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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
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. Communication forums specializing in medical or psychological recovery were established to give lay users support in navigating often confusing and frustrating medical processes and bureaucracy. Communities often formed on those forums, with the goal of sharing information to help other members. Medical websites also became common, giving lay users access to literature in a way that was accessible to those without specific medical training. As Internet communication grew in popularity, users began to forgo the doctors and hospitals often consulted for medical advice. Frequenting virtual communities that have experience with a medical problem, Feldman notes, is easier than going through the physical pain or illness that would be necessary before visiting a doctor to get the attention sought. By pretending to be gravely ill, Internet users can gain sympathy from a group whose sole reason for existence is support. Health care professionals, with their limited time, greater medical knowledge, and tendency to be more skeptical in their diagnoses, may be less likely to provide that support."
LINKS to articles and info on MBI:https://www.munchausen.com
(Dr. Feldman's website)https://www.thestranger.com/seattle/the-lying-disease/Content?oid=15337239https://www.abc.net.au/news/health/munchausen-by-internet-what-drives-people-to-fake-an-illness/7631990https://www.theguardian.com/society/2015/apr/29/jules-gibson-munchausen-by-internet-sickness-bloggers-fake-it-whole-pantryhttps://en.wikipedia.org/wiki/Munchausen_by_Internet#Characteristics
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Comment is still up!
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.
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
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Here is the full comment
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Then there is this one which is fucking great. It got deleted but I have the screen cap I will post after this
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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.
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.
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.
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Yes, Sophie's doctors have asked her why she uses a wheelchair.
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.
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.
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.
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.
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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.
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
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.
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?
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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.
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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
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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.
okay, they really are
the worst chronic illness society. They make a mockery of EDS.
Lara Bloom should step down :/
wouldn't effect her motility any..other than allergies its commonly used for nausea
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…
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.
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.
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.
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.
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.
> 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.
> 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.
> 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.
> 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
> 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.
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.
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.
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.
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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.
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.
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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!
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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.
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.
Muchie Olympics: the Hunger Games edition
Jaquie vs. Chloe vs. MLS
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)
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
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.
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!
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?
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.
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
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?
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?
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."
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
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.
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.
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?
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.
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.
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.
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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)
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Image from Sep 2014 where she has ed tags
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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.
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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.
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.
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.
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.
>>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)
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
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.
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?
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
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.
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.
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.
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
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.
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
> 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.
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)
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
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, 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 :)
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.
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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
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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
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.
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.
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.
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
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.
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!!
Sage for MORE personal conversation.
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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.
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.
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.
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?
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I know she always says she only has a few bites but whatever, she eats totally the opposite of what she should.
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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.
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
Thumb doesn't even look the tiniest bit different from ordinary
What a cow
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Oh god, another one doing the fucking dumb thumbs up.
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The doctor who specialises in GI disorders doesn't believe in your disorder.
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Sure Jan. Your GP is dropping your weight. Not ana.
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.
See this bitch is even straining to make her thumb look more hyperextensible.
Saged for fuckery
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)
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??)
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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.
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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.
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.
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.
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.)
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.
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?
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Of course, outpatient isn't special enough, she has to stay in the hospital.
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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
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.
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….
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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
* can have, not have have
(saved for utter proofreading incompetence)
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.
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.
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)
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
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.
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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.
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.
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).
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.
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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)
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
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She says she has CF in her FAQ but it's not on her "spoonie list".
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
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.
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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?
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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.
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.
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It's her but a different username.
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.
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.
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.
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…
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
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!)
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)
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bendycripple this morning. must have gotten some heat from farmers kek
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.
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.
My mistake, I guess I wasn't looking at the peptide. 1.5ml/hour is correct.
Sage for fucking up
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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 :)
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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…
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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.
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.
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.
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Some new updates from MyBlondeVoyage. This sounds medically accurate, sure…
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Does she realise that sea salt and table salt are chemically the same thing? Nah, she has to be special.
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.
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Kek. Why is she so condescending?
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.
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
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.
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.
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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.
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.
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?
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.
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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.
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But she's a dancer? (This is on her third account - ballerinaboss_ )
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.
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
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.
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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.
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?
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)
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.
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over dramatic much?
Bronchitis is going to cause her to
>>cough up a lung (and die)
- 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.
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.
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.
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.
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.
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.
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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.
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
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
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.
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…
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?
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So Harlow just randomly popped up in Facebook videos? Uh
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.
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
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.
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
Didn't see this before posting..sorry..and I agree.
Thank you to whoever made it!
Please move the Jaq conversation here > >>>/snow/391212>>391207
You’re welcome (:
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
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Never misses an opportunity to show off her port. She wears low cut tops all the damn time. So munchie.
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Medfags - "toxins attached to my DNA" and "toxins blocking my mitochondria" - is that all woo woo bollocks?
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Finally, a doctor says what the entire world can see….!
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.
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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
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.
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.)
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Are you fucking kidding me?
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Guys quick! Chloe is dying literally and needs more money for life saving treatment in a country where healthcare is free!!
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.
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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.
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.
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.
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.
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
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.
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Saged for just I don't freaking know anymore.
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.
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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.
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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.
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.
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
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"I have so many doctors it's hard"
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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…
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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?)
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.
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>Borderline GP. Suspected EDS. She's looking forward to getting her portacath next month in time for disautonomia awareness month!
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!
>>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."
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.
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
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!
If I ever have a daughter, I shall be sure to avoid the name Chloe.
Sage for random OT.
Don't forget the other crazy lady names
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?
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Pain at a 9?
Nausea at a 9?
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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.
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OMG, open tube begging!
>>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.
… 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
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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!
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?
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.
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).
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.
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….
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I was wrong, there's actually nine types.
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.
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
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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.
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
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- 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.
OI is technically a term for ortho hypotension, and does not include tachycardia. POTS and OI are distinctly separate.
saged for medfagging
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
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. 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.
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.
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.
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.
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Some guy who's a specialist in ME…and EDS….and vaccine injury….claimed this.
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!
>>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.
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.
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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.)
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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…
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.
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Munchie tell: a simple procedure performed with local anaesthetic is referred to as an operation.
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.
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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!!!
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
Okay maybe common, but she's still being OTT about a completely simple procedure.
Also when did this bitch get a lactose breath test.
Right now you are coming off as big a cow as them.
Back off, breathe, and deal with it.
OMG Life is so unfair.
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Kek. Maybe because you don't need the accommodations.
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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
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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.
sorry, my phone keeps replacing stuff annoyingly
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?
I would absolutely love that! But don't say anything else.
Saged for psychfagging
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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!
TFW I read the entire KF thread on rope worms at 3am.
Drink the bleach!
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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
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She had an NJ but it fell out ONCE and now she's creaming herself over a permanent tube.
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So sick that she needs ER but must have photos……
She posted about 3 times..
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Gorgeous_gatorade_princess explaining her school situation (pic 1/2)
She gives me 10/10 munchie pain.
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“Doctors didn’t want to treat and believe me?!?”
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
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gorgeous_gatorade_princess gets her replacement cast (first too loose) on August 31 during the aforementioned ‘emergency’ appointment
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gorgeous_gatorade_princess proceeds to “rip off [her] cast because [she] can’t do work” on September 6
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Not how gastroparesis works kek
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.
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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.
I saw that too… how exactly does one get triggered
Did a couch attack her?
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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?
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)
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
Screenshot/link or GTFO
>>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.
>>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?
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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.
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.
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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.
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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.
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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.
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?
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.
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.
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
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.
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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
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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?
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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
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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.
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Obvously this is a facial droop and not an eye half closed
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.
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.
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.
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Looks like Carmel's back!
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!
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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.
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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/
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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.
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.
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Look who's back! 1/3
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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.
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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.
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Post surgery shot.
Simplyaspoonie her infected spot.
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.
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.
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.
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?
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This one worries me. Not only does she have a feeding tube, but she's insisted on one for her 4 year old :s
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?
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?
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It's not normal to be this happy to have had a hole punched into you. Weird munchies.
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.
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.
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
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.
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.
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?
>>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.
Ugh it's kinda disturbing to see her stretch her tattoo that much… But yeah, she seems legit sick.
sage for being weirded out
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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.
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.
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
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Carmel's deleting her account
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
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bendycripple owes up to faking her central line
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
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Much excitement to be a tubie again! Very small tube.