contraindicating a lot of bs here (so well written anon) but seriously do these munchispoons think everyone is as uneducated as they are? Don't they even consider some people might not have been taught by WebMD but could actually be learned in med, nursing, psych, genetics, etc., or may possibly even have the disease(s) they're claiming?

I realize it's one big munchie competition to "be top munchie" but these people can't really be this foolish and think people believe all of their bs. A fake line was mentioned and she was apparently called out. A fake life ffs? Even laypeople have been calling out many on their bs let alone professionals so how do they still feel they can maintain these personae? They really do have to get their hands caught in the cookie jar per se before they realize the "game" is over don't they?

Sage for rant

No. 391183

>>391168
Yeah, she faked a Central and was called out by people online – she apparently never wore it when she went to the doc. It was a while ago and I can’t find the account where she was called out, but she admitted to it afterward. It was when she was hands-full-of-hospital-bands. People noticed something was up when her dressing was covered with gauze (central line dressings are usually covered with Tegaderm after the first few days and gauze it typically removed). In addition, it was in a weird location, I believe changed sides, and was a double lumen placed in a place that they’ve are typically not (if I remember correctly).

She also claims to have a pacemaker, but doesn’t have the typical pacemaker scar, especially not for someone with vEDS (again, she won’t answer the genetic test question which leads me to believe that she hasn’t and therefore does not have vEDS, since if you’re at risk for vEDS you get tested ASAP). No one in her family has EDS (her mum died of cancer, but had no signs of anything but autoimmune diseases), and she definitely doesn’t have vEDS in her family. Spontaneous mutation of vEDS is rare enough as is, let alone in someone with a bunch of other stuff.

There are a lot of things that’s really don’t line up with her and she doesn’t try to prove stuff when people call her out, but instead call them ableist and jump down their throats about them being mean and ABUSING her kek

No. 391184

>>391168
she also has a gofuxkme for “service dog and medical needs” → she faked having a service dog at one point, and she is on Medicaid so she shouldn’t have medical costs except for medication (she claims she needs to patch for PICC supplies, O2 supplies, etc), right?

http://gofundme.com/servicedog-needs

No. 391186

>>391183
>>391168

I found the post! The original account where it was posted has been deleted, but I found it on heartfilledmind’s (someone who is probably also a munchie based on her posts, if not very OTT but that’s for another day) page.

http://heartfilledminds.tumblr.com/post/130599038044

No. 391195

>>391062
Um, again, that's not how it works. If a lot of formula was spoiled, you probably wouldn't know until you got sick, and the chances of it spoiling are super, super low (like it's all designed to have a long shelf life, survive the apocalypse type of life). That's absolutely disgusting in terms of waste though. Formula is expensive for those of us who aren't made of money like jaquie, even with insurance. You don't just throw it out. And if you can't use it, it's generally understood that you give it to someone or donate it, since some people have to pay for all of theirs. So not only is she being wasteful, she's being incredibly selfish as well.

No. 391197

>>391109
Wow, jaquie has gained enough weight to be pretty much unrecognizable

No. 391198

>>391137
Iv zofran's not that good kek. If you have GP it doesn't make shit food empty out of your stomach fast enough to go from being dependent on a tube to eating fried shit. She must have some really amazing meds kek

No. 391201

>>391197

Yeah, she gained a lot of weight in her face. I'm not sure if it's just how her weight is distributed or if it's purging. Probably both.

No. 391207

Please, for the love of all that is holy, take the Jaquie talk to the new Jaquie thread ( >>>/snow/391202 ).

No one made a thread about her when it was suggested in multiple munchie threads, but here it is. I know I'm not alone when I say that people are getting tired of the general munchie thread being flooded with Jaquie stuff when there are other munchies to talk about…

No. 391209

>>391184

So the service dog isn't really a service dog but she has a gofuckme for it? Plus like you said Medicaid should cover most medical and if she's so ill why not apply for disability? Oh right cuz she's not actually sick and would be turned down.

Is there an attorney anon in the house or an expert in fraud? Just speculation but isn't a gofundme for a service dog who isn't actually a service dog a misuse of TOS?

Sage

No. 391211

File: 1506123522031.png (869.3 KB, 750x1334, IMG_1320.PNG)

So Harlow just randomly popped up in Facebook videos? Uh

No. 391219

>>391209
Not an attorney, but CRJS graduate. Yes, raising funds for something fake is illegal and against GFM’s TOS.

And she doesn’t even have a dog. She claimed she had already gotten her “service dog” (a dog named Mossy) but didn’t post pictures or ever answer questions about it, and then she seemed to forget she even had a service dog. Then the company she was looking into was a free company, then the company was giving her a scholarship. None of it made sense.

No. 391221

>>391211
please move here > >>>/snow/391202

No. 391224

>>391130

Not to spend a lot of time bragging since that kind of thing is frowned upon here, but Claire wineland is one of very few people online with chronic illnesses that I genuinely enjoy watching. She talks about stuff people actually care about instead of giving a constant play by play of her symptoms, (even though she obviously is in pretty bad shape physically) and she's actually an interesting person apart from her CF. without all the spoonie crap. It's pretty great.

sage for odd outburst of positivity

No. 391226

>>391074
Absolutely not.
That's an outrageous BS response to one bag of TPN.
Tpn is a slow process much like tube feeds sometimes even slower depending on the situation..and of course it's much more dangerous than feeding tube so refeeding syndrome is one issue, fluid over load another, adverse reactions to something inside the TPN mix (which is pretty uncommon but it happens and the simply use a different formulation if even needed) over feeding can be a big issue especially if it's a fucktard like jaquie. And the fact she only got in IP and for a single night is stupid..hospitals usually do TPN 24hr..specially if you've never had it before.
The key is she had it one time while in the hospital. She obviously did not need it. Do we even know if it was actually TPN? It could very well have been PPN, which is similar to TPN but can be given through an IV it's like a banana bag with a bit of added dex5/10
Since she takes banana bags currently my guess is more towards it being rhat.

No. 391227

>>391130
This! is the thing that bothers me most about jacquie and her "fans".. Telling her how she's so inspiring, which she's not. She have given up on life basically, doesn't do anything and refuses to do anything good for herself. All her treatments are things that makes her look sicker. POTS out of control? wheelchair! Stomach problems? Tube!
I might be wrong, but i think she knows that changing her diet and getting some exercise will not give her any spoonie points.

Sage for just ranting

No. 391229

>>391207

Didn't see this before posting..sorry..and I agree.
Thank you to whoever made it!

No. 391230

>>391130
Please move the Jaq conversation here > >>>/snow/391212

>>391207
You’re welcome (:

No. 391236


No. 391247

>>391236
Oops, yes, sorry, I typed 1 instead of 0 :|

No. 391282

>>391224

Claire is great, she always manages to convey some universal message even when talking about her experiences with CF. I’ve just found her new YT and I think it’s a shame how they screwed her with the old one, but I’m looking forward to what she has to say now. Highly recommended.


I don't understand how munchies would inspire anybody. Let's say that a person learns they have GP and they need to make lifestyle changes. They go searching for tips or whatever and they find some munchies vlog and she's in a goddamn custom wheelchair talking about TPN. I'd be terrified! It pisses me off that they may actually make people worry about themselves/their loved ones.

Sage for ranting ugh

No. 391297

this thread'll be empty. The only entertaining munchies besides jaq are endlessvoices, jonzie, carmel, and maybe a few others that I can't remember. Jonie and carmel are hiding and endlessvoices is is slow as fuck. shes ridiculous but the milk is sparse. There is a milk famine.

No. 391299

>>391297
There were a few others that have been discussed here lately. Although our top cows aren’t providing milk, we have some other cows that are providing some.

No. 391324

>>391297

Aubreys.lyme.journey is great. She's esperocally happy as she's just had surgery and she's getting her toob back.

No. 391325

File: 1506142065476.png (1.16 MB, 1536x2048, IMG_3202.PNG)

>>391324
Never misses an opportunity to show off her port. She wears low cut tops all the damn time. So munchie.

No. 391326

File: 1506142376173.png (276.88 KB, 1536x2048, IMG_3203.PNG)

Medfags - "toxins attached to my DNA" and "toxins blocking my mitochondria" - is that all woo woo bollocks?

No. 391329

File: 1506142594944.png (270.84 KB, 1536x2048, IMG_3204.PNG)

Finally, a doctor says what the entire world can see….!

No. 391330

File: 1506142633106.png (1008.35 KB, 1536x2048, IMG_3205.PNG)


No. 391377

>>391184
>i was recently hospitalized for a major flare of costochondritis (inflammation of the cartilage that connects a rib to the breastbone) it caused sever chest pain and breathing problems

reeeee you don't need to take up a hospital bed for that you just pop a fucking ibuprofen you munchie bitch reeeeeeeeee

No. 391392

>>391377
If you know what it is, it's definitely OTT. However, if you don't know the cause and tell your doctor you have chest pains, that's pretty much a guaranteed ticket to A&E.

Other than that, she's a munchie of course. Pretty much a prototype of MBI which I find interesting. Mostly because most of the people we discuss here seem to be more "some genuine problems but very OTT" or "real problems mixed in with munchieness (i.e. exaggeration and/or very bad self-management of symptoms)" or even actually facitious disorder type patients. Most of them seem to actually get their doctors to place a tube/port/picc/etc. But faking a central line is.. well, different. I can't determine whether I think that's worse or kind of the opposite. If you are faking it online, you KNOW what you are doing. If you are exaggerating symptoms and get your doctor to place one, I think you can still somehow dilude yourself by telling yourself that if you didn't actually have something wrong with you, the doctor wouldn't have placed it. I think it would be easier to somehow convince yourself you are actually sick if you feign symptoms in real life.

Take a wheelchair, for example. If you sit in it and never walk, you can tell yourself you can't walk. If you only sit in it for pictures and when certain people visit, you can't convince yourself you actually need it. You have to be more self-aware, somehow. On the other hand, I'd be easier to tell yourself you are not hurting anyone if your factitious behaviour only takes place online.

Saged for psych/thinkingoutloud-fagging.

No. 391405

File: 1506163664190.png (1.62 MB, 750x1334, IMG_6519.PNG)

Dani has had the smart pill receiver for a couple of days now but can't remember what the recorder will show when the pill is done? And shows the log with no info written down (could be on a different page or else she plans to just make stuff up).
I have no idea how long the test typically takes but it seems like she could be exaggerating how long it's taking and is now worried about what the recorder says when the pill passes because she realizes that if it is able to not when it passes (I know nothing about the test so correct me if I am wrong) then she can't really pretend to the doctors that the pill is taking a while to pass.
Also think that the whole I am in super pain and have a cold is an excuse to take medicine that she knows could alter the test.
And now she is "keeping down some solids" just fine apparently

No. 391407

>>391405
She won't be able to alter the test because the results are sent wirelessly to the doctor's office.

The doctor should just give her a fucking tube and let her deal with the constant diarrhea and pain that goes with it. Let her suffer if she wants one so bad.

No. 391418

>>391407
Why is that, exactly? I don't know anything about that test, but what would happen if she took meds that slow down your GI system?



Another question, but has anyone noticed how these munchies, I mean: spoonies always talk about "succesful doctors appointments". And if they say that, you pretty much know they got a new prescription and/or orders for more tests or new treatment?

I don't think I have ever refered to a doctor's appointment as 'succesfull'. Although I might if the outcome would be something like being able to stop certain meds, or discussing that I'm doing so well that we can now stop treatment X. OR maybe if I was treated during that appointment and the treatment had immediate results. But I still don't think I'd call it "successful". I'd be more like "that was worth the effort". I would call the treatment succesful, in that case.

(Also, I don't want to nit-pick the words someone uses to describe what they feel. And if someone I knew would use that word if they got a new script for something they were expecting to work I wouldn't mind.. It's just an interesting pattern I'm seeing here.)

No. 391424

>>391418
I agree that it's weird to call an appointment successful unless you're having some sort of procedure done. Saying a checkup went well isn't so out of the ordinary, though.

No. 391428

File: 1506170226284.jpeg (475.34 KB, 750x1183, 49F3DEB1-0AD9-4A3A-8930-E0256A…)

Carmel Apples?

Are you fucking kidding me?

No. 391434

File: 1506172599721.jpeg (560.59 KB, 750x1098, 8ABED0A7-09A0-4C01-8B79-5AFCF5…)

Guys quick! Chloe is dying literally and needs more money for life saving treatment in a country where healthcare is free!!

No. 391437

>>391418

I don't know much about the test. I assume that if the information is sent wirelessly then she can't alter the test by claiming that more time elapsed before the pill came out then it actually did (e.g. pill comes out in a day and a half and she claims it took 3-4. random example since I know nothing about how long it should take). However, I would assume she could still impact the test by taking medications that are known to slow the GI system and not reporting it to the doctors.
I just thought that se has asking what the recorder would show when the pill passed because she wants to claim it took longer than it did but is worried that the recorder will not support her self report. I also doubt that in addition to the doctor telling her, she also probably got any important information written down (that log book is on page 9 - there is probably information about test instructions - including the stopping of the test provided). She just wants to believe that the test is going to show that she has super severe GP.

No. 391438

File: 1506173539880.png (142.93 KB, 750x1079, IMG_6520.PNG)

I call major BS on this one. No therapist in their right mind would go outside their scope of practice to tell a patient diet recommendations that are contradictory to diet recommendations given by a specialist. Especially not to someone who has been in "recovery" for two years. Plus forcing herself to eat solids that would make her sick would be less beneficial then making a liquid diet work (where she could presumably meet all her nutrional needs). No therapist would bring that liability onto themselves.

No. 391452

>>391434
ill bet all my money she changed the name because shekels werent rolling in.

>>391418
its really suspect when munchies get over excited about 'successful' appointments because on the flip side, they spit pure vitriol when a dr even comes close to making suggestions that they may not be suffering from what they want to believe. >>391329 thats the fastest example i could pull, notice its all love and friendship bracelets when a dr gives them their highly invasive and risky operations but when one suggests other things to try beforehand or can see the holes in their make believe life, its like their uneducated purposely spiteful and totally personally attacking them.

its disgusting and completely disrespectful to people who become drs.

No. 391459

>>391452
Yup. Seen Janieces vid from yesterday? (https://www.youtube.com/watch?v=kOUxKUoGIwI this one). At 7.30 she talks very briefly about the previous doctor who treated her narcolepsy. She doesn't really say it, but it pretty clear that the doctor suspected a psychgenic component. So, of course, he is "rude", "not a good doctor" and has "a terrible bedside manner".

I will absolutely believe that many doctors are not very good at telling their patients that kind of things in a way that doesn't offend the patient. But that is partly because it is effing HARD to do so. Most patients become very, very defensive when it is even suggested that their symptoms may not be 100% explained by purely biological/medical problems.

No. 391474

An anon just proposed this in the Jaquie thread:

>Question: would it be a good idea to make this thread about Janiece also? Seeing as their vlogs overlap sometimes AND Janiece seems to be quite a bit literal in her 'following' of Jaquie?

No. 391482

>>391418
I feel like appointments can be successful if you’re on the path to feeling better, but that’s just me. I guess it depends how you choose to word stuff or how you see your situation, but I highly agree that munchies use “successful” in a way to describe that they got what they wanted or they were successful in tricking doctors.

No. 391484

>>391474
He he, same anon. That's why I asked it, because - as someone there pointed out - it is hard to discuss Janiece without referencing Jaquie.

But my post >>391459 was relevant to what was discussed before in this thread. So thought it suited this thread, in this case.

No. 391485

>>391484
I should have included Janeice when I made the Jaq thread! I think the other anon in the Jac thread is right: discuss Janeice in either place and we’ll make the second Jac thread a J&J thread ;)

No. 391488

>>391437
Dani is just stupid in her huge ordeal to be sick..sorry for being a bit harsh but it's true..she is not getting away with her issues and she is backing herself into a corner that she will not be able to get out of unless she manages to move out of state and start over..all these records she's building will follow her regardless if she moved across country. If she denied them to share her medical records it raises huge red flags and she will go through everything again if the dr even agreed to treat her..but we do know she will never leave where she is at..so she is really screwing up as the local GIs have already told her no.

It really is a massive red flag she hasn't given any diagnosis for anything other than mild GP of solids only..all the other tests she had and mentioned vaugely would have been on the chart she got her GES screen shot from with the test results and diagnosis (not to mention the dr telling her in her appt) And it wouldn't have just said a ton of acid and some type of bacteria.
with her history and lifestyle id be surprised if she didn't have acid and bacteria (purging will do that to you) it's just surprising she's not constantly bragging about the diagnosis since she just loves having this massive look at me list of conditions.
She will never stick to a liquid diet because she can't and she has no real reason to do so. She gets hungry and wants to eat and so she will.
The way she brings in the ED into all this is so silly..and the more she does the more she screws herself over and she knows that yet continues to do it!
I think she wants to be caught so she can wear a huge badge of glory about having the worst case of anorexia her state has ever
seen.

No. 391509

>>391488
I disagree, I think she knows she can't keep herself from eating, and therefore can't be super sick from anorexia and be the worst anorexic. So instead she's going with a somewhat uncommon gi disorder that will both get her attention and give her an excuse to use eating disorder behaviors.

No. 391513

This is endlessvoices dr at temple. It is one of the seven available motility programs in the states..which makes it so much worse when it comes to wasting resources. But this is also why dani isn't making sense with any of this..unless Parkman is greedy and keeps her for profit which sadly happens but generally in more common fields of medicine because people travel from all over the world to see highly specialized programs.
A smart pill is becoming more and more available to people, so it is not just his research interests and I don't doubt her results will be used in that research..smart pill is normally done in questionable situations and these specialist clinics are learning more about digestive motility and one of interests is reversing the effects of slow motility in malnourished patients. This ranges from eating disorders to elderly to people who have pieces of GI tract removed to medication induced to birth defects to nerve damage to extreme mental illness to handicaps to viruses to gastric bypass patients..its a huge break in tackling this.
And dani is questionable about the true cause and sustainability and most cases are when there is a mental illness and eating disorder history. Which is fine because that can cause GP and the patient usually tries to switch to physical illness only while the largest part is mental illness.
There is nothing wrong with that until they start acting like dani and all the others who have no conscious in what they are stealing from others worse off.
And they are a multi discipline approach (as any big illness) and that includes mental health..
Illness takes a huge toll on people.
Though it seems dani has not been introduced to parkman team which seriously shows something is very fishy. That doesn't happen.



"Dr. Parkman has a professional interest in motility disorders of the esophagus, stomach, small intestine and colon. He also treats conditions such as gastroesophageal reflux disease, achalasia, non-cardiac chest pain, esophageal spasm, gastroparesis, functional dyspepsia, irritable bowel syndrome and intestinal pseudo-obstruction.

Dr. Parkman has a wide-array of research interests including the use of multichannel electrogastrography to assess gastric myoelectrical activity to detect gastric motor function in patients with dyspeptic symptoms as well as development of a noninvasive test to measure simultaneously both gastric emptying and gastric volume after ingestion of a solid meal under physiologic conditions. His work has been published in numerous prestigious publications, such as Gastroenterology, Neurogastroenterology & Motility and Gastroenterology Clinics of North America."

And again….she would have come away with a definite diagnosis with the other tests and posted it like her super special GES..specially when the dr who did the tests know the basic stuff like the back of his hand and more so the complicated stuff.

And yes the smart pill test will record it coming out. She will not be able to lie about that.

Sorry for being so long.

No. 391524

File: 1506187410446.jpg (41.09 KB, 539x361, IMG_9620.JPG)

>>391325

Saged for just I don't freaking know anymore.

No. 391527

>>391509
It absolutely could be, I don't disagree but it is a thought that hasn't really been brought up here.


Before her special GI problems arise she always said she had the worst anorexia the state has seen.. (and she was far from that) but throughout treatment to today she has always talked about her anorexia like-
"I'm on disability for severe chronic anorexia"
and enjoyed throwing it in everyone's faces all the time.
Every little thing was because of her ed..a headache, an itch, dust in her eye.
Even claimed recovery but anorexia was her top illness and despite being healthy she did every thing possible to come across as she is dying from anorexia.
She got knocked down a lot with that in treatment and outpatient treatment..which is why she continued to play it up at home as so severe.. it was this transition that ruffled her feathers as she realized she would be loosing government aid and disability as there was no reason she needed it anymore and she didn't like that..so she played up again, claiming black outs and being so dizzy she couldn't move and just ridiculous crap..she had tilt table done lots of heart tests saw a couple neuros….all came to the same conclusion it wasn't anything wrong
Except for mild migraine here and there and a new eye glass rx.
That eventually led to her relapsing in self harm and purging, she got "stable again" but yet again when time came for no need of assistance she yet again started falling and breaking her bones and hitting herself to try to break bones..shed get an xray and if it wasn't broken she would continue to hit it until she got a broken xray reading..this eventually lead to her now. And being the time when the state starts reviewing stuff, her cycle started over but with special severe GI and resurface of her ED.

When she finally gets caught it'll be awful but I don't think she will mind it at all because she can then claim "look what all my severe chronic anorexia did to my body. Look how sick it made me. I'm lucky to be alive after staring death in the eye so many times."
It's a win win in her mind.

No. 391539

File: 1506187817233.jpg (84.77 KB, 598x750, IMG_9561.JPG)

>>391377
Please excuse my brief blogging rant in advance but I've had pneumopericardium, mediastinum, and pericarditis, and I didn't have to be- no I didn't want to be hospitalized. They gave me indomethicin, pain Meds, and D/Ced me. Sorry for blogging but these dumb bitches and their enabling doctors make me irate!

Saged and about to rip some munchie arse.

No. 391629

>>391539

Yeah, why are munchies obsessed with being in the hospital? Anyone who's ever been hospitalized can tell you they would rather be home. The only people I've heard want to be hospitalized had mental illness to the point their lives were unmanageable and they needed an escape, or they wanted the attention

No. 391630

>>391513
All the tests she has had are ones done by literally all gi doctors. She hasn't done anything special by any means. And surprise, surprise, she was given the same treatment/diet she was originally offered. She refuses to accept that she's not the sickest person with a special spoonie disease.

No. 391719

>>391428
I'd suck this anon's dick for just one caramel apple or just a little peanut butter on one… but no I actually listen. Saged for blogrant but these assholes get the best Tx/ for absolutely no reason and then they go and eat shit foods that will exacerbate the issue, assuming there was one and oh poor you, having to carry around that 2-3 lb backpack good God! Jesus take the while and make them just fuck off for 1 day. Saged uggh with a PS

No. 391746

File: 1506215811546.jpg (22.88 KB, 223x226, IMG_9551.JPG)

>>391629
Anon you couldn't be more spot on. The only people I've ever met and worked with that wanted to be in the hospital were psych patients because they know they needed it and they did. Conversely we have these assholes using resources that real sick people need .

I've had doctors tell me to go to the ER and stayed home and later the Dr called to ask what they said kek so obviously at that point I had to go and that was when I got my first LP! Man it was so much fun kek. I despise being hospitalized and have left AMA many times so I don't get what the obsession is cuz it freaking sucks- as sick as I get I'd rather be at home. The only thing I can think of is that if they're in pt. then "they must be super special munchies and must be really really sick," and of course they must take pictures of everything, because that's what everyone does in the hospital. I can only imagine going to get my next lidocaine infusion and telling the nurse "oh excuse me one second before you put the IV in I just want to take a selfie," kek. Fucking Christ!

Saged and sorry for blogrant but I don't understand why the littlest thing (i.e., "I have double jointed thumbs so I must have EDS etc.,) is automatically catastrophic. Forgive my semi-blog but I'm just so irate right now.

No. 391753

>>391438

Also in the comments she subtly notes that she passed the pill shortly after posting about being tired of carrying the receiver around (which we know she secretly loves - I wouldn't be surprised if she keeps carrying the receiver around until she has to give it back). Claims she is just eating mashed potatoes and oatmeal - we all know she did get a caramel apple and she just won't admit it.

No. 391756

>>391746

The only thing I can figure is that for them, the pleasure of getting attention and spoonie points and building their Instagram spoonie portfolio and feeling special must outweigh the discomfort of being subjected to having a tube shoved in any number of orifices at any given time, being woken up at all hours of the night for vitals and blood draws, and hearing the screams of agony coming from neighboring rooms. These are the only people I know who thrive off of being in the hospital.

No. 391765

>>387658
>>391756

My god hospitals creep me tf out. Emergency admission to two different ones three years apart. The second one I learned I could leave against medical advice, and guess whose ass was out the door. It is not fun listening to the breathing of a dying lady five feet from you.

Which I guess is why so many of these weirdos don't stay in ED for hours or get half housed at the ICU. the docs figure they're stable enough to go to the gastro ward or whatever.

No. 391774

MLS/endlessvoices is different than most munchies talked about on this board. She truly wants to be sick, not just get the attention, sympathy, accessories and all that. She wants the whole package, even the painful parts. She's desperate. She is trying to will her body into having gastroparesis. Bizarre

No. 391776

kek! found Nicole's "acting" profile.

I guess she got sick of trying on talent and went for the sympathy vote.

https://www.castingnow.co.uk/nicole-gray

No. 391779

File: 1506225229001.jpg (65.13 KB, 500x343, 588159fe3580320f71fb751ffa1ea5…)


No. 391780

File: 1506225234845.jpg (1.61 MB, 1080x7161, Screenshot_20170923-225117.jpg)

>>391438

"I have so many doctors it's hard"
Priceless nonsense.

No. 391798

File: 1506232669256.jpg (210.36 KB, 962x787, FB1.jpg)

I found some hugeass munchies in a Hypermobility group on FB. There was a post asking how many conditions ppl had. You can guess how that went…

No. 391799

File: 1506232715408.jpg (256.88 KB, 969x755, FB2.jpg)

Then this one…. I've not covered up the name because I'm almost sure she's been posted in here before. (Is she the one who had sepsis but was apparently discharged anyway?)

No. 391807

>>391799
how the everliving shit does one remember that many diagnoses?

The one that was sent home with supposed sepsis was @Richelle_Elisa from Instagram, but she's in all of these eds groups as well trying to one-up everybody, easy to find based on her Instagram name.

No. 391828

File: 1506245240602.png (801.52 KB, 795x829, Screenshot_2017-09-24-02-23-36…)

>Borderline GP. Suspected EDS. She's looking forward to getting her portacath next month in time for disautonomia awareness month!

No. 391839

>>391828
Kind of sad to see her posted as she seems quite sweet and isn't a big account or trying to milk the suckers for $$$ like many of the worst cows (Jaq, Chloe Leanne and so on). She does have at least an ott vibe, though, I guess.

No. 391840

>>391799

I've seen her around on social media. She loves to compete and her favourite line is "I dislocate 200+ per day". I imagine her sitting and counting and maybe marking it off on some sort of chart. Such bollocks. As if she has 200 proper disclocations every day.

What's with 4 types of headache too? Top kek.

And dysfunctional breathing? Haha!

You can tell the munchies because they actually think a vitamin D deficiency is a condition/diagnosis. She's in the fucking UK - almost all of us are deficient - we don't get enough sun!

No. 391849

>>391840
>>You can tell the munchies because they actually think a vitamin D deficiency is a condition/diagnosis.

Also dry eye. Don't you dare forget that one!

Half of what she mentions is a different way to say something she already mentioned or simply a symptom of it.

It's a bit like saying "I have the flu, a virus, a self-limiting upper airway condition (still undergoing testing for that one), fever, muscle pains, coughing fits, two types of headache, weakness and pain, my throat hurts, daily fatigue, myalgia, malaise, I'm febrile and I'm generally feeling very unwell."

No. 391915

>>391839

No, but her account appears poised to launch into full munchiedom: listing undiagnosed illnesses, calling herself "chronically", using all the hashtags.

No. 391942

>>391840
>>391849
Vit D deficiency can actually be a serious thing….not WKing or trying to nit pick at the comments but I do want to point out that it can be a separate condition in some cases.
These people are probably just on borderline levels or down a point or 2 with their super severe vit D deficiency and a walk around the block would fix the issue but of course that's not what sick people do and why go outside when you can get more pills?
(Screaming inside with these munchies)
Anyway, it played a huge roll in rickets. If you have certain heart issues, if you have a bone issue vit D deficiency will worsen it and it's a rather painful thing to live with…but here is the kicker…you actually have to be sick to claim it..im talking about true and large vit. D deficiencies and I doubt the majority of the people who appear symptom free and appear munchie/OTT actually have it this bad.
If it was they would be given monthly injections in the arse..and I haven't seen them bragging and showing off the jab.

No. 391946

>>391942
I'm pretty sure severe vitamin d deficiency and rickets only occur in very, very rare cases. I've only heard of it recently in children with major disabilities.

No. 391949

>>391799
POTS is a type of dysautonomia, and autonomic failure doesn't happen until middle or old age and is more common in men. Also it has nearly the same symptoms as pots. She's definitely a munchie, or at least super ott

No. 391975

>>391942
idk i can't absorb d-vit through my skin so therefore my d vit levels was close to 0 before it was discovered. I barely had any symptoms

sage for semi blogging

No. 391993

>>391946

I was born with mild rickets.
& like a lot in Northern Europe, have a Vit D deficiency - except I don't now because I take a pill every day. Problem solved!

No. 392019

>>391993

I'm also assuming it's not all over your social media kek. Lots of people have to take vit d supplements, but the cow in reference acts like it's something sooper serious

No. 392021

>>392019

I shoop myself to look ghostly pale and hashtag "D3lyfe" in all my pics

No. 392062

>>391799

The list of munchie Chloe's continues. And that list of conditions is ridiculous. I can't imagine the level of fucked up you need to be to gleefully list a ton of illnesses you're lying about just to feel like ~ the sickest person on the internetz ~ Most of these dumb bitches would be dead if half their story was true.

No. 392068

I have a genuine question for Medfags about the lyme disease munchies.

I don't know much about lyme beyond the basics (deer tick, bullseye rash, long incubation period) but surely a long course of antibiotics would cure it? I've seen posts where people are GoFundMe raising for STEM CELL treatment which just seems totally inappropriate for the type of illness…

Can I get a medfag's take on this?

Saged for OT

No. 392078

>>392062

If I ever have a daughter, I shall be sure to avoid the name Chloe.

Sage for random OT.

No. 392079

>>392021
I would expect nothing less kek. But don't give the munchies any ideas!

No. 392083

>>392078
-Chloe
-Nicole
-Kelly
-Jaquie

Don't forget the other crazy lady names

No. 392086

>>392083

Sophie and Robyn (as twistedchronic warrior is going down the Robyn route pretty much in chronological order….)

No. 392106

>>391488
Dani is seriously bizarre but I'd bet my own nipples that she's got some mild learning/intellectual disability. She comes across like something just stopped developing in her head when she was about 14 and huge chunks of her personality are like, stuck at that stage forever. I obviously don't know shit about disabilities but she does remind me of the couple folks I've known with ABI's.

Can anyone see what she's trying to achieve other than tubes and a pension?

No. 392110

File: 1506295244402.png (1.6 MB, 1044x1899, 20170924_181942.png)


No. 392112

>>392110
Pain at a 9?
Nausea at a 9?
SELFIE TIME!!!

No. 392113

File: 1506295355068.png (1.64 MB, 1041x1959, 20170924_181907.png)


No. 392114

>>392112

Munchie tell no. 24

No. 392116

File: 1506295488286.png (1.53 MB, 1057x2047, 20170924_182344.png)


No. 392117

>>392116

Bitch, no.
If you have a seizure usually you know because someone tells you, until you've had enough to learn the signs (and I'm sure as fuck not telling these munchies what they are). The first few times I had them I assumed I'd just passed out.

No. 392119

File: 1506295913571.png (228.82 KB, 1536x2048, IMG_3208.PNG)

OMG, open tube begging!

No. 392120

I just reported Carmel's GoFuckMe.

No. 392124

>>392119

The daily recommendation is 6g of salt a day and 2.5-3.5 litres of water a day so …. is she ANTI dysautonomic? Or just making herself worse…

No. 392130

>>392106
>bet my own nipples that she's got some mild learning/intellectual disability.

I'd bet mine too, anon. I've never met anyone on disability and medicare for just anorexia, especially when dani was never emaciated. I think she wants people to believe she gets all those benefits (and housing) bc of sooper severe ana, but I'd bet she was diagnosed with a developmental disability before anything else and thats what gets her approved for gov't eligibilities.

No. 392132

>>392119
… that dysautonomia plan is the exact opposite of what any sane doctor would want. What in the actual hell.

Also kek 6 minutes? So oddly specific

No. 392133

File: 1506298980647.png (333.35 KB, 826x609, simplespoonie1.png)

of COURSE she has a service dog (in training)

It's the new must-have Spoonie accessory. Who are you if you don't have one? Obviously not sick!

No. 392134

>>392133

samefag

but KEK! I misread the original post as Border Collie. What the fuck is a Border Terrier going to do when you pass out on the floor? Yap at you?

No. 392138

>>392134

It's going to herd you obvi

No. 392141

>>392138

OMG guyys, this morning my dog herded me into the recovery position while I slept. he must have done cos i woke up on my side! hashtag lifesaver

No. 392143

>>392133

I wonder who has the prestigious title of setting the service dog accessory trend. There was a brief trend of it in the UK after Lucy Watts' SD won some kind of animal MBA or something.

No. 392148

>>392143

It's still hard to get a service dog in the UK because there are few charities that are licensed to train and provide them and waiting lists are long. Any dog not provided by one of these few charities is not a legitimate service dog and has no right to enter any private establishment. Compare this to the "buy a puppy and stick a high vis vest on it" method in the USA. (And don't get me started on emotional support dogs. All dogs are emotional support dogs <3)

No. 392151

>>392124
Up to 10g of salt and 3-4 liters of water if symptoms persist, but why do that when you can wear a diaper and get an awesome feeding tube?!?

No. 392152

>>392132
Yeah most doctors would tell you more salt and more water than that, and much, much more exercise. With pots you're ot supposed to sit down longer than an hour without at least standing up.

No. 392154

>>392152

Yup. It sucks because it makes you feel shitty, but if you don't you'll only feel shittier when you do eventually stand up.

No. 392188

>>392106
>>392130

I suspect that she has at least some sort of mild cognitive delay. She reported at some point that she was the surviving twin of a fairly premature birth (I don't remember exactly how many weeks early but given her age it the survival rate, especially the survival rate without long term complications, would be much lower than it is now). Someone earlier mentioned they thought it was odd that she genuinely seems to want to be sick rather than just want to appear sick. She has mentioned that she was pretty sick growing up and that her parents were a bit over protective. I think her childhood and identity have been built on being sick and being a "survivor". As she got older and some of the more physical problems disappeared she also began to lose her identity - especially since she has seemed to become nobody special (not necessarily good or bad more more of someone who is average/invisible). I think there is a lot more mental health issues going on than she admits to (we know she used to self harm). She focuses on the ana because that is the mental health issue that gets you more social media points and is one that more people can connect to physical illness. I think the underlying mental illness is the problem but she needs something more physical to validate and help other see how she feels (there are a lot of mental illnesses that can have physical symptoms that make you feel like crap but there is more stigma around other mental illnesses and more of an attitude of "just get over it" which isn't always possible). I won't begin to guess what those issues are, but until she starts to focus on them, she has little chance of ever moving on and having a chance of a "normal" life.
I don't know a ton about government assistance and I know she gets disability benefits but I suspect its more for other mental health issues but some of the assistance she receives is also probably due to having no income (like I would guess that even if she wasn't on disability she would still qualify for Medicaid due to her income). Being on disability provides her with a little bit extra money and she probably doesn't want to lose it because it would be really hard to get by without it (and would probably require her getting a minimum wage job where she would have to work pretty hard to barely scrape by).
I just wish she would be honest with herself and her therapist/doctors about the true nature of her illness (the mental health side). She has the potential to live a decent life but she needs to get at those underlying issues and start working on finding her identity outside of being a "sick" person.

No. 392202

>>392106
I've gotten that impression, too. The thing that confuses me is her lack punctuation. She never goes back over to read what she wrote to make it relatively easier to read. It's almost as if she purposely types that way to seem anxious and rushes for s1ck p01nts
It just annoys me and doesn't make me think she's extra special. I dont know if that is a learning disability she has or not. But her typing style makes me want to rip my hair out (maybe im overreacting on this, but its just so annoying to me).

No. 392203

>>392202

I feel the same way too, and my thesis was on how spelling and grammar don't matter as long as the intended message can be inferred kek

No. 392206

>>392119
2g is roughly what normal people are supposed to consume. Unless she means adding 2 extra grams of salt her doctor is just humoring her (and racking in the dough). Or just an idiot.
No POTS patient would be recommended to eat so little salt. She didnt say POTS but id assume thats what she's talking about. dysautonomia sound more extreme and serious, so of course she'll say POTS.
Same with the 1-2 liters of water. This whole post is a mess.

No. 392207

>>392206

POTS is one of the many things that can occur if a patient has dysautonomia (though it can occur on its own too). What annoys me is lots of these munchies are conflating low BP with POTS, but the clue is in the name - ORTHOSTATIC TACHYCARDIA.

Funny how they never go on about the endless sweating….

No. 392209

>>392202

I think part of her terrible writing is that she primarily types on her phone. However, I have no idea why she doesn't go back to read what she writes and make at least some attempt at fixing the horrible autocorrect errors before she posts because sometimes it is really difficult to figure out what she is trying to say. Even though I think she has some sort of cognitive delay (but I would assume she passed through school with maybe a little assistance for a learning disability - not something that would seriously impact her ability to perform basic functions), I do think she is with it enough to be able to fix some of the major mistakes. It seems more like laziness or maybe poor impulse control.

No. 392215

>>392207
You don't necessarily sweat. Some patients sweat incessantly. Others lose their ability to sweat at all.

No. 392219

>>392207
Endless sweating? Lol. A lot of people with dysautonomia don’t sweat, which is where a lot of the body temp regulations come from.

No. 392225

>>392133

Basically the trend is to get a friggin pet and turn it into a medical accessory, complete with a separate Instagram account with captions written in first person about "my girl"! It's just another way of taking something normal and turning it into something clinical. Please respect my service goldfish, he alerts to let me know when I need to go to the bathroom. Follow him on Instagram at @oscar_helper_fish.

No. 392226

>>392225

Now all your fish needs is a giant tabard reading DO NOT PET ME which will of course bring people over to read the sign so you can post an angry vlog about how people are disrespecting your service fish.

No. 392230

>>392225
This trend probably started because a lot of credible service dog training facilities encourage their handlers to keep progress reports / documentation of the dog, often through IG or blogs. But of course munchies had to hop on board with their self trained “service dogs”. Because everyone is completely competent to train a working dog, especially when they’re sooper sick /sarcasm/

No. 392236

>>392207
It's actually just one out of many types of dysautonomia. There's eleven? different diseases that fall under the umbrella of dysautonomia, and they all have similar but slightly different symptoms, except a couple that are pretty different

No. 392238

File: 1506314901075.jpg (73.37 KB, 480x476, IMG_0986.JPG)

>>392236
I was wrong, there's actually nine types.

No. 392240

>>392238

Oooh useful pic, thanks!
I don't know a whole lot about it tbh. I see a cardiologist for the POTS part and the other stuff isn't as troubling to me.

No. 392241

>>392238
MSA is fatal, my friend's dad died from it. I hate all these spoonies going on about having pots and how it's the worst thing ever. It's not, because its manageable and isn't going to kill you.

No. 392242

>>392240
You don't usually get more than one type, anyone with pots almost always just has pots, since they're all separate illnesses

No. 392244

>>392242
Dysautonomia is the wide term for any dysfunction of the nervous system. You only get one type.

No. 392245

>>392244
oops *only the dysfunction of the autonomic nervous system

No. 392247

>>392244

I thought people could have POTS but other symptoms like poor temperature control/heat intolerance etc. Granted I may have been reading too many descriptions off instagram photos…

No. 392252

>>392247
Those are all pots symptoms, pots has a lot. But they're separate disorders, even though there's some symptom overlap. PANDAS causes psychiatric problems in children, and MSA makes you progressively lose all function, including walking, eating, breathing, and your heart function, and then you die. Total automatic failure almost always occurs in middle age men.

No. 392253

>>392252

Thanks. I guess POTS just has a very misleading name…. (I'd assumed it was ONLY the tachycardia!)

No. 392254

>>392253
No problem. Pots has tons of symptoms besides the orthostatic tachycardia, including temperature control, sweating, headaches, fatigue, dizziness, and more. It doesn't help that spoonies/munchies always seem to list pots and dysautonomia on IG, to make their illness sound more serious.

No. 392263

I've found pots is popular with munchies specially ones who have an eating disorder. ..as with an ED and while recovering from an ED, symptoms match pots very closely..and the majority of that population doesn't have those symptoms once healthier.. just like a gastric delay (imagine that!)
Granted some ED patients truly have pots, no doubt.
It's just ridiculous..its like saying you have super severe dumping syndrome that is killing you after you eat at taco bell once.

No. 392264

>>392244
This is WRONG. It is very possible to have more than one type of dysautonomia. When your ANS is malfunctioning, it can malfunction in many ways. NCS is found in a large portion of the population, and this comes with many other dysautonomias. POTS and OI can happen together since POTS is “orthostatic tachycardia in the absence of orthostatic hypotension” and OI can happen after 15+ minutes after standing (the threshold for POTS symptoms to start disappearing).

I like this site for SPECULATING who the munchies are, but between shit like “you would have rickets if you have actual vit D deficiency” (bruhs, it’s possible to be at like 6 – typical for Americans is 30-50 – and be asymptomatic [I’m living proof that it happens]), “you can’t do X with EDS” (um, spectrum disorder?!), and other things people like to state as fact when they are misguided beliefs is really fricking annoying.

sage for fact check rage and medfagging

No. 392288

File: 1506330066190.jpg (87.27 KB, 640x920, IMG_9554.JPG)

>>392116
You think you had a seizure? Was this like one of Kati's near seizures, near heart attacks, and/or near strokes?

I've only had 1 seizure in my life (a rxn to a med while in the hospital) and not only do I remember it but I can basically describe everything that happened. There was no if. It was obvious to the nurses, Dr's, and myself what was going on; they weren't standing around wondering, "I'm not sure here. is she actually seizing or is this one of this totally common "near seizures" we've been hearing so much about lately," kek? Jesus take the wheel and may the Gods at lolcow forgive my blogrant? Thank you benevolent lolcow Gods for accepting my Saged apology.

No. 392290

MTHFR deficiency, which they abbreviate as MTHFR (gah pet peeve!) and stands for methylenetetrahydrofolate reductase deficiency rather than the obvious reading, is insanely rare. There is an international registry, just about every lab in the Western world that can test for MTHFR deficiency submits cases, and they have less than 80 cases so far. So excuse me while I'm a little suspicious when every third spoonie lists MTHFR deficiency…

No. 392291

>>392288

The 'I might have had a seizure' thing happens sometimes to well medicated epileptics who have absence seizures. They might have very short seizures with zero postictal symptoms. As opposed to proper big ass seizures, which you might not remember but the postictal period sure will be memorable.

No. 392292

>>392264

Not sure POTS and OI aren't mutually exclusive diagnoses. I'm not a cardiologist or ANS neurospecialist, but as far as I'm aware, POTS supervenes an OI dx. Might just be national practice but I have never seen both together. POTS is seen as a form of OI accompanied by a specific tachycardic response.

No. 392293

>>392124

It may be part of a gradual increase programme of fluids and saline, and or supplemented by IV saline. But yeah, that's not gonna fix shit.

No. 392296

>>392293
I've don't know any reason to go slow, but maybe. Most doctors will tell you min. 2,5 liters of fluid (not all water since that will flush out the salts) and salt supplements
Also exercise as much as possible, safely

No. 392299

>>392296

Even healthy people should be drinking more than a 1L per day. That IGer is full of crap, just look through her posts. Ugh.

No. 392301

There's a school of thought that says MANY POTS patients are simply decondtioned and it's not actually a dysautonomnia in these cases. This explains why many eating disordered patients have symptoms and get a diagnosis. Of course, this upsets the munchies who like their ports and wheelchairs. It's far more upsetting to be told to go away and drink more water, eat more salt and enter into a graded exercise programme. You don't get spoonie points for that sort of thing.

No. 392303

File: 1506334348236.jpg (192.63 KB, 424x303, endolie.jpg)

- got Endo after her first period
- started googling her symptoms and found informations about Endo
- went to 5 gynecologists and after 13 years she has the Endo diagnosis thanks to getting an ultrasound

No further mention of the lumps in her left breasts after getting a mammography. Claims that they tested several medications for her Endo even though she only started seeing the doctor this year. She never mentioned where the growth actually is and I think this is really suspicious.
I know that Endo pain has nothing to do with normal period pain, but how can you be so sure that you have Endo for 13 years? She's so focused on this number and she keeps mentioning it.

No further mention of the CRPS and normally she brags about every procedure and pill.

No. 392309

>>392303

Endometriosis cannot be diagnosed by ultrasound or any other type of scan. Endo can be suspected by ruling out other causes of pelvic pain which would appear on a scan, but the diagnosis must be confirmed by laparoscopy.

No. 392321

>>392290
Single MTHFR mutation that can cause deficiency is in like 15% of the general population and higher in many genetic disorders for some odd reason, so not that rare. Just because people aren’t listed on your fave directory doesn’t mean others don’t have it kek

No. 392322

>>392292
OI is technically a term for ortho hypotension, and does not include tachycardia. POTS and OI are distinctly separate.

saged for medfagging

No. 392324

>>392321

By single, you mean homozygous? I was strictly referring to mutations that lead to clinically significant (<20%) MTHFR activity. It is insanely rare, while merely mildly reduced MTHFR activity does NOT have the same devastating symptoms as clinically significant full MTHFR deficiency. In other words, if someone claims symptomatic MTHFR deficiency, especially if they do so w/o identifying the polymorphism, they're either lying or their condition is trivial and probably an incidental finding.

No. 392325

>>392322

Agreed, but surely someone with OI who has hypotension would be diagnosed as POTS rather than OI?

No. 392327

>>392325
Saged for blogging but I have POTS w/hypotension that was dx as POTS & NMHS (neurally mediated hypotension syndrome). Granted, the dr at the hospital I was tested at was a bit of an ass so I wouldn't be surprised if he fucked that
up….

No. 392329

>>392309
they never ruled out other causes.
She also has Colitits and claims that it's only active when she takes cortisone.
It bugs me that she always writes "I have endo for 13 years now". She never had the laparoscopy, so maybe it's not endo. Maybe it's just colitis.

No. 392361

>>392329

Wait, doggydoggywhaaaaat to quote Mr. Peanutbutter. Colitis that flares when taking the mainstay treatment for colitis? Wtfffffffff.

No. 392378


No. 392379

>>392327
Probably just the pots, as nms has the fainting like pots, but pots includes more symptoms, not just hypotension and fainting

No. 392388

>>388727
They said they WILL wk because they're a friend… reading comprehension pal. But yeah it is kind of odd that there would happen to be a friend on here idk

No. 392398

>>392325
No. They are distinct pathologies. By definition, POTS requires the presence of an increase in heart rate by at least 30 bpm within 10 minutes of standing. Hypotension is not part of the POTS diagnosis.

/medfag

No. 392399

>>391048
That's totally not true though… a person can become malnourished without losing weight, heck sometimes while gaining weight. If you're constantly eating shit junk food it is quite likely that over time your body is not going to get the nutrients it needs, so despite absorbing energy and increasing mass, you're not actually getting proper vitamins etc. Or some people perhaps do eat a decent diet but their body doesn't absorb certain vitamins properly, but it doesn't absorb the energy thus they maintain their weight but without proper nutrients. Weight can be an indicator of malnutrition of course but it certainly isn't a necessary symptom

No. 392410

>>392398
True, but it is still included within the possible pots symptoms. Just not everyone has every possible symptom, so it is possible to have pots without hypotension

No. 392540


No. 392544

I know a few people diagnosed with POTS and so am I. Most of us have OI, but we're not diagnosed with both, just POTS. Maybe doctors don't see it as necessary since they're already treating you so they focus on helping instead of adding to your diagnostic list. Diagnosis don't really matter as long as you get the help you need.

No. 392546

>>392540

K, I feel really fucking unwell after reading that bullshit (and the comments, jeez) who's going to follow my instagram? I'll be needing that sweet government payout for how her facebook has made me suffer.

On one of the comments she started listing people also affected… She literally said she knew three people who had died of their "injuries" and then concluded by saying she was affected worst of all! Wow.

No. 392547

Haven't seen anything posted about Carmel in a long time? Did she get her precious toob yet?

No. 392550

>>392547 i heard she stopped posting. she blocked me so i dont know for certain, but thats what someone said

No. 392551

>>392540

Oh my God the stupidity has rendered me physically speechless. She's claiming having caught EDS from the human DNA in a vaccine? Along with a pic of her tiny flat stomach and toobs.

Caught a genetic condition from vaccines that apparently contain human DNA with the ability to overwrite your own genes… so she needs ££££ for IVIG and stem cell therapy that aren't even treatments for hEDS.

The mind literally boggles.

No. 392552

>>392551
Wait, WHERE on that site does she say that? I can't find it.

No. 392553

>>392551

Someone asked why she has to pay for treatment and she said it was because she "wasn't born sick".
Like not even "because teh establishment don't believe the vaccine did it" or "they're in the pocket of big pharma". Which would all be just as much nonsense but at least might be believable if you had managed to swallow the rest of what she's saying.
But no. The NHS never treats anyone with an acquired illness or who gets hit by a bus or who drinks too much or gets pregnant or is just old.

No. 392554

File: 1506376846497.png (Spoiler Image, 243.78 KB, 1136x640, IMG_4573.PNG)

>>392552

Some guy who's a specialist in ME…and EDS….and vaccine injury….claimed this.

No. 392557

>>392554
She needs intensive treatment for her personality disorder. People like her who prey on others for money and emotional/narcissistic supply are the real bottom feeders of the spoonie #community.

No. 392562

>>392554
If you get a massive blood transfusion while pregnant, it can alter your baby's DNA. If the father requests a DNA test, you will be in big trouble because the DNA of the baby is so altered it will come out as not his child even if biologically speaking it was before. If you received enough transfusions, you could even alter the child's race! It happened to my child. Think I could start a crowdfunding source for this science since everyone else has?

Sage for contributing nothing but stupidity!

No. 392566

>>392554
>They can't work out why - if she has EDS - it took so long for the symptoms (i.e. dislocations) to become prominent.

Hate to burst her bubble, but it is VERY common, especially for females, for HEDS symptoms to become disabling during or just after puberty. Although I have to say, almost all of not all patients I've known for whom that happened, had SOME symptoms in childhood. It was just they didn't think much of it, or they/their doctors never thought to connect the frequently sprained ankles with the painful clicking jaw and the hernias they had as a child.

Still, if she goes by "I've always had it, it just started to become symptomatic only recently" then there is NOTHING mysterious about that. Of course I don't believe she has it, but IF she would, it would hardly be strange that her joints suddenly becmame more problematic after she became bedridden and her muscles atrofied.

If on the other hand she goes with the theory "human DNA in the vaccin gave it to me" she's crazier than we thought.

Also: respiratory difficulties or NOT a symptom of HEDS.

No. 392567

>>392551
Don't forget the part where she whines that people who actually have EDS are just being SOOooOo mean to her!

No. 392571

>>392540

I'm raging.

How dare she say the flu vaccine is not safe for immunocompromised people? That's dangerous "advice". Immunosuppressed people are at more risk of dying from flu than a vaccine injury.

How dare she when there may be impressionable young people reading that? With any luck, it'll only be the people who pretend they have a suppressed immune system because they don't know what it actually means. She doesn't have a diagnosed immunodeficiency, she's not on drugs that are considered "immunosuppressive" - so why is she even passing comment? I know it's munchie cool to say you have an immune system problem but top kek, most of them don't.

Vaccinate. Don't vaccine. I don't give a shit if you're an adult. Getting sick or dying from a preventable disease is your choice. Although my taxes pay for it when you need medical treatment but whatever. Just don't spew pseudoscience on your page in case someone who has a real immunodeficiency thinks it's correct and makes a decision that's harmful.

No. 392572

>>392554

I'd love to know the name of this sooper speshul doctor.

No. 392574

File: 1506378840437.jpg (158.95 KB, 1325x640, IMG_3213.JPG)

41 utter twats liked this post. 4 of them found it funny. I suspect their collective IQ is not much higher than 41.I hope none of them get flu, need treatment and waste precious NHS precious resources that I work hard to pay taxes for.

(More than happy to pay tax to ensure genuinely ill people get excellent treatment, of course. I also know there's a small section of people who can't get the vaccine and we should also protect them by not being arseholes and getting vaccinated if we can.)

No. 392577

IVIG is very strictly rationed in the UK for good reason. Being able to pay for it by scrounging off others is not acceptable. Kids with cancer need - actually clinically need - this to LIVE.

No. 392594

>>392574
She's a monster. Utterly sickening.

No. 392599

>>392574

Joke'll be on her when she catches the flu and gets pneumonia as her lungs are weak from deconditioning.

No. 392600

I'm just waiting for one of these munchie fucks to decide they have Morgellon's, then see how many others jump on the bandwagon. Kek

No. 392607

Did anyone else notice that MyBlondeVoyage was miraculously well enough to go on a night out on her birthday? How convenient that timing was!
(Sorry I didn't think to screencap her story. It was in a bar. Not a vogmask in sight.)

No. 392608

>>392574

It never ceases to amaze me how far Chloe's gone to cover up laziness and an eating disorder.

No. 392609

File: 1506383427783.jpeg (508.62 KB, 740x1014, CABD76DE-CC2E-42A9-B480-013643…)

>>392547

Posted yesterday.

No. 392611

>>392607

That's the best part of being a munchie: getting to be conveniently ill. They're never too sick to have fun or show off, but any hint of adult responsibility and they're suddenly dying.

No. 392614

>>392609

So Carmel's doctor shopped enough to find one that believes her bs? Along with a ridiculous amount of emojis and complaining about simple treatments.

No. 392623

How old is TwistedChronicWarrior? She's in her 20s right? Because her MUM is posting on her behalf on FB in her ridiculous Spoonie Squares group. (I have knitted things like those too, they're called coasters.)

https://www.facebook.com/groups/262803930869711/

No. 392629

>>392623
I am going to be sorry I asked…I just know it…but what does one do with a spoonie square?

>>392611
And again, I'm going to be sorry I asked, but I can't find anything about a stem cell transplant for vaccine injury in the U.S.

Chloe writes, "I will need to be overseas where they use cutting edge technology."

I am guessing she means she'll go to one of the stem cell shops in the US that the US FDA sort of ignores?

Poor UK physicians. Had to learn all those backward evidence-based medical practices that med schools like to teach, while using all that outdated tech, of course…

No. 392650

there's munchies/OTTs getting off because they love the drama and attention and oh poor ickle me, etc….

then there's absolutely mentally sick people like Chloe Leanne and this vaccine bs who are pretty much conning people out of money with their lies and media attention. what's SO infuriating is anyone analysing the situation could TELL it's all lies but no, these sick fucks get both that sweet attention and even sweeter dollar that could be given to someone who really needs it.

sage for pissed off

No. 392652

>>392629
Stem cell treatments are very difficult to get here for anything other than very specific reasons. Most intelligent people here don't recognize vaccines injury (since it's never been concretely proven to exist), so I doubt it's an app or use. With stem cells it usually has to be approved by the doctor, the insurance company, and the hospital's ethics committee and board of directors. I know it's usually done here for cancers and neurological damage, like cp and spinal cord injury, but isn't approved for much else.

No. 392654

>>392629

I think you just have it. There's no purpose to it whatsoever. Except having a special wittle giftie for being such a bwave wittle soldier.

No. 392656

>>392652

Nonetheless, Chloe and multiple others have GFM pages begging for money for this miracle treatment so they can carry on being anorexic while the cash rolls in.

No. 392662

File: 1506389581829.jpg (232.93 KB, 1290x1457, Misstery1.jpg)

Munchie tell: a simple procedure performed with local anaesthetic is referred to as an operation.

No. 392663

>>392656
Chloe Leanne is so damn determined that she wants to be the worst and keep up the (ridiculous, literally unbelievable) drama at all times. The Breakspear crowd in the U.K. are bad enough and most seem to have gofuckmes even though Breakspear really seems to function more as a supported social unit with IVs.

What makes Chloe worse is how she actively lies and misleads, to the point that she could legit harm people who really are ill if they're stupid enough to listen to her - and will definitely contribute to a general lack of understanding of how medicine, heds, vaccines and so on work. She's the British Jaq, imo. Not trying to stir up an army or anything, I know it's against the rules to intervene in a cow's life, but I've been wondering if there's any way to get her pages taken down or examined for fraud. So far I don't think she's technically broken the law, but ethically she's a clusterfuck.

No. 392664

>>392663

Try reporting her fundraising pages if she has any? I did that to Carmel's as any funder with no specific goals or transparency about where the money will go is dodgy as fuck. I have happily donated to medical fundraisers before, but if they lack those things I see red flags.

No. 392681

>>392663
I tried to report her weird facebook page, but it said "would you like to block her or hide her posts?" But nothing about reporting even tho i specifically chose "this person is scamming" when asked why im requesting her profile to be looked at.

No. 392759

File: 1506411680728.jpeg (525.83 KB, 750x1007, 60F4087F-1457-469E-82CA-D4CAEF…)

Can we just jump back to the fact she GENERAL FUCKING ANESETHISA FOR A MIRAINA?!?!

Why?! Just why?! Because her sooper speeshul EDS made her so at risk for a minor procedure!!!

No. 392761

>>392759
It's pretty common in Australia to be given a general for the mirena. That's how I was given mine, wasn't given any other options to get it done.

Saged for kind of blog

No. 392799

>>392759
Are you fucking kidding me? Under GENERAL? bitch when I had that awful thing put in me when I still had it, you were LUCKY if the Dr. gave you a couple Norco. Mine just had me take some Advil afterwards. Yeah it sucks and yeah it hurts but fuck me it's not THAT bad.

No. 392812

>>392761

Okay maybe common, but she's still being OTT about a completely simple procedure.

Also when did this bitch get a lactose breath test.

No. 392815

>>392799
Bitch please.

Right now you are coming off as big a cow as them.

Back off, breathe, and deal with it.

OMG Life is so unfair.

No. 392816

Dani/MLS/endlessvoices is claiming to be taking an IG break. While this could be a reaction to the stuff that has been posted on here about her recently (and the fact that the majority of her comments these days are questioning her choices), I get a bit suspicious that she always seems to decide to take a break prior to getting test results. Almost as if she is afraid they will come back normal and someone will ask about them. If they come back with the slightest little thing wrong she will be sure to update everyone and make it seem super serious but on the chance it comes back normal, I think she hopes she can just disappear for a while and people will forget about it.
But don't worry she will be continuing to post horrendously dull blogs where she continues to do nothing and talk about how much pain she is in. Somehow she never seems to look like she is in pain.

No. 392840

File: 1506433152493.jpg (1010.66 KB, 787x2226, Screenshot_20170925-223946.jpg)

Kek. Maybe because you don't need the accommodations.

No. 392841

File: 1506433205078.jpg (669.21 KB, 1036x1373, Screenshot_20170925-224158.jpg)


No. 392849

>>392840
None of these people have ever heard of compression!!!!! It really will help with the fainting! It is uncomfortable, but so is passing out! It doesn't give you points because no one sees it. It does however make you look better and people notice. I guess that's why. If my POTS disappeared, I would still wear it for the shapewear factor alone.
Sage for self blogging

No. 392881

File: 1506437045596.jpg (712.96 KB, 1064x1591, Screenshot_20170926-092341.jpg)


No. 392893

>>392840
How oblivious and entitled do you actually have to be to get enraged that they require documentation of the medical condition? That much is a given and should be simple if you actually have said condition.

No. 392900

>>392840
Omg she's in high school??? She looks like she's 40. And that's how IEPs work. No documentation, no services, accommodations, or modifications. If we let everyone who claimed to have an issue get those, everyone would be on an iep. School districts don't have enough money as is, they don't need obese munchies draining resources that help kids that actually need services. And half days are not an accommodation for gen ed students, and very, very rarely used for intensive, multiply disabled self-contained special ed students. This cow would be lucky to get a 504 plan, let alone an IEP.

No. 392920

>>392840
Not to mention if she stops treating her dysautonomia, the school can’t be legally responsible for her decline? And her doctors would surely set her up with psych?

“They’re not giving me what I want not so I’m going to throw a temper tantrum and stop muh treatments to make myself look worse and then blame my insanity on someone else!”

Ffs, if you don’t have medical documentation, VERY few places will give accommodations – this happens EVERYWHERE. Not sure if work places can legally request it in the US to provide reasonableness accommodations, but I’ve provided it for my employers, and I was required medical documentation in every educational institution that I’ve been to for accomodations.

Why do munchies/spoonies expect their accommodations to be handed to them on a silver latter without proof that they have what they say they do?! You can’t self dx yourself and expect schools/work places/etc to believe your need for accommodations.

And I’ve very much heard of clinics that that stay open until 9 on weekdays and will schedule their last patient at 8:30. Even regular doc offices stay open until 4:30 at the earliest. Excuses, excuses.

No. 392921

>>392920
* reasonable
* platter

sorry, my phone keeps replacing stuff annoyingly

No. 392935

>>392920
Haha I didn't notice that the first time, almost all doctor's offices are open until 4:30-5, or later, and if you do go during the school day, it's counted as an excused absence (you're still accountable for making up what you've missed). And most ieps are for students with a disability that impacts their learning, or because they are severely disabled enough to not be able to do their ADLs. It seems like all she really wants is an excuse to be coddled and lazy. If anything she should be put in extra pe, it'd be the best for her supposed dysautonomia. And schools do not respond well to acting out to get what you want.

No. 392941

>>392900

She should know, she already gets some special things because she has an eye condition that makes her legally blind.

No. 392942

>>392840

Why is the image tagged wheelchair??

No. 392944

>>392840
She wants a custom lightweight wheelchair but says her doctor won't approve one since he thinks she'd stop walking completely.

Is it just me or does she complain more than almost anyone about the tiniest stuff?

No. 393053

>>392600
I would absolutely love that! But don't say anything else.

Saged for psychfagging

No. 393062

File: 1506454521561.jpg (27.09 KB, 300x168, IMG_9545.JPG)

>>392663
I was wondering this as well. Getting involved in people's friends lives, exposing information, or even getting involved on a personal level in their lives is completely wrong (plus lolcow rules,) but in cases like these,they're not only committing fraud, but they're taking away from the legitimacy of actual sick people with GFMs who really do need the expensive treatments these munchies claim they need based on pseudoscience and medical postulations from the 1700s (that wouldn't have even made sense back then but I'm willing to extend her that much credit.) Saged for utter blasphemy!

No. 393103

>>393053
>>392600
Please please please don't!! I read about this and could hardly sleep at the thought of that itchiness!! I never should have read about it online. I already have itchy skin, but couldn't stop myself from reading about this! ? I'd have to leave this board if that shit starts up!

No. 393157

>>392148
>>392143
Isn't Percy the border terrier is going to be a therapy dog, not a service dog? In the US, therapy dogs are not given open access like service dogs are. Only service dogs are permitted in businesses, unless a business permits all dogs to come inside.

No. 393212

>>393103

TFW I read the entire KF thread on rope worms at 3am.

Drink the bleach!

No. 393247

Isn’t discussing gorgeous_gatorade_princess against site rules since she’s under 18? I agree she’s unbelievably munchie but she’s a (repeat) HS freshman

Sage for rule fagging

No. 393249

File: 1506474467890.jpeg (179.72 KB, 750x1001, 0B9F2383-AE08-4824-8552-7F4DFB…)

>>393247

I just double checked the rules and it’s under 16. Her birthday is listed on a hospital bracelet Instagram pic. All’s good here, carry on farmers.

Sage for rule fagging myself

No. 393252

>>393249
Yikes. She should be a junior. And if she's putting herself all over IG on a public account, I don't understand the problem. Plus, she's one that's going to be the same at 25 as she is now. An endlessvoices-in-training, minus the "anorexia " kek

No. 393253

>>393247
God her IG name is awful

No. 393262

>>393252

Somehow I have her more pegged as a future Amanda Baggs.

No. 393266

>>393262
Who's that??

No. 393272

File: 1506477451943.png (249.76 KB, 1536x2048, IMG_3217.PNG)

She had an NJ but it fell out ONCE and now she's creaming herself over a permanent tube.

No. 393273

File: 1506477594653.png (1012.95 KB, 1536x2048, IMG_3218.PNG)

>>393272

So sick that she needs ER but must have photos……
She posted about 3 times..

No. 393275

>>393272
Ew. Another eating disorder turned munchie begging for a feeding tube. Hopefully they don't give it to her, as she has no reason to need it (if she really needed a tube they would have put one right back in after the one she had "fell out")

No. 393276

>>392840
I really hope she's in college, as year of 2020 students in high school are in 10th grade (15 to 16 years old.)

No. 393289

>>393276

She’s class of 2021 in HS, she failed freshman year last year due to ‘doctors refusing to treat her’ thus too many absences

No. 393294

>>393266

I'm so sorry that your punitive totalitiarian regime doesn't allow its citizens to access Google.com

No. 393296

File: 1506479197683.jpeg (159.39 KB, 750x1043, 142C2272-717C-463A-9EEA-EC213E…)

Gorgeous_gatorade_princess explaining her school situation (pic 1/2)

She gives me 10/10 munchie pain.

No. 393298

File: 1506479231079.jpeg (403.91 KB, 749x1095, FC857BAA-9654-42EE-96F4-65A0AE…)

>>393296

Pic 2/2

No. 393300

Twitter munchie. Another mis-user of the Vogmask because being "immunosuppressed" gives way more munchie-points than having asthma or allergies!

https://twitter.com/accordingtokenz

No. 393306

File: 1506479812818.jpeg (157.94 KB, 750x1078, 5B4828C3-6BF0-4C9C-9B95-2B1FCA…)

“Doctors didn’t want to treat and believe me?!?”

1/2

No. 393307

File: 1506479839309.jpeg (228.17 KB, 741x1187, 7B605DFC-2134-4B71-8A46-47BA9B…)


No. 393330

>>393306

Just started skimming through her IG and she is a bit of a gold mine. Typical munchie stuff like the overuse of hashtags, attempts to self prescribe medical equipment - wants a wheelchair but doctor won't prescribe it, wants a shower chair, has a rollator (but describes trying to run with it), has a cane but can't use it at school since she doesn't have a doctor's note. She claims GP but posts pictures of the tons of crap she eats (and from what I can tell the doctor hasn't actually diagnosed her with GP but suggested it was a possibility if several other things couldn't be ruled out).
She has a very everyone is out to get me attitude. Claims the school won't give her accommodations because she doesn't have documentation (you can't just request to go to school half days). Held back because of too many absences but saw a post about how she scheduled an emergency orthopedic appointment because her cast (for an injured but not broken wrist) became loose. Appointment was at 10 and then she decided to take the train to the PT to get a note for missing class the previous day. But only the PT could write a note so she waited an hour. I assume she didn't go to school at all that day (it was a Friday) when she probably didn't need the appointment in the first place and then missed school to get a note for missing school.
She does seem to have some mental health issues going on and is probably generally out of shape. Do feel a little bad because she is young and clearly doesn't have the parental support she needs. If she keeps up this path she may never graduate and will probably end up like Dani

No. 393336

File: 1506483734079.jpeg (218.88 KB, 750x1084, 090657F3-108F-4A1C-9D79-F5CA1E…)

gorgeous_gatorade_princess gets her replacement cast (first too loose) on August 31 during the aforementioned ‘emergency’ appointment

1/2

No. 393339

File: 1506483772283.jpeg (296.21 KB, 750x1002, 67A95F50-4072-463F-AF7F-6C1160…)


No. 393341

File: 1506483941437.jpeg (218.33 KB, 750x1083, 60F9C79F-83EB-4E9D-BF9E-ECCE98…)

gorgeous_gatorade_princess proceeds to “rip off [her] cast because [she] can’t do work” on September 6

1/2

No. 393342

File: 1506483980278.jpeg (340.67 KB, 750x1104, 234FB775-7E8C-4142-A9CE-11CE3D…)


No. 393364

File: 1506485970772.png (401.16 KB, 750x1334, IMG_0125.PNG)

>>393330
Not how gastroparesis works kek

No. 393377

>>393364
Good god the munchiness of this one. She ate a salad but was fine, with GP you would most definitely not be okay eating a salad. Not to mention she's a bit large for GP (if anyone calls her out I'm sure she'll starting screaming that she's a GP gainer). And sleeping in the nurse's office? I work at a high school and there are very specific things the nurse will and will not treat. If you're sick enough to not be able to go to class, your parents are called to pick you up. Our school nurse sees on average 600 kids a month (30 every day, which works out to over almost 5 every hour, plus all her other duties, handing out rx meds, paperwork, etc). Going to the nurse because you're tired is not an acceptable excuse. I can't believe the sheer amount of whining in her posts.

No. 393379

>>393377

Not all GP patients are skinny, but that's what happens in the worst cases (and the eating disorders in disguise). I have quite mild GP and dysmotility in my gut, and I'm still a size 12.

Saged for blogging.

No. 393391

>>393273
Do they not realize how ridiculous they look smiling for these photos in the ER or who knows who's taking all the pics? Do they not think the staff might think it's odd you're sooo sick but are smiley AF on social media too kek? Saged for confusion.

No. 393393

>>393296
She can barely feed herself at home? Who's she trying to fool? Saged.

No. 393394

File: 1506490689605.jpg (127.1 KB, 809x768, IMG_6236.JPG)

>>393342
>>393342
If she's a freshman at Malden high school and isn't a year ahead in science, which we know she isn't, she's in Biology not Pathology! I just can't anymore, Jesus take the wheel. Saged.

No. 393395

PTSD triggered by furniture…
Ok

No. 393402

>>393395
I saw that too… how exactly does one get triggered by furniture?

Did a couch attack her?

No. 393403

File: 1506494469177.png (1.48 MB, 750x1334, 87F8013F-7F1C-4D86-84FC-01AA80…)

She’s awfully extreme. She’s like a child – kicks and screams when she doesn’t get her way. It seems like every time someone doesn’t like her or appeal to her she threatens self-harm (stopping treatments, not eating, etc) or suicide. Isn’t this common in BPD and/or FII?

No. 393417

>>392840
She has a vlog channel on YT, you guys. She's worse on video and I'm having too much fun hate watching.

Channel is called Chronically Vlogging (which I think used to be her IG name)

No. 393419

>>392600
LOL! Fucking Morgellon's. This has to be the most wacky, creepy, delusional and bizarre illness hoax ever. We're still waiting for a SINGLE CASE with legit evidence (but not with bated breath, lest we die in the infinite interim). People who believe Morgellon's is real need to either lay off the meth or start psych meds. And I will stop now for the sake of poor >>393103.

>>393417
Screenshot/link or GTFO

No. 393420

>>393403
> Isn’t this common in BPD and/or FII?

Personally, I think it's a little OTT histrionic even for borderline.. E.g. when I was a teen and was depressed I got these kind of thoughts sometimes (mostly pre-period). But I wouldn't even dare to speak it aloud or write it down because I knew how stupid and hysterical it would make me sound. I was more like: "where did that thought come from? That's SO idiotic!" But borderline combined with histrionic PD and/or very little insight in their own disorder.. that could fit.

As to FII.. I honestly don't know. It's such a difficult disorder to research so we have to rely largely on case studies. That makes it difficult to map it. Some FII's certainly have a flair for the dramatic, that much is known. Manipulative suicide attempts (or at times: "attempts") have also been reported.

No. 393422

>>393417
>She has a vlog channel on YT, you guys. She's worse on video and I'm having too much fun hate watching.

>>393419
>Screenshot/link or GTFO


O please no, I'm not ready for this.
Put a spoiler on it, will ya?

No. 393430

File: 1506500425755.png (Spoiler Image, 738.85 KB, 750x1334, IMG_0126.PNG)

>>393419
Never tried to put a spoiler in let alone for a picture so don't hate me if I did it wrong but here it is.

No. 393434

>>393364

Is her friend Nicole an alter?

No. 393446

>>393434
No there's actually pics of her if you trawl back through her IG. Don't have time to post caps right now but will do later.

No. 393463

>>393446

It was a joke.

No. 393472

>>393300
She has an active and large instagram too. She's an OTT spoonie, not a munchie (imo).

No. 393473

What the he’ll is with the #potssyndrome hashtag.. syndrome is included in pots we don’t need postural orthostatic tachycardia syndrome syndrome..?!


Sage for med fag anger

No. 393479

>>393417

Oh good god, she is way too young and healthy for any of the bullshit she's whining about. Child, you have to be part of the plan to make your life better!

Life does not stop just because you have mild health problems. It doesn't stop if you have serious health problems. I was doing my Masters with uncontrolled epilepsy. You have to learn how to get shit done in spite of feeling shitty, otherwise you won't get near the quality of life you keep saying you want.

She comes off as so entitled about other people accommodating her, for the mildest and most inane shit. This is going to stick with her as she continues to grow up. What if she wants to go to college? Get a job that isn't low level retail? Admissions and bosses are going to find this shit and take a hard pass on bringing her in.

It's terrible to see someone so young tank their life so fucking efficiently.

No. 393484

File: 1506517563433.jpeg (219.27 KB, 748x909, F902357C-18C9-4878-9502-CBE392…)

gorgeous_gatorade_princess’ (only) friend Kaylene has Gorlin’s syndrome, the two met at a camp for the blind. She posts, IMO, obsessive updates regarding her friend’s condition. I truly think she’s jealous she doesn’t have a ‘visible’ illness like her friend.

No. 393487

File: 1506517728329.jpeg (307.27 KB, 750x1197, 06B5A0FD-E3F8-4594-9474-46AD54…)

>>393484

Kaylene is dj__diamonds, the two work together one(?) night a week at a local (maybe campus?) radio show, Kaylene may work there more often.

No. 393538

File: 1506525622181.jpeg (122.54 KB, 750x896, ED83CF4F-19EB-4C08-8005-B5950B…)

PAST MUCHIE UPDATE!
Shelbi is doing modelling (and apparently fotography) now? Top kek.

This account is public for now, as is her art account, but no update on munchie antics because friends and family are the only people who are allowed on her new personal.

Was so sick that she couldn’t work but has enough health and energy to get into modelling. Someone must not be getting enough attention and asspats from friends and family from health updates or her general life that she thought she needed to model.

No. 393572

>>393538

Lol her claimed mast cell disorder must be suddenly gone or else there is no way she would be wearing this much makeup.

No. 393574

>>393572
Her doctor told her she didnt have it (I vaguely remember her saying apparently tested for it and was negative but blamed her antihistamine for that result). But like all munchies, they have their “safe” things. But no, few body paints or makeups are useable for MCAS, mainly because they have aspirin / salicylate derivatives (a major trigger in a majority of MCAS patients).

And she’s going by Bee (yes as in ?) now? Isn’t that what a child would refer to themselves as?

No. 393576

>>393538
tbh she looks like an anorexic patient with purple and blue paint in her sooper sever malnootrishun crevices

No. 393593

Can anyone tell me why you would need a service dog for SMA Syndrome?

(I’m looking at you ces825)

No. 393865

>>393858

She’s prescribed promethezine… so yah probably is high.

No. 393916

>>393479
She was complaining about her parents not being able to afford Gatorade and someone suggested milk and something else. She then claimed to be lactose intolerant, yet has pics of ice cream, cheesecake, Starbucks with whipped topping, and lots of Mexican food with sour cream and cheese. Oh me….She is a baby Jacquie!

No. 393923

>>393916

Not to mention the fact that its usually not that hard to find Gatorade on sale. At least by mean, the 32oz bottles are usually only $1. Even if they aren't on sale, they aren't that expensive - especially considering that she is constantly posting pictures of things like Starbucks, Dunkin Donut drinks, and other sugary expensive drinks. If Gatorade is that vital to your well-being, then prioritize it over all that candy and junk you don't need.

Side question - Is Gatorade actually really that helpful for people with GP, POTS, etc…? It has been discouraged by my running group as a way to replace electrolytes because it is filled with so much sugar. There are lots of other options available/recommended for "athletes" (I hesitate to call myself that) so I was just wondering if those types of options are also more highly recommended for people with medical issues that cause dehydration.

No. 393925

>>393923
Self blogging here…I have hyper pots. My first crappy specialist pushed Gatorade. However, after seeing one of the top clinics in the country for pots—NO! It's full of junk and fillers. They prefer water with some salt.

I personally like Normalyte. It has a lot of vitamins but not all the junk.

No. 393954

I hate when spoonies gets a tube before a liquid diet and medication. I've seen so many girls who get tubes straight away, NJ, but still a tube before other treatments? I want to grab them and shake them. And a lot of them aren't munchies, and are really nice but are heading into the munchie territory.
There's a pretty good chance that a less invasive intervention would work well for a lot of them, too.

No. 393957

>>393923
Idk, I've never had it recommended for pots. For GP yes, because it's mostly sugar and can help a little if you can't eat. Best for pots is increased water with increased salt on food. There are special drinks, but those can be expensive.

No. 393959

>>392840
No school will give accommodations without documentation, and it's really unlikely to get half days even if you have documentation.

No. 393961

>>393923

My doctor suggests that I have 1-2 sports drinks a day in addition to 3-5L of water and 2g of salt tablets as a part of my POTS treatment

Sage for blogging

No. 393963

>>393954
Not to mention that it's irresponsible of their doctors. The least invasive treatments are always the best, so diet changes and then meds, and an NJ tube only if a significant effort has been made with diet and medication, and then a permanent tube only if the NJ is successful. What I also don't understand is all the munchies getting permanent tubes when they're not running them enough to gain weight (or they're gaining weight beyond the amount of tube feeding they're on, the chronically jaquie thread for an excellent example of this).

No. 393970

>>393959
Yup. Before you get an iep they do a MET, I forget what it stands for, but basically it's the iep team looking at documentation, testing, etc, to see if you legally qualify for an iep. And for students with chronic illnes, they usually get a 504 plan, which is some accommodations like using a laptop instead of writing, extra excused absences, modified pe activities. But you're still responsible for completing the work, and you sure have to show up at school unless you're sick and have a doctor's note. You have to be in school a certain number of days to get credit, and half days don't count as full days. The sad thing is that this cow thinks she needs a million accommodations when there are kids with very severe disabilities who are in school all day, every day. High schools are there to prepare kids for life as an adult, not to teach them how to be lazy and to milk any illness you might have.

No. 393973

Her friend, the one with the actual sickness/syndrome doesn’t seem as OTT.

No. 393976

>>393970
I wonder how involved her parents are. If I were lagging behind in school for whatever reason, my mom wouldn't let me be out hanging with friends. She would make me go home and catch up on school work. Which also brings up the point–Too tired for school, but perks up enough to hang out with her friend after. Granted she takes muscle relaxants for TMJ and phenergrin which cause severe drowsiness. I don't think she really needs them. Take the ibuprofen for jaw pain and quit eating all the junk. It would help with a lot of symptoms. If she is lactose intolerant, quit eating dairy!

No. 393989

>>393976
There are muscle relaxers that are non drowsy, and she'd probably benefit more from diet changes than any medication. She spends enough time on social media that she'd get all her work done if she prioritized her time (there's this whole no-homework movement anyways, most schools now give students time in class to get work done, they only have homework if they waste that time in class)

No. 394018

File: 1506571185690.jpg (338.41 KB, 1058x751, Screenshot_20170927-221528.jpg)


No. 394021

File: 1506571250300.jpg (882.83 KB, 1080x2087, Screenshot_20170927-221742.jpg)

Simplyaspoonie today

No. 394037

>>394021
Munchies are obsessed with "draining" their tubes. Plenty of people don't need to drain, but it's a spoonie badge , having those speschel bags to purge in

No. 394044

>>393342
Huh. Love how she tagged CRPS yet from what I've seen she hasn't really talked about it? Correct me if I'm wrong. It just seems with such a severely painful syndrome she'd maybe make a bigger deal out of it instead of being triggered by couches. Ah, who am I kidding. She tags completely different disorders and illnesses in all of her posts. Girl needs a reality check

No. 394052

File: 1506574786164.png (125.48 KB, 640x1136, IMG_0019.PNG)

Is she actually serious? She was getting stressed out because her parents don't have enough money to buy her Gatorade, so someone suggested this. Uhhh last I checked you don't need a prescription for magnesium… a whole bottle of it is probably the same price as a days worth of Gatorade. The banana thing is a whole other thing, I won't get into that. Is she really wanting magnesium prescribed to her so she can be speshul?

No. 394054

>>393923
Quick self blog to answer question. For me Gatorade is a life saver as sometimes I'll go a few days without being hungry and can easily get dehydrated; when the J tube and pacemaker were brought up my father (old school surgeon) wouldn't allow it so both him and my GI advise cutting it in 1/2 with water. So yes Gatorade is the bomb especially after you're been vomiting (it taste so sweet and cool on your throat.)

No. 394074

>>393963
>an NJ tube only if a significant effort has been made with diet and medication

Normally, yes. But if you've lost too much weight, sometimes getting calories in asap takes priority over trying the least invasive treatments first. But in those cases it's good practice to start with diet and meds with NJ in situ and take it out if the patient reaches goal weight.

No. 394081

File: 1506588286417.png (67.94 KB, 813x609, sickdate 7.12.07.png)

Holy fuck, I found a Munchie goldmine! This one refers to her relationships with doctors as fucking DATING and can't understand why so many docs 'break up' with her because she is just - you guessed it - too complex. She claims she's got the ~rarest diseases ever~, comparing her sooper speshul situation to patients with fucking PROGERIA (one of the rarest conditions on earth), has seen 55+ doctors and counting, and admits that some docs have even written Munchausen's in her chart before. She supposedly has all the hot #Spoonie diagnoses but also a soooper rare bizarre inoperable brain tumor and issue with CSF 'sloshing' in her brain and…you just gotta read this shit for yourselves.
https://thesickandthedating.com

No. 394097

Can someone PLEASE link me to the Jaquie thread?!

Sorry I'm late to that game.

Sage for no contribution.

No. 394098


No. 394104

File: 1506602408673.png (76.19 KB, 1210x336, wtfsick.png)

>>394081

What. What. What. I cannot believe the delusions of this bitch.

Just. Just oh my god. Tilted her head to slosh her cerebral spinal fluid around and correct mental deficits oh god kill me.

No. 394131

File: 1506606425378.jpg (123.41 KB, 394x700, 20170706_152454.jpg)

>>394104
Obvously this is a facial droop and not an eye half closed

No. 394161

Why do these people use g tubes to drain food they eat?! It pisses me off. Draining acid and bile because you repeatedly vomit it up, sure.. but eating just to drain is disgusting

Sage for rage

No. 394208

>>394161

I mean I use mine for drinks. Completely not eating and drinking is mentally draining so every once in a while I have something nice to drink.

Draining food is such a bad idea for multiple reasons.

No. 394209

>>394208
sage your blog next time.

the munchie thread has become a mass of spoonies coming in telling theyre totally better than these spoonies because xyz. we need our munchie queen robyn back.

No. 394213

>>394131
lmao, i love how her lip isn't drooping at all. fucking delusional

No. 394242

>>394074
That's exactly my dad's thinking and he doesn't trust any procedures that haven't been out for at least 20 years (pacemaker done first in '03.) He's really old school with his pts but even more so with me. Sorry for self blog- just that I concur or at least my father would. Also thanks for the advice and for being someone who isn't all about these invasive treatments like the munchie's doctors are. That drives me crazy.

No. 394244

>>394081
God or Goddess Anon thank you for this gold! Progeria? Fucking progeria? I love how all her doctors are "breaking up with her" (i.e., Dr shopping) and the doctors have even written Munchhausen's in her records! And she even admits it! Bestill my heart I'm not worthy anon.

No. 394248

>>394104

You mean the doctor didn't believe you when you showed up with symptoms that you could easily fake and then didn't believe when those symptoms were magically cured after shaking your head? Shocker!
She probably didn't even fake the symptoms well - doctors know which nerves/muscles are connected and can pick up on when your fake symptoms don't match how the body actually works.
I am sure the state board is taking her case very seriously - I bet the packet she sent to them sounded like the ramblings of a munchie and only further support the doctors who said she was making it all up.

No. 394254

File: 1506620796640.jpg (587.21 KB, 1031x1278, Screenshot_20170928-082122.jpg)

Looks like Carmel's back!

No. 394317

>>394209

I was just trying to explain that draining can also be used for drinks, not only bile. Calm your tits.

No. 394348

>>394317
cool. learn how to not powerlevel and sage blogs.
>i imagine not eating or drinking could be mentally draining but using it for drinks every now and then versus eating then draining, risking clogs and infections, seems plausible

ftfy something like that. so it doesnt seem like a blog but you can use your experience instead of a spoonie pretending shes better than the others.

>>394254
i wonder if she just google-fu'd the hypobaric therapy. its like shes looking for the most off the wall treatments for shit. the only thing that links it to being a consideration is migraines and autism but there is really no support that signifies that its even effective. but what an amazing photo op for her!

No. 394466

File: 1506643327817.png (947.28 KB, 1536x2048, IMG_3223.PNG)

Ugh at this "chronic Lyme" warrior. So munchie. She Loves a medical advice as much as Jaquie Blake. She even copies Jaquie by doing the thumbs up thing.

No. 394470

>>394317
Sorry I meant to say the people purging solid foods. I do the same with drinks because being unable to orally take anything sucks so a drink is nice!

No. 394476

>>394466

This munchie is even on Kate Farms like Jaquie… does anyone with a legit need use Kate Farms, seems like it's only Munchies.

No. 394482

File: 1506645905450.png (28.56 KB, 886x367, wtfwicck.png)

A shadow lolcow posted a thinly disguised boohoo story on /r/nosleep of all places, trying to make their vascular EDS part of a horror story. Looking at their post history, they only wish they had EDS, currently they only have a fibromyalgia dx.

Fuck me running with a chainsaw.

https://www.reddit.com/r/nosleep/comments/72330z/black_ambulances/

No. 394491

>>394482

I saw that. Love how friendly the vEDS character is with the local paramedics in the story too absolute kek

No. 394493

File: 1506646721919.png (20.16 KB, 892x239, wtfwicck2.png)

>>394482

This person just fucking blares their embarrassing history all over reddit. Including descriptions of their past rapes, they describe having a pain pump (for fibro???) and having a leaky bladder in public.

God why.

No. 394508

>>394493
Reddit's EDS "community" is fucking embarrassing

Full of munchies and OTT spoonies who cross pollinate to Insta. It can be fun to spot them, though.

No. 394514

Among many things to dislike by having EDS, these types of people who claim EDS are the main reason I hate actually having it -.-

sage for blogging / possible power level, sorry

No. 394598

File: 1506656976389.jpg (650.54 KB, 767x1883, Screenshot_20170928-224511.jpg)

Look who's back! 1/3

No. 394601

File: 1506657024373.jpg (771.23 KB, 781x1768, Screenshot_20170928-224637.jpg)

2/3

No. 394602

File: 1506657052044.jpg (482.63 KB, 754x1276, Screenshot_20170928-224733.jpg)

3/3

No. 394606

File: 1506657381533.jpg (430.64 KB, 1057x1854, Screenshot_20170928-223339.jpg)

She got her "official" POTS diagnosis. She's so fucking happy. She's already started tagging Instagrams with syncope alert dog. I can't be bothered to watch the video she recorded at the doctor's office, but there is one if anyone is interested.

No. 394609

File: 1506657634090.jpg (Spoiler Image, 708.81 KB, 1058x1897, Screenshot_20170928-223228.jpg)

If you're easily grossed out, don't look.

Simplyaspoonie is still compliaining about her G/J surgery. She's only a week post op and wearing a tubie pad on one of the ports, I'm not sure, but that doesn't seem great for healing. Of course she had to bring up how much longer her hospital stay was than normal, and how her EDS delays her healing. She's in so much pain she can't walk without narcotics. After 6 days in the hospital she wishes she were still there. Her j tube stoma is infected to the point skin is peeling away and starting to make a second opening next to the j stoma.

No. 394610

File: 1506657769643.jpg (Spoiler Image, 354.57 KB, 1080x1003, Screenshot_20170928-230123.jpg)

Post surgery shot.

Simplyaspoonie her infected spot.

No. 394624

>>394609
Why do all the spoonies beg for invasive procedures and then complain about them? Medical professionals are required to explain the risks beforehand. I'm sure they secretly love the attention and sympathy. (And her tube doesn't look that infected if it even is. Surprise surprise your body doesn't like extra holes cut into, and gets red and inflammed. Doesn't mean it's infected, but since she's a spoonie it'll be a life-threatening infection soon kek)

No. 394634

>>394609
She is upsetting..geezus.
She's trying to make it sound like it's a super special thing and who in their right mind would choose to brag (oh wait..we know who) about a process that is common..staying 6 days or more is common even for people without EDS
Every case is different many stay overnight, 2 nights, many have it outpatient and many have long stays. Sorry to say it dear munchie, absolutely nothing special about your vacation at druggie hotel..i mean hospitalization.

No. 394637

>>394052
You don't need an Rx but the Drs can write an rx out for OTC medication because it's cheaper if not free
Just depends on insurance really. If you have copays it can be the same price OTC or rx or it can be less than OTC or it can be a bit more expensive..if it is cheaper or free as an rx thats the best way to go because $3-20 for OTC adds up quickly on tight budgets.

No. 394639

>>394609
>I wish I was still at the hospital

shocker

No. 394644

>>393296
This one is infuriating!!
Seriously if life is just so hard on her she needs to just drop out of school get a GED eventually.
Problem solved.
They do at home teaching for students who are sick and have to take a long sick leave and is free through the school (like busy cancer treatments or mono etc) but you actually have to be sick and if your Drs wont provide her parents, herself and her school with the proper paperwork to get help ,continuously crying over the now known faked or OTT illnesses isn't going to make you magically get sick enough to get the help..and if she doesn't have issues hanging with friends/doing stuff how does she think that's not a huge red flag?
Is it possible she also has a learning/cog. disability similar to Dani?

No. 394733

>>392554

What this is trying to clumsily express is the epigenetic hypothesis, viz. certain external stressors can cause certain proteins genetically coded for to be expressed more or less intensely. Except the reasons for why that doesn't apply here could fill a book. It's not how it works. Whoever said this needs their license pulled.

No. 394873

File: 1506711873526.jpg (301.45 KB, 1281x1822, FullSizeRender.jpg)

This one worries me. Not only does she have a feeding tube, but she's insisted on one for her 4 year old :s

No. 394886

>>394873

I've seen a couple of her youtube vids (she doesn't upload regularly) and iirc her daughter got the tube first. She had a GJ tube placed in March which became infected and was surgically removed and replaced with a J tube (at a slightly different site). She reports that poop was coming out of her original stoma. Idk whether she needs that tube or not but I really hope she does because that's grim AF.

I'm inclined to believe her daughter has EDS and she's certainly hypermobile so maybe she does too (hard to judge if she has other signs on IG) but she is so OTT. The more I read the more stuff I see that makes me roll my eyes - ordering cartoon tubie pads before she even has her tube placed, SO MANY TUBE PICS.

So, yeah, can anyone spot anything I've missed that makes her glaringly munchie?

No. 394893

>>394873
Her daughter has a button(feeding tube), because she can't wear a backpack thanks to her severe EDS.
Can someone with EDS explain this, please?

How big are the odds, that the mother and the daughter have EDS and GP?

No. 394895

File: 1506715417433.jpg (388.42 KB, 1328x1655, IMG_3228.JPG)

It's not normal to be this happy to have had a hole punched into you. Weird munchies.

No. 394897

>>394893
That's stupid, and doesn't make sense. If you're tube feeding on the go, you have to carry a backpack. A button is just smaller on the outside. The inside and how it works doesn't change. It's basically the same as a normal long tube, except the outside tubing can be removed when the tube's not in use (good for kids because you don't want them pulling on it, for adults it's nice to be able to hide it). The pumps they use for kids are super light, and even with severe eds her daughter would be fine carrying it (babies can carry their own pumps in tiny backpacks, which is also pretty darn cute). And honestly, eds is passed on at a 50% chance (for hEDS only), but it's harder to diagnose in children, and children have all sorts of gi problems that aren't automatically GP. But still, I've seen her IG, she's legit insane.

No. 394898

>>394895
If you're legimatly in the worst pain, you're not smiling and taking selfies. And you're not supposed to start feeds right after surgery. I wouldn't be surprised if she's deliberately trying to get an infection. And now that she got her tube, I'm sure soon she'll be begging for a button. These munchies are ridiculous.

No. 394904

>>394897
Hm. If your shoulers are very instable, carrying a backpack can be next to impossible. I could see that being a problem for an EDS kid.

Also, I think mum has EDS, saw only two vids (so don't feel I can comment on the rest) and her skin is pretty EDS-like.

But o man, I SO hope that little girl actually needs that tube.

No. 394906

>>394904
The weight of a backpack is on your back, not your shoulders. Power level here: my shoulders are severely affected, and a backpack is fine for short periods of time, if I'm very careful putting it on.

Sage for power leveling

No. 394909

>>394906
That getting on part is precisely what might be the problem for some.

No. 394934

>>394873

She's very OTT and overshares a lot, but seems to be quite sick. Comparing her older photos to before the tube or even now, you can see quite a change. And her daughter was a preemie, it's kinda disturbing how many pictures there are of her on the web. Idk, but I wouldn't post pictures of my baby in nicu… Also, looking at her instagram you couldn't guess that she has another child, but he's not sick so why bother.

No. 394938

>>394934
I've watched some of her YT videos and I think she is legit. When I saw her child was a preemie I was reassured a bit as she probably did not push for her to have a tube as in MBP; preemies can have a lot of feeding problems and it isn't necessarily connected to the EDS. Even if it is: from what I've seen, I think daughter has legit EDS as well.

I wouldn't put my child all over the internet though, certainly not at that age. And I wondered what happened to the other child. She mentioned somewhere that with both of her pregnancies her water broke way too early (also pointing to the EDS to be legit) and I thaught maybe the other kid didn't make it..

So yeah, I agree with the other anon: she overshares, but it also imo actually sick.

No. 394957

>>394904
kek, what about her skin looks EDS to you? I think she just looks massively massively over blurred. I diagnose Facetuneitis. Ugh, she may possibly have mild hEDS or just be on the spectrum of hyoermobility, but no question she is OTT. Her daughter is autistic, she says, so I wonder if she is too and medical stuff is her special interest? It's scary seeing that poor kid plastered all over her public feed.

Also fucking terrifying to see how many people I follow are following her. I hope they're not trying to get inspiration on how to get tubes or diagnose their future kids. Cringe.

No. 394959

>>394957

Whut? It's more likely they both have EDS than both have autism.
Also can we not go around blaming people's undesirable/fucked up behaviours on autism, whether there's any evidence of them being autistic or not?

No. 394970

>>394957
>kek, what about her skin looks EDS to you?

It's loose and stretchy. If you look at this vid, I absolutely do not doubt her EDS diagnosis for one minute.

No. 394983

>>394898
Feeds can theoretically be started immediately after surgery, but the usual is 4-12 hours. Studies have been done showing no more risk at 3 hours than longer times.

No. 394987

>>394938
>>394938

The baby was fine, it was a boy and he seems to be developing pretty normal. There are some pictures of him on her insta, but nothing compared to how many she posts of her daughter… I get it, she's sick, so she's probably dotting on her, but this doesn't seem very fair to the boy…

No. 394992

>>394970
Ugh it's kinda disturbing to see her stretch her tattoo that much… But yeah, she seems legit sick.

sage for being weirded out

No. 394996

File: 1506726319046.png (760.11 KB, 640x1136, IMG_1013.PNG)

She's in more pain that ever but there's two selfies of her grinning with her precious tube. I honestly think they gave it to her because of how much she begged. No one told her she absolutely needed it, and when her NJ came out, they didn't put another in, which you'd think they would if she needed it that badly. The current hospital probably just wanted her to quit begging them and taking up a bed.

No. 395000

>>394996
She looks a lot healthier (like pretty damn normal and healthy) than that recent picture she posted saying why she needed a tube so badly….

No. 395002

>>395000
For someone so "malnourished", she sure bounced back from surgery quick

No. 395014

>>394970
Oh yeah, I see it much more here. I'd only looked at her feed and it's not really visible there IMO because she edits so much.

And to the anon moralfagging about autism - it's not rare for autism to appear in a parent and child, you div. Nor is it even a negative trait to suggest she has an autistic special interest. That's better than being a munchie or going all MBP on her poor kid.

Conclusion: they most likely have real eds but she is incredibly OTT and not a good example of parenting.

No. 395054

>>395014
Having eds and even GP isn't an excuse to be only focused on your illness. I'm sick of people acting like they're automatically horribly disabled. Some people are somewhat disabled, yes, and with any chronic illness you do have to put a lot of energy into managing it, but you can totally still live a decent life.

Sage for rant

No. 395066

File: 1506737686544.png (2.14 MB, 1049x1961, 20170929_211253.png)

Carmel's deleting her account

No. 395069

>>395066
Except i guarantee she'll be back. She can't survive without all the asspats from fellow munchies and ott spoonies

No. 395118

>>390585
this chick is now excited on her yt because she got a diagnosis. only munchies are this excited to get diagnoses. it's so sick

No. 395238

>>395066
I think her account is already gone - I just went to look at it and can't seem to find it.

No. 395339

>>392361
Her explanations are all on the "WTF"-level.
She kept tagging her pics with "CRPS" until someone pointed out that chronic pain syndrom isn't "CRPS". Suddenly she has CRPS instead of just CPS and I doubt that a doctor diagnosed it.

Rheuma_esgibtkeinzujung receives rituximab every 3-4 month and she states that she's immunsupressed. Can you be immunsupressed with such a low dose? You rarely see her with a mask, so it's really suspicious.
You aren't allowed to wear masks in austria, unless you need them. Must be hell for Munchies

No. 395679

bendycripple is out of the hospital after her most recent suicide attempt overdose and is whining about people calling her out

No. 395682

>>395679
Eww and she’s talking about sex with her SO. Who would want to have sex with that cow. Ew ew ew.

No. 395697

Was going through her page and tags, what exactly happened to bendycripples GP that required her to be on TPN? Did that shit magically disappear?!

No. 395698

File: 1506834354279.png (729.86 KB, 750x1334, IMG_5669.PNG)

bendycripple owes up to faking her central line

No. 395700

>>395697
Her GP is very questionable (like many of her physical illnesses)

No. 395701

>>395698
Oh yeah, she’ll admit to that, but she’ll fight tooth and nail about everything else being real even if it doesn’t add up.

I think she ended up on tpn because she refused food and forcibly refused / removed tube feedings with her ED

No. 395703

File: 1506836772164.png (Spoiler Image, 1.48 MB, 750x1334, IMG_5723.PNG)

Much excitement to be a tubie again! Very small tube.

No. 395709

>>395703
Good lord, so much wrong about this. They don't give ng tubes for GP. If you have an ng, food is going into your stomach, and your stomach is at least working well enough to tolerate a liquid diet. Also, she looks pretty well nourished to me. And lastly, part of the tubie club?? It's only a club to munchies and attention whore spoonies. People who actually depend on feeding tubes and are normal human beings don't show them off at every opportunity.

No. 395715

>>395709
She got the NG because of her refusal to eat with her ED and everyone knows it. The gp is a cover up.

No. 395726

>>395709
>They don't give ng tubes for GP. If you have an ng, food is going into your stomach, and your stomach is at least working well enough to tolerate a liquid diet.

That's not always the case. Sometimes people can tolerate the s