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No. 409311
Jaquie Blake Beckwith, AKA chronically_jaquie, is one of the general Munchausen's/OTT thread (>>>/snow/387658) Munchie Queens.
Instagram:
https://www.instagram.com/chronically_jaquieInstagram:
https://www.instagram.com/helper_dog_harlowYouTube:
https://www.youtube.com/channel/UCKaX0dQwEUgTafzCZ2yEjUQ- She has a Patreon for people to pay her to be "sick".
- She appears to have a few genuine illnesses, but overall contradicts herself 99% of the time.
- She has a button tube but shoves crap food into her pie hole most of the day. Claims she cannot tolerate her formula, and has to get a special type, but can eat fried crap.
- She has a service dog (Harlow) who does tasks that she is quite capable of doing (like grabbing a blanket across the room).
- Her service dog does not get worked the way a service dog should.
- She will not respond to messages online (except on her Patreon) because of "safety issues" (though we're pretty sure it's because she wants money to talk to her).
- She will not allow people to send her mail because she is too sick.
- Refers to herself as a "genetic anomaly".
- Claims to have EDS, POTS, narcolepsy, cataplexy, autism, unspecified immune problems, a mutated mitochondria, and too many other things. Surprisingly, Factitious Disorder is not on her list.
- She appears to be copying Mary Fray.
She enjoys deleting comments that call her out, and has an excuse or explanation for everything, something that is found psychologically in pathological liars.
Everyone is tired of her, even her family, and some people in the Munchie thread, so here's a place to talk about her to your heart's content.
No. 409335
File: 1508969552951.jpg (5.97 KB, 300x168, download.jpg)
>>409332i'm trying to deduce how the fuck a bitch with a feeding tube is getting free hidden valley ranch and what the connection here is besides her damn dog bringing her the bottle by accident
No. 409367
>>409009Oh gosh, you've implied I am wrong. Would you mind telling me what I am incorrect about? You wrote, "Actually you're told not to mess with the balloon, your doctor or nurse can check it."
Since Jaquie's doctor gave her the correct syringe to use for checking balloon and told her to check it every two weeks, I admit, I assume that the doctor wants her to check it, but she should not check it?
Plus, the instructions for the patient to check the balloon are given on page 6 and explained on page 20 of Jaquie's current patient booklet and posted on multiple hospital websites, but you are saying that these instructions are incorrect?
I'm really confused.
No. 409422
>>409417Yeah, she's claimed that she gets chest/sinus infections multiple times a year (which again, still within a normal experience and doesn't mean you are speshul immunocompromized). But all
we've seen in a year of vlogs is #drumroll…a mild cold.
No. 409624
For someone who is supposed to be so immuno-compromised, she recovered from her supposed aseptic meningitis after IVIG within 2-3 days and her recent cold turned into a self-diagnosed sinus infection that was better the next day. On another note, after only a few short hours of tube feeds she was strong enough to go out to eat with "Babe" and eat a giant sandwich and drink a carbonated drink, after not being able to to take more than a few bites orally while her tube feeds were on hold. Now that she is back on track nutritionally, she should be stronger and more able, so some other disorder will crop up, because she is prepping for the arrival of the Barbie car wheelchair and needs to appear incapacitated to qualify using it. She has to have a reason to sit at home all day, not go to school or have at least a parttime job, to need drivers, walkers, doctors, and a wheelchair, etc. because she is such a slug. Her only "talent" is cropping or staging videos such as the Harlow/Hidden Valley one. The constant loop/repetition in her videos isn't autism–just her stupidity and poor editing.
No. 409680
>>409638I
don't have POTS (or any other disorder related to heart rhythm) and around 120 is what
I consider a spike. It's a tad uncomfortable, but that's all. Definitely not a sign you have sooper severe POTS. And you
feel it; you don't need a dog to 'alert' you to that. Jeesh.
And girl.. if you need to
explain why you need a wheelchair and you need so much time, you probably don't. Do you know what a
custom wheelchair is for, Jaquie? It's for people who cannot transfer to a normal chair, or somehow cannit sit in a normal chair so they have to sit in their chair ALL day. If you can sit in a normal chair, you don't need a custom chair. If you still need a chair during day-long outings, you can either rent one or get a manual chair for incidental use. There's some really good chairs in that category. You are skipping two categories ahead of what you actually need (if you actually need one at all, that is).
No. 409706
>>409704She’s smart enough to memorize enough medical material to fill a textbook and recite it by heart, mimic it, manipulate doctors, hospitals, nurses, her family, and an entire fan base. I’d go out on a whim here an say she’s pretty smart. In one sense of the term intelligent. There’s many ways someone can or can’t be smart. Common sense? No. She lacks it… often. I also know she’s extemely intelligent school work wise. I have met Jaquie in the past.
No I’m not giving anything else pertaining to my identity.
No. 409718
RE: the hand movements and thumbs up–maybe she should study trandlating for the deaf–she has a head start on the hand gestures! Also, if she was really advocating for herself, she'd be exercising, drinking water or GatorAde and wearing compression stockings for her POTS. If she were truly dizzy and fainting, you can be sure she would have both cameras tuned to stage it so she could vlog the staged fall/faint. And Harlow alerting her? It looked like she was just coming to her to be petted. Although she's supposedly feeling better, in today's vlog, Jaquie did manage to mention her heat intolerance, migraines, muscle & joint pain, subluxed hip, POTS and dysautonimia. I need a Ketamine shot myself after listening to her rants!
No. 409804
>>409624“Barbie Car wheelchair”. You win the internet today! I love this
Carry on
No. 409854
>>409850It happened right before the first disconnect.
Even if it was a joke, why would ANYONE want to make that joke. It's just ridiculous.
Also, I found it interesting that none of the robotic hand motions that she does in the regular videos were done in the live stream. That could be just because she was holding the phone, but she seemed much more natural in the live stream than in her vlogs.
No. 409859
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Jaquie has got her pots story all messed up. First of all, heart medications used for pots will only lower the heart rate by about 10bpm. They won't work on anxiety apart from maybe propranolol, which I'm pretty sue she wouldn't be taking. If she's taking additional medications, such as florinef, that would reduce the amount of fainting drastically, especially with her almost continuous IV saline infusions on top of it. Overall, her resting heart rate and heart rate response to posture would be reduced at most around 10-20bpm, which means that if a spike for her is 120, without treatment it might have been around 130-150, which is considered very average for people with pots, not dangerous at all and certainly on its own would probably not cause somebody to faint. (People can exercise happily at much higher rates and not faint). Also, people with pots for the most will faint less while they are walking or moving because of the fact that blood is circulating "moving" around the body. Soldiers faint because of standing for long periods without moving and blood pools in their legs. It's the same concept with pots. So if her heart rate while walking is let's say 140 or maybe even 145 like what she shoes in the photo, I still would not say that would be enough to cause anybody to faint. And if she had blood pressure involvement, I am pretty sure a blood pressure machine with a cuff would be making an appearance in her vlogs quite often as one of her "tools" in the toolbox. Afterall, they're pretty cheap at around $45-80 and can be picked up at any pharmacy. If she does have one, I assume there would be a reason she doesn't show it often, i.e. unremarkable findings.
Sage for medfagging
No. 409873
Also, because the barbie car is coming soon, I wanted to say that the wheelchair "might" be justified if she was leading an active life that she needed to maintain but couldn't. For example, if she was going to college or university BY HERSELF and needed to get around a large campus, perhaps she might consider the need for one. However, her intentions are around the wrong way and I can see her using the wheelchair as an excuse to be and appear more disabled, rather than to use her "tool" to get out and achieve big things that she couldn't do without it but TRIED. Let alone the fact that it will make her issues worse by deconditioning. Having said that, - I am not white knighting her - I know that people with similar findings/ heart rates as her are not complaining and just doing what they need to do as adults and certainly not "fainting" every time they feel slightly faint.
If she was leading an active lifestyle - going to work or college and getting out by herself and being independent - which I am sure she is perfectly capable of - her body would get stronger over time and she would be more capable of coping with these "spikes", which are actually part of normal every day life for people with pots and really not super special at all. She even has continuous saline which would be giving her a massive head start in life above all other pots patients. It would be so nice to see Jaquie talk some sense and truth for once.
>>409868If she jumped up and down, she would get those "highs". There's no way to tell if she's getting true heart rate jumps without her giving us a continuous video without jump cuts. And even if she did have true spikes, how would we know she didn't drink coffee or dehydrate herself? And even if she didn't do those things and still got a reading of 140, it still wouldn't justify a chair, and certainly doesn't justify a chair for her lifestyle.
No. 410158
>>409873Also, don't forget: she is most likely is taking modafinil for her narcolepsy, which could increase heart rate.
I know for a fact that she took it less than a year ago, as she had a label on her pill dose for both zofran and provigil.
No. 410281
>>410275That's what I mean. HOW did she get this approved? In almost no time either. While in the rest of the world, people who are
actually disabled are writing appeals for what they clearly need and making due with wheelchairs that are less suited to their needs. And she gets
everything at the first try? She doesn't even need her chair in the house, let alone sit in it all day. Heck, she doesn't even need the chair every time they go out of the house. And her chair is nicer than that of most people who are actually wheelchair bound? What the hell, Jaquie?
No. 410304
>>410298Oh, absolutely. Insurance doesn’t cover the very best, especially for someone who can walk. And I know some people with eds can handle wheeling themselves, but for most of us, our wrists, elbows, and shoulders are too unstable, not to mention that not walking causes deconditioning and muscle loss, which makes both pots and eds much worse (which is why any good pots or eds doctor won’t okay one for their patients unless it’s absolutely necessary, which it often isn’t. We just have to rest more often and walk shorter distances, although exercise is by far one of the best treatments for both, even though it’s not super enjoyable).
No. 410340
>>410298>I’m sure Daddy probably paid even tricare isn’t that quick to cover a wheelchair.See, I don't think so. I've said it before, but her lies tend to be more spins of the truth or lies of omission, not blatant lies. I don't think she would lie so obviously online, as her family would know what really happened and find out the truth. And if she was just going to lie about everything, she wouldn't have shopped around as much to find a doctor that would give her a shiny new diagnosis or 'tool in the toolbox'. She just would've faked it all. She didn't, that means she is a little more sophisticated (or, some might argue: more sick - psychologically) than some of the obvious munchausen by internet cows on here. She somehow is always able to lie to us by first lying to a doctor so she can sort-of tell the truth to the people around her.
And we've established before that somehow her world just works differently. I'm not sure how, I think she just knows exactly HOW to present herself to doctors and insurance to get what she wants. Also remember, she isn't shy to find another doctor if one doesn't give her what she wants. And if you somehow find a doctor who - for whatever reason - thinks good medicine is getting the most expensive toys for his or her patients and that doctor is trying really hard.. you might get this. Also: she got only a partial coverage, so her dad may very well have paid for the more expensive and unnecesary stuff. (E.g. Jaq said: "I need a really good cushion because I've read that people with EDS are prone to pressure sores and I'm skinny so don't have much meat to sit on.." and daddy asked the nice man of the company what his best cushion was and made sure he understood that money wasn't an issue. And she got the more expensive parts on her chair that way.)
No. 410353
>>410347Yeah. And I hate it. I hate that I am jealous of f@cking Jaquie. Her chair is better than mine and I actually need one because I cannot
walk.
Seeing her drooling all over her barbie car chair, her "I want to see the pink" while she doesn't even know how to properly use one (but why would she? It's not that she needs one and therefore has actual experience witl loaners or rentals) and does
nothing for her independence because she never even leaves the house without a babysitter, her making that poor man film her while she is not propelling right in such an expensive chair that she doesn't even
know is NOT fitted to her body right (again, why would she?) is truly disgusting. It's a new low, even by Jaquie-standards.
No. 410360
>>410353I'm jealous too, which makes me feel disgusted. My doctors want to try PT and strengthening exercises before putting me in a wheelchair… she went through none of that.
The sooner these medical professionals wake up and realize that they're hurting her instead of helping her, the better.
It's funny how she boasts about not having any mental illnesses. Chronic illness and mental illness go hand-in-hand. Hell, they're even doing research into the correlation between EDS and anxiety because so many EDS patients have anxiety.
No. 410366
>>410315Judd is going to remote control her into the pond behind their house.
BEST LINE OF THE DAY! HOPE JUDD VIDEOS IT FOR YT!
No. 410377
>>410366Well it seems that lately, Judd is staring to realize how weirdly excited she gets over certain stuff so I really wonder what he will think when he sees her reaction to the chair. In this video it seems like what excites her most is the color.
I was hoping she would film his reaction to it, but alas. But she'll probably make him tell "the people" what he thinks of the chair anyway in tomorrows vid (unless there is more medical drama first). So I really hope he'll realize that this is not just "Jaquie being Jaquie" or that is due to her autism, but that there is really something weird going on if someone is actually drooling over the color of their wheelchair.
No. 410382
>>410378And you know what? Those things don't come with the chair. So either her daddy, her loyal patreons or her insurance paid EXTRA for it. You know, because she has EDS and gets bruises a lot (that we haven't ever seen, even on Harlow's account where she was in shorts a lot, but hey) or because her legs are always so sore or.. whatever. And the first thing she asks is "what if I can take them off
because I want to see the pink". That's Jaquie for you, guys.
No. 410499
>>410466At least she's paying for it… I would be even further enraged if bitch was getting free massages.
I assume the reason insurance won't pay is that she's not getting massage from say, a licensed physical therapist, and is instead getting them from a generally trained masseuse who comes to her home because she didn't need Babe to drive her to the appointment . Will check next week with a massage therapist friend who works at a rehab facility to see if she has any insight.
No. 410590
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I couldn't resist sharing this gem from the comments on one of Jac's IG posts.
Yeah, gurl, you're a genius….
Sage for off topic
No. 410634
Guy was saying it wasn't waterproof. Jaq: BUT WHAT ABOUT DISNEY IF IT STARTS RAINING?" "well you'll just have to find a dry spot" "can I still go if I change off the power assist wheels?" "Well yeah but… Then you won't be able to propel yourself" you could tell he wanted to say "if you care more about going to fucking Disney in the fucking rain than you do about using your power assist wheels why in the fuck do you need them?"
For real though… This video is the fucking cherry on top. I feel so, so bad for everyone watching who actually needs a wheelchair, whether or not they can't get one, can't get the right one.. to anyone who just needs a wheelchair, this video was very very insulting. Incredibly so. She's so fucking insensitive. Once again she's showing that she doesn't give a flying fuck about what other people might be going through, she's just over the moon about her Barbie car and salivating over all the new pity points she'll be getting in it.
Just hold onto the fact that she'll soon realise that this isn't the Barbie car of her dreams and she'll hopefully feel like a moron. She can't lift it, or drive, or get in/out of her house, or get up curbs, or open doors, or even hold a wheel by itself. Sooner or later she's gonna realise she can't justify her need for this chair.
No. 410676
>>410664Right. She doesn’t care about the function other than how little effort she puts out, and that it’s pink. KIDS barely get excited about having a colored wheelchair, because they actually need them and know it sucks. It’s horrifying and insulting to wheelchair users.
>>410396First story is definitely a must for EDS, even if you’re someone who can walk reasonably far on flat ground. And you don’t go from being fine with stairs one year to wheelchair-bound the next. Eds doesn’t work like that, and neither does pots. Jaquie had no health problems growing up, yet suddenly she’s totally disabled. Even people diagnosed with Eds as adults had issues growing up with different symptoms, just no one connected those.
No. 410690
File: 1509160274006.png (1.4 MB, 750x1334, IMG_4598.PNG)
Harlow has this look like, seriously?
No. 410709
>>410690First, a chair will not help any of those things long-term, if she actually has any of the illnesses she claims (maybe the pots, but not as severe as she says, but definitely not EDS or any mast cell disease, and very obviously not GP, as we’ve all discussed). But a wheelchair is just going to make any problems worse, because she’s going to be losing even more muscle and gaining more weight as she becomes more and more sedentary.
Second, wtf is up with all the posing?? It’s just a toy to her, a very expensive toy for someone who begs for money on the internet. If she really needed a chair, she’d be satisfied with any wheelchair, regardless of color. Also, that’s not a comfortable or even possible pose for the majority of EDS people, since shoulders are pretty widely affected.
And lastly, she can’t go outside or be around people because of her illnesses, but she’s going to Disney this weekend. Where I’m sure she’ll show off her toys and whine and demand to go to the front of the line, with plenty of breaks for her to stuff her face with cutesy Disney junk food.
No. 410725
>>410592I hope this bites her in the ass at Disney. When I went this year, now a wheelchair user (unlike last time I went 10 years ago), I wasn't allowed on certain rides for safety reasons even though I could leave my wheelchair to board.
Though I suspect she only likes Disneyworld because she can show her toobz off in front of her impressed public.
No. 410767
>>410765I might ask my friend who has them about this.
I know powerchairs tend not to be waterproof (well, the control panels) but that's why wheelchair ponchos and covers specifically for the controls exist.
No. 410790
>>410780Reminds me of a kid who plays sick to get out of school, but still wants to go to the birthday party. Nope, if you're too sick to go get the mail from the mailbox Jaquie, Disney shouldnt even be in your thought process. How about setting some useful goals like driving, going to the grocery store alone, or I don't know….getting the fucking mail! But, I suppose Disney does let her compete for Ms. Spoonie Warrior 2017 on a much bigger stage. Make-a-wish kids move over, there's a new inspiration wheeling through downtown Disney.
Geeez, she makes my cold dark heart rage with disgust.
No. 410858
>>410692What does Janiece's service dog do for her?
Re J's wheelchair: I would have been devastated if I couldn't lift one of the wheels because that would mean I couldn't use the chair by myself outside the house.
How long can Jaquie propel her own chair given that she doesn't do aerobic exercise (that we know of) and her arms are going to have to work to keep her moving (power-assist wheels or not)?
No. 410869
>>410863That's the problem with the US system: there are no rules as to who can have a service dog and what level of disability you need to have to be able to get one. Anyone can get a dog and as long it's well behaved and you can tell people it is task trained, (which can be almost anything, you don't even need a diagnosis so you can just say you have a bad back so you can't bend down) you're good to go.
In most countries, there is an application process where either a doctor or an OT assesses if you qualify. In some cases you only qualify if a service dog is the
only option for you (so if you'd say you are dizzy and want to use the dog for counterbalance, you won't qualify because you can also use a cane for that) or you'll have to proof that having a service dog will decrease the (other) costs for care, e.g. you don't need as many hours of home health because the dog can alert and/or help you to undress thus eliminating the need for a carer to come by in the evening. Or you need less pain meds because the dog does certain task that would increase your pain, etc.
But in the US, anyone who has some sort of illness or limitation and likes dogs can start training their dog so they can take it with them anywhere and show off their disability. After all, for some reason the 'invisible illness' crowd want nothing more than to make their illness
visible and if you don't use a walking aid or wheelchair, a dog with a vest seems the best thing to do just that. And even if you're in a wheelchair, a dog makes you more special, of course. I mean, in a way I really admire people who are able to train their dogs so well; I'm sure I couldn't do it. But I think it's really a problem if people can just decide for themselves they'd like a service dog and there is no system in place that regulates who qualifies and who doesn't.
No. 410875
>>410861I'm currently going through Harlow's account because she started that earlier and I wanted to see how it all began. Her POTS symptoms, specifically. I am definitely starting to get a picture myself, but piecing it all together, making screen caps and posting it here.. it's a LOT of work.
I should make a Patreon and make you fags pay for it. With different levels so you get more and more background information as you pay more. I could make a lot of money off of it. I mean, if you guys were actually as gullible as the patreons of J&J. And if I didn't have any pride.
Then it could really work.
I was going to agree with the anon who said that she would never make much money that way, and then I remembered that people are already buying shit for her dogs from her Amazon wishlist. So while it is true that she is
clearly leeching off of her association with Jaquie, it is also kind of working. At least to some degree. Sigh.
No. 410882
>>410858Personally I can't lift my powerwheels either but I don't need to so it's fine. (My house and public transport are wheelchair accessible so I don't need to lift my chair).
But she won't even be able to get the chair out of her own home, which says enough about the amount of freedom she'll gain from this: zero.
No. 410908
>>410903 Personalized outline of a raw diet for your pet
1 weekly email for progress reports & updates
2 monthly Skype sessions
All previous rewards!
No. 410915
>>410861These are her Patreon goals you guys:
Goal #1! When we reach this goal, I will be able to purchase a subscription to Audioblocks so my videos can have more variety in music. They offer a large data base of royalty free music, which will surely enhance my channel!
Goal #2! With this goal met, we can purchase our new camera! We are looking at the Canon G7x Mark ii. It is has high definition video and crystal clear photos, a perfect combo for vlogs and raw diet videos!
Goal #3! With this goal met, we can purchase a laptop. Due to my muscular problems, editing videos at my desktop is very painful. Right now I am borrowing my mother's laptop, but I need my own. When I do not have to share I will be able to do more editing, more videos and better Skype sessions!
So she now wants to buy the same camera Jaquie has because they must be twinkies in All The Things. This whole thing is bullshit but at least she is being honest about what the money is going towards. Unlike Jaquie who claims it's going to accessibility when really she is likely just spending it on herself.
No. 410922
>>410915Erm.. OK. That is the first time I hear her mention muscular problems. And I actually watched her far too long "chronic illness Janiece and Orion edition" part one AND two. So.. does
anyone know what she is refering to?
Also, a laptop is far less ergonomical versus a desktop that is set up correctly. I can imagine someone with muscular problems wanting a laptop to make notes at work or school because writing is difficult, and you can use it lying down to watch videos or read online (but not editing or doing a lot of typing, that is a
horrible position to use a laptop in if you have any problems with your joints or muscles) so.. WHY?
No. 410951
File: 1509212965133.png (79.95 KB, 1048x442, Screen Shot 2017-10-28 at 1.49…)
>>410939Not to mention the ad money. Check out her social blade rankings
No. 410993
File: 1509217124218.png (120.25 KB, 1334x750, IMG_4600.PNG)
And this is what Ms I'll Starve Without Muh Toooobz ordered for dinner at Disney
No. 411006
>>410975>Maybe I cannot fault her for this because the wheel is new (she's still an idiot anyway) but she packed her inflater for the cushion but the guy basically told her she will almost never need it. Also, knowing what you all have shared about the special seat, even if it deflated she would be fine because she isn't wheelchair bound and doesn't get pressure sores.I have basically the same cushion, have had it for at least 6 years and I have NEVER packed the pump not even if I was away for over a week. I pretty sure I didn't even bring it to the rehabilitation hospital were I was for almost six months. So yeah, it's stupid to pack it, it's just taking up space.
I'm not sure if she would be 'fine' if it would deflate though: she would sit so much lower that the proportions would be even less fitting.
Talking of which.. her posture in that chair is horrible. Her back, her legs and even the way she moves her arms is just so wrong. I'd have to look at it better but it first sight I'd say it's mostly the fact that it is way too wide for her and the backrest is either too high to properly self-propel, or it's just too wide at the top so she can't move her shoulders too well. But it seems like she also has to lift up her arms far too much to be able to make the push movement, so I think she is sitting too low between the wheels OR the wheels are too far back. The movement she has to make with her arms to push forward is SO much more than you're supposed to. Power assist aside, good wheelchair use starts with a proper fit and IMO she would actually be much better off with a chair that is far cheaper but actually is measured right. A chair that fits right is easier to push forward
without power assist than the wrong chair is
with it.
Besides all that, it is pretty clear that she has ZERO experience with pushing a wheelchair. That's not a bad thing in and of itself, but it is a REALLY bad idea to 1. have your first 'try' with your chair in such a crowded environment and 2. not have a 'feel' for your chair, how you move it, how it balances etc. before you try on the power support. That's just common sense. Which she doesn't have, of course.
Also: NOW she finds out she can't lift it herself? That's literally the first thing almost all of us (that know a little bit about chairs) have said on here. Duh. I could go on and on, but there is SO much that she should've thought of before starting this whole insulting shitshow. Like how the push handles have to be adjustable to Judds height. She wanted to be an OT, right? Why didn't she consult with one before starting this? Or do her own homework? She would've known everything I just said if she would've done a little bit of research. But of course she was too busy focusing on the PINK. Idiot. Never before have I been so angry at her.
No. 411010
File: 1509219676912.png (128.18 KB, 1248x442, Screen Shot 2017-10-28 at 2.40…)
A Dell Inspiron, really? Yikes.
No. 411019
>>411006Is it possible that the durable medical company knew the chair was going to be too large, so they "upgraded" the cushion without mentioning it so that she sits higher in the chair and the fit appears to be closer to what she needs?
Jaquie seemed surprised at the cushion. And she didn't go back and tell us about why she picked that cushion.
I didn't realize a wheelchair with $5K wheels would simply be delivered to the house without a PT or OT being present to check the chair's fit and give a lesson.
No. 411021
>>411019Is it possible that the durable medical company knew the chair was going to be too large, so they "upgraded" the cushion without mentioning it so that she sits higher in the chair and the fit appears to be closer to what she needs?
If they did, that failed miserable. But I don't think that's the case. First of all foam cushions are available in all sizes so it would be quite possible to give her a foam cushion that would be even higher. Plus it looks like this is the lower version of the Roho Quattro, so it doesn't even raise her that much.
No. 411148
Get the Ketamine and Toradol ready STAT, Doctor! Ms. Resickulous is going to have reoccurring neck and shoulder pain–you know, because of muh Ehlers Danlos Syndrome. At least maybe Babe will get her out of the house now, since she is in love with her new toy but can only drive it up and down the hall of the apartment when she is home alone. And good news for the REAL handicapped customers at Walmart who can use the motorized cart.
Can anyone tell me why she would need the cruise control feature? I am stumped by that one. Cruising from the front door to the patio slider?
I wonder if her Patreons will buy her a wheelchair accessible van, because if she gets much more equipment there might not be room
for PupPupin the car she can't even drive. But first, dear Patreons, can you buy me a Barbie Macbook? Because I like to upgrade each tool and did I mention that I like the color pink? I would also like you to buy me a gastric suction machine so I can suck out the floating-in-oil linguine, shrimp & mussels from the G port of my buh-in–I will try to make do if you can't get one in pink. And I will need a massage package too because muh muscles are really tight and sore from finally using my arms for more than holding a selfie stick and Babe and I can't work the deluxe massage package into our budget. Also, I would sleep a lot better if you could pay for a Serta Adjustible bed, because I am tired from finally using a muscle and oh, yeah, did I mention I have Narcolepsy so I don't get restful sleep? Babe would sleep better too because he has to bend over to push my Barbie car.
As for Paul & Babe watching the shit show, I am sure they are tickled PINK over a little extra YT & IG income from their stay-at-home-think-only-about-myself-dumbshittery-wives (Clairfication: Jaquie is also a thumbshittery wife–kek!) But seriously, if either guy had a set, would they be walking thru Disney videoing their sad-ass wives?
No. 411242
File: 1509246541443.jpeg (160.73 KB, 640x1136, 562E26A4-7B1A-42B3-BD83-15F89D…)
>>411209Well, that means continuous blood sugar monitoring soon for jaquie. At least her doctor would finally get to see that she’s not starving to death kek
No. 411267
>>410951Omg. Really!? Damn.
Did not know I could make that much money vlogging about nothing.
No. 411352
>>411346No no, for about a year she went there at LEAST once a week (more often twice or more) to train Harlow let him get used to the noice. Only AFTER that she wears her headphones there once or twice because "theme parks are especially challenging" and then they dissappear again.
(I am the idiot who took it on herself to dig around in both her public accounts to try to pinpoint how and where it all started.)
No. 411357
>>410993Yes but she can only have a few bites or whatever bullshit….
even a few bites would be hideous for someone with GP severe enough for a tube but hey, she’s too airheaded to realise
No. 411359
>>411009In some cases it might help: if your POTS isn't that severe and the chair is only for special occasions. I know someone who is bound to an electric chair because of severe dysautonomic issues incl pots, and the whole idea with that chair is to keep her feet elevated at all times, so she doesn't pass out as easy.
Generelly i do not think jaquie have severe pots, i doubt she even has pots tbh.
No. 411361
>>411356O wow, didn't notice that. I
know she is a female, but somehow did call her a him. Don't know why, but thanks for pointing it out. Will have to pay more attention from now on.
No. 411366
>>411363Lol, I don't mind. You were right, so hey.
Pointing out typo's is pushing it a bit, so I decided to ignore that one. Besides, English is not my first language so it's easy to misspell sometimes.
Enjoy your coffee!
No. 411394
>>411391I would really like to know what that scoff meant.. You'd think that if she really never ate more than a few bites that wouldn't be something he would laugh at?
>>411381No, apparently it's because sometimes her hands go numb or she cannot use her hands because she has a cataplexy attack. Because if that happens, you don't just wait until it passes, but you have to tell your dog to give your wallet to some lady you don't know. Not to mention that cataplexy is usually avoidable, because it comes on with strong emotions. Except for startling maybe, but I for one never have strong emotions while paying for my groceries. Not to mention the fact that she never goes anywhere alone.
No. 411419
I decided to Google the side effects of some of her meds on a whim.
We know for a fact that she has been using Zofran (on as needed basis, for her CVS), Provigil and Xyrem for a very long time. Plus an anticonvulsant that they talked about stopping but I'm not sure if they did. Meds for POTS and some other stuff was only added last year or even more recent.
If I stick to just the more common side effects that are relevant to Jaquie, we get:
-Modafinil (Provigil): headache, decreased apetite, dizziness, palpitations, tachycardia, nausea, paresthesia and vision problems.
-Xyrem: dizziness, nausea, headache, decreased apetite, loss of balance, paresthesia, vertigo, vision problems, vomiting, rashes, muscle cramps, joint and muscle pain, fatigue, falls
-Zofran: headache, flushing, aritmia, hypotension
And of course, almost all anticonvulsants can cause dizziness, balance problems, fatigue, nausea and vomiting.
Slightly less common side effects of almost all of those meds can also be muscle cramping and weakness. If you start looking at the less common side effects, you get even more mention of hypotension, nausea, rashes etc. Modafinil even has neck pain specifically mentioned. It can also cause increased muscle tone, which for Jaquie seems to be at least partially to blame for her neck pains and headache, maybe even migraines.
Makes me wonder.
No. 411449
This girl-child needs to ask her ATP to replace the batteries in her bullshit meter b/c she can't keep her facts and symptoms straight in her excessive excitement over her Barbie car. She forgot that she can't eat (churro, seafood pasta), forgot that she can't bend and lift (lifting wheelchair herself into the car), forgot that she can't lift her arms overhead let alone spin the wheels on her wheelchair due to EDS, forgot to pass out walking into/out of the Haunted Mansion ride, etc.
Her symptoms are usually present only when she is bored–which is most of the time b/c she has no other interests other than illness and medical equipment and accessories and tests and appointments and service humans and service dog. She's made it very clear that she only wants the diagnoses and toys, b/c she certainly doesn't follow prescribed treatments, such as the compression stockings, exercise program, diet recommendations, etc.
Tomorrow she will be back to being a shut-in and symptoms will predictably flare. Who knows if she is even taking the above meds–there is no accountability on the internet. She is raking in media money for being a professional patient, avoiding adult responsibility and is totally unaware of her own ignorance. She is probably even causing self injury with all of these pseudo illnesses and procedures and will be emotionally injured when the real people in her life bail on her b/c they eventually will get sick of her self-centered manipulation of each relationship.
As for her twin Janiece–different person, same bullshit.
No. 411457
>>411449All that and something else I noticed,
Someone with sooopper severe imbalance and mobility impairments would NOT be able to do those moving walk ways at Disney! I live California and frequent Disneyland and have visited Disney World and I know for a fact that they will stop the moving walk ways for disabled people who need them to board the rides, you can even roll the wheelchair up to (most) rides and transfer or choose to walk on the stooped walkway. I know this because I’m in a chair. I could never walk on those for Christ sake. You’d think it’d be a person with mobility impairments worst nightmare, but she sure looks like she’s doing fine, walking away from her wheelchair waving it good bye.
Sage for blogging a lil but it was pretty relevant I believe
No. 411490
>>411473The Disney disability access pass doesn't work like that anymore due to people abusing the system by a) renting a wheelchair without need of one to bypass the line or b) rich families hiring a disabled person to be a "tour guide" and get them front of line access.
Now, the disability access pass just allows you extra FastPass uses and occasionally allows you to schedule a "return time" equivalent to the current line wait. That can be especially useful if the line is in the hot sun and you have heat intolerance.
Source : self, a (very) part time chair user who rented one for a Disney honeymoon last year. YMMV and disability access rules may have changed since my visit.
No. 411500
>>411496Oh, sorry. I guess I misunderstood!
I'm still trying to figure out why Janiece "needs" a wheelchair (even though everyone knows she's only using one because she wants to be like Jaquie).
No. 411506
>>411490You can schedule a return time to a ride anytime that you want you just can not schedule 2 or more at a time. I go to Disney about once a week. This is for both Cali and FL. What I am referring to is boarding the rides, if you are unable to walk on the moving walkway because of imbalance issues the castmembers are more than happy to actually stop the moving walkway so that you can safely get to the cart without falling. This is why rides “stop a lot” sometimes and dumbasses complain, it’s because wheelchair users are boarding, not cause the ride is broken. Or you can roll your chair up to the cart. I’m not talking about skipping the line.
Sage for irrelevance but I’m defending my Disney knowledge cause I’m a Disney goer!
No. 411509
>>411500Well, you're not the only one still trying to figure that out. She said somewhere that people are going to say she doesn't need the chair anymore, but she still has POTS and she still has narcolepsy.
But that doesn't asnwer the question, of course.
No. 411553
>>411534Never been, have zero desire to go to Disney. I erroneously presumed it was like a haunted house. By bad.
Sage for ignorance.
No. 411585
>>411573Well two things are possible,
Sometimes doctors offices/ therapy doesn’t allow you to film them or in there at all.
Or she didn’t actually go! Both are very possible.
Not wking just stating facts.
No. 411590
>>411573For a while she mentioned a physical therapist that came to the apartment. She never filmed during the sessions but she mentioned them. It's been a reallllly long time since she has said anything about PT.
She doesn't actually film any of her appointments but we definitely get copious details and she films the drive to and from. I seriously doubt she wouldn't mention PT if she was actually still getting it. That's just not our Jaq.
No. 411597
>>411585I have a musculoskeletal disability from birth. Insurance flat out refuses to pay for any sort of physical therapy for me, other than ultrasounds and the occasional "neuromuscular re education" to remind me of the pt exercise I had as a kid, and to do them at home.
If you can physically do something yourself, Medicare and Medicaid will flat out tell you to fuck off and deal with it yourself.
Sage for anecdotal self blogging.
(medfagging) No. 411615
>>411538Okay, eds/pots/mcas/gp fag here, and there is no way I could do Disney, even though I am able to work and don’t use a wheelchair. It’s too hot and too busy, not to mention that I can’t do the majority of the rides and try to avoid anywhere really germy (my immune system is fine, but it’s still sucky to get sick on top of a chronic illness). Also, lots of us with eds have a conductive hearing loss, so crowds and loud noises are physically painful. And paying medical bills is expensive, even with good insurance, so why would I waste money on something that’s exhausting and painful? Not to mention that bills always come first, if I have money left then I can do or buy something fun. I don’t spend all my money and then beg for more from random strangers on the internet. Jaquie doesn’t have a problem with any of those things, and in her selfishness probably annoyed a bunch of people there. Although I do find it hilarious she nearly ran over a toddler.
(medfagging) No. 411624
>>411623So you’re telling me to sage but not the person I’m replying to who ranted about their illnesses/disabilities lol ok
SAGE FOR MY RANT SORRY
(learn 2 sage) No. 411716
>>411648I agree. Speaking for myself, I don't hate Jaquie or wish anything bad for her. She does make me mad, though, because I can see through a lot of the things she says and does. And a lot of people can too. She knows what she's doing and I assume that's why she doesn't address this thread publically. I would, if I was in her position and people were saying stuff that was not true about me. This thread makes valid points though and reassures people who used to believe and feel sorry for her that they are not alone, and they are not terrible people for not trusting her any more.
We know she's not telling the whole truth to herself, doctors, friends, family and viewers. We also know that she does have genuine conditions (we don't know which ones or how many) which don't need to be blown out of proportion and don't require extreme treatments and expensive medical equipment that she has let her whole life be engulfed by.
No. 411933
File: 1509375474361.jpg (65.71 KB, 1172x766, 9d81GwN.jpg)
So her feeds are at 45 now. Turns out she actually may have told the truth when she said that in her post-IVIG vlog she had temporarily lowered her feed rate because she wasn't feeling well. But still, IF she is running her feeds 23 hours a day (which is pretty generous, but if she only turns it off to get dressed and to hang a new bag it's possible, though it's more likely she showers without it and then it'd be more like 22 hours a day. Or LESS of course, if she sometimes stops it for a few hours when no one is looking?) then she is getting about 1500 calories from it. And that is to GAIN the weight she lost when she was without feeds, remember?
Told you guys she was going to slip again, didn't I?
And come on: 45 is too high to be able to condense it to be able to go to day feeds only? That's nuts.
No. 411939
File: 1509376352827.jpg (338.48 KB, 2736x1824, DZushnC.jpg)
>>411937Apparently I cannot embed a video and a picture. I meant to attach this one about what she was eating.
No. 412190
>>412112Medfag here
she only had a scratchy face from what I saw in the video (no redness, no rash…) you can feel itchy literally just thinking about it and it means nothing..
I would be serious if she had severe skin redness/swelling of the tongue or difficulty breathing…
I just think she loves making a big deal out of something minor, she should have waited a little bit and… with that kind of reaction, you don't need IV meds just a pill
*sorry for the crappy english, it's not my main language
**this girl is so annoying, I'm pretty sure she can walk just fine, but since she thinks she can't, her muscles are weak from lack of use
No. 412335
>>412309That's why that 'very rude doctor' who told her to have her port removed said he could not know for sure she actually had anaphylaxis. She was so angry at that because "I have documentation" of four hospital admissions. But to me, it's a sensible thing: too often doctors just copy what another doctor already said, so if something got lost in translation between the patient and the second or third doctor who wrote it down, suddenly what a patient claims or what a doctor
thinks he saw, becomes a fact.
But she was admitted four times with what she called 'relentless anaphylaxis'; repeated anaphylactic reactions. So she probably had them at that time (either self-induced or not) or she had something that resembled it quite well. But I also think that if a patient has one or two true anaphylactic episodes and after that gets a rash or feels itchy and reports "this is how it always starts", many doctors would err on the side of caution and treat it as a severe allergic reaction.
And of course, that might very well be what happened here: she says she is getting itchy and Judd presumes it is a reaction that warrants IV treatment. And of course it happened when some family members were present
and in a public place, which seems to happen a lot, doesn't it? In fact, I wonder if she ever had a reaction when she was at home alone. Can anyone confirm that? If she has just random reactions like she claims (and not to environmental allergens) that would be very odd, considering how often she is alone.
No. 412367
>>412335Like 5+ months ago when she was having allergic reactions every 5 seconds in her vlogs she shows this "not as bad as they usually are" one and claims they don't film all the sooper severe reactions she has all the time (assuming I got the embedded video thing right).
Her asthma and allergy reactions piss me off so much because they just make no sense at all, and they're such common things to have I don't get why she didn't do her homework better on them. I get sometimes she's going for MCAD, but in her newest video she first claims "plant allergies" and that's not how plant allergies usually work?
No. 412437
File: 1509464313533.png (1.19 MB, 1334x750, IMG_4626.PNG)
>>412432She pushed more IV Benadryl in today's vlog - complete with sick face - because supposedly she was having another reaction. Kudos to whichever anon predicted this would return once she could no longer focus on getting the wheelchair
No. 412438
>>412428UNbelievable. I saw a lot of talking about the Smart Drive in the comments the last few days, which is indeed lighter and pretty much IS a cruise control for your wheelchair. But this is that kind of shit you research BEFORE making a choice for a 5000 dollar system!
HOW does she do that? I've had my current wheelchair for almost ten years, I can hardly use it outside because I need a frame that'll absorb shocks better but they told me there wasn't a better chair with the specifications I needed. I later discovered that there is, but the chair was already ordered so now I'm stuck with it. And she is getting ANOTHER 5000 dollar system?
I bet she hasn't even tried it yet and I really wonder if she'll be able to propel with this one. Because the Smart Drive (I'm pretty sure that's the system she is getting now) is not a true power assist system, so it doesn't make it lighter to push yourself. It's just that as soon as you are at a certain speed, the chair will keep going until you stop it. So it's like a cruise control. But that means you need to have the strenght to first push a chair
without any help until you're at that speed.
I've tried the first version of the Smart Drive and I couldn't even get the system to start because I didn't have the strength. And while I'm told the newer version is better, the way that system works means that it can stop working when the terrain is uneven or whatever so when you're going uphill you need to be able to all of a sudden 'catch' the full weight of yourself plus chair at full speed. It is mainly good for people who have enough strength, but not the stamina to propel for a long time. I'm not sure about the second version, but the first version could be detrimental for EDSers: I've tried it and could not stop without pulling my shoulders out of joint.
No. 412447
>>412438Also: she is not propelling right! Her technique is awful and she is using so much more force and movement than she needs to. More so with the power assist, but also without. It's like she doesn't get the concept of how a wheelchair works: you push and then you let it roll and you don't push immediately again when it's still at a certain speed. And of course, her chair isn't fitting for her. But if they would give her a few wheelchair lessons she would be able to already wheel MUCH easier. They should first look what she is doing now and see if they can learn her how to make it easier for her to handle her chair.
Or you could keep ordering adaptations that are over 5000 dollars. That's another option.
No. 412449
File: 1509465090508.png (1.47 MB, 1334x750, IMG_4627.PNG)
>>412437Sick face is miraculously gone after she has those new wheels to be excited about.
No. 412453
File: 1509465211513.png (Spoiler Image,1.41 MB, 1334x750, IMG_4628.PNG)
She also suddenly has the strength to pop a dozen or so practice wheelies in the living room. Miracles y'all.
No. 412457
>>412453Yeah, and she is doing it on arm strenght. You're supposed to do it with your body weight, and only use your hands for balance. I can do a wheelie using just two fingers, lol.
Also, apparently she can change out the wheels herself? I'm pretty sure most people using power assist can only dream of that. I mean, if you're that strong, you don't need the power assist, right? But than again, she could also lift the whole chair when the power assist wheels weren't on, so it's very clear her arm strenght is pretty good. But she can't lift her walker over a bump y'all, because THAT's too much.
No. 412470
File: 1509467849954.png (199.66 KB, 1250x794, Screen Shot 2017-10-31 at 12.3…)
jesus
No. 412548
File: 1509477217476.png (39.86 KB, 899x199, 2017-10-31_1.png)
>>412535If this attachment came in pink how much would you bet she'd be on the phone to her durable medical equipment rep right now?
No. 412557
Any US-based fags around that can tell me how it usually works in the US when you need an assistive device? I cannot get over the fact that they gave her a Twion just because it sounded good (without her trying it out first) and now they're going to order a brand new system for her thinking that will be a better fit. Again, without her trying it out first.
My country is pretty liberal in the coverage of wheelchairs and shit, especially compared to some other countries. I mean, there is no copay for wheelchairs if you qualify for one. But here, it is customary you TRY stuff first, before they order you a very expensive power assist system. It might also be the fact that I myself tend to research the hell out of different options before concluding which one is best, but still. A 'wheelchair guy' will come to your home with a demo model of a system so they can explain it's specifications and you can try it out. And if you're smart you also seek out these companies to try things for yourself. I've tried five different power assist systems: two of them I couldn't even get to switch on (incidentally, the system she has now and the system they are now ordering for her), the other I could move forward but didn't have enough assist for me, with yet another system I couldn't get the chair to move straight ahead no matter how much I tried, and another one was kind a perfect. So you can guess which one I have now.
For me, that's just what you do: these are VERY expensive systems, and you want to make sure you get the one that actually is right for your particular needs. And there is NO OTHER way to find out which suits you than to try it out. I find it very odd that they just decide to order system X or Y based on how it looks on paper, because honestly that doesn't tell you jack when it comes to this stuff.
No. 412983
File: 1509550398976.png (1.76 MB, 1334x750, IMG_4644.PNG)
We got to see her tubie pad today y'all! Because she's what, five?
No. 413040
File: 1509555336624.png (1.33 MB, 1334x750, IMG_4646.PNG)
No Trick-or-Treaters y'all! So I'm just gonna scarf on this KitKat because I can miraculously eat All The Things when I have muh toooobz! I'm just so grateful for this tool! Eye roll for days.
No. 413043
>>413036O, COME ON. She
really lives in a different world than all of us.
The only thing that keeps me sane is knowing a system like that wouldn't work where she wants to use it most: at Disney. It's literally a cruise control for your wheelchair and it doesn't make it lighter to push yourself when you're not using the cruise control option. That means that in a crowded environment, she would just have to stop and start it again every three seconds.
But if she is getting yet another type after she finally discovers that, I'm gonna have to kill myself.
No. 413083
File: 1509560540889.png (1.29 MB, 1334x750, IMG_4647.PNG)
>>413033Pointless is an understatement. She showed us her new toilet paper holder today…
No. 413096
>>413067Because they don't let you watch Netflix at Real College during class!
But seriously, youd think she would love showing off her toys and having "reactions" and "emergencies" on campus!
No. 413157
>>413096It does seem likely that she would do this for more attention, but she also could easily expose herself and or claim that she’s getting more sick because muh immunodeficiency. Not to mention, she would totally start drama by stating that the university isn’t handicap friendly somehow.
Place your bets on how long it takes for her to drop out.
Also mfw it’s a comm degree.
No. 413216
>>413174You know, that’s actually sad? Sage for blogposting but being in uni for 4/6 years has already taken a lot out of me. Then again, course-load of 12 credit hours and then a job will do that…
She’ll either get tired of school, add classes, or drop. Maybe she just wants to be in the barbie chair and do the forsaken “victory” pose in a gown with Harlow, Judd, and her “diploma”. Because muh disabilities don’t make it so I can’t graduate, but I still cannot eat a head of broccoli unless it’s doused in cream sauce.
No. 413233
>>413216She pisses me off so much. I have mildly severe autism, as well as a few chronic illnesses, yet I still work a full time job and go to school half time.
Schools are amazingly accommodating! She could easily take a full course load and if she ends up in the hospital just talk to the disability office! They have ways to make sure your illnesses don't interfere with your schooling. My money is on that she can't keep up with the courses.
No. 413258
>>413157Not a regular follower of her so I could be off, but I think actually going to school would put a wrench in her whole "being sick when it suits me" facade. She can film Harlow getting her silly things all she wants for the sake of the vlog but when the camera is off, my bet is she gets the stupid blanket herself. Can't push her own chair but can lift it into the car with no problem when she needs to. If she went to school she would have to deal with more real people and it would be a lot harder to have to fake being seriously ill/disabled all the time. Other students may pity her but they aren't going to think she is super brave. If her emergencies/reactions start getting in the way of class, people will start to lose their patience quickly. Nobody in college will care that your wheelchair is bright pink. Plus while schools try to be accommodating, I would guess they wouldn't want someone filming all sorts of videos on how disability-unfriendly they are.
If she takes an easy class or two online she can work the "I am so brave I am trying my best to get a degree" angle and still play up the "I can't go to the actual building because I am too immunocompromised" and "look how hard it is to juggle homework and my illness".
She wants to be sick when its convenient for her. Thats easier to do behind a camera that you can turn off and much harder to do in real life - especially because after a while most people get tired of trying to have to accommodate someone who isn't appreciative
No. 413362
>>413258I agree, completely. In addition, I think these people feel like they have nothing else to offer the world. They feel there is nothing interesting or special, and we all know how important it is to be special and awesome in the age of selfies, likes and subscribers. These people know they've got nothing going on so they invent a way to get seen by the world. Then they get addicted to the little bump in self esteem, and a munchie is born. I know we sometimes wonder here why someone would want to be sick, and I really think it's because if they excel at playing sick it makes them feel less lonely because of the ass pats and helps them avoid having to look in the mirror and see plain old failure and/or mediocrity.
Sage for late night pseudo psychfagging
No. 413385
>>413258Kinda stupid in a way though, because creating a following online will attract people with first hand experience of her claims who will eventually call her out, only she has full control over the comments deletion button
She sure does love her buttons kek
No. 413440
>>413258I think something that annoys me the most about her just giving up on her life, staying at home all day, not going to school, and not fucking contributing to society one bit; Is the fact that she acts like she’s such a WARRIOR and her slogan is “keep moving forward”. And all these people comment stuff like “Wow Jaquie you are SUCH an inspiration, and wow such a strong fighter.” But what the fuck is she doing? Watching Netflix all day? Seriously how is that moving forward? How is she triumphing over her illnesses? It makes no sense. She claims to be such a strong advocate and overcomer but she’s literally given up on everything she loves and her entire fucking life. She gave up on taking care of Harlow properly and walking her/playing with her, going to school. Driving, hobbies, a job, interests. Going out. It’s ridiculous! Yet she is praised when there actually are people out here with disabilities who do fucking contribute to society or who are actually inspiring. I understand there’s some sick people who genuinely are housebound but she does not have to be one of them.
Sage for blogging but I hate Jaquie and her image.
No. 413464
>>413440THIS. So much. She is "so brave" and "such a strong woman".. for WHAT? For existing? For being ill? For going to the doctors and "advocating"?
I hate that whole culture where we have to "overcome" our disabilities and just living a normal life, trying to make the best of it isn't enough, but I also hate that doing NOTHING AT ALL makes people brave.. for what?
I am in a wheelchair. Sometimes when I go to the supermarket, people tell me how "brave" or how "good" I am for doing my own f&cking groceries. I live alone. It's not like someone else is going to do it for me. I'm just doing my groceries, like literally
everybody else in that store. HOW is it all of a sudden 'brave' because I use wheels to get around instead of legs? That's not brave, that's simply living my life.
But in Jaquies case, it's even worse, because she doesn't even live her life! Yeah, she is a vlogger. And that's exactly how we know that she isn't doing anything all day. People aren't even calling her brave because she just goes on with her life as much as she can with her illnesses, because she
doesn't even do that.
No. 413515
>>413457>>413457I literally did fucking sage you dimwit. Did you even read the bottom, please and thank you. And anyways I’m talking about Jaquie so it’s relevant to the board I wasn’t talking about myself and at the bottom I wrote SAGE FOR BLOGGING. Read the whole thing before you try and call me out.
Sage for irrelevance but you’re being annoying as f
No. 413518
>>413515Er.. while I did not think of your other post as a blog (so why even say that?) and I also am not sure if it was sage-worthy (I was actually the anon who wrote that I agreed with your post) you did
not sage it. And you didn't sage this post either, and this one
should be.
I am not sure how you think you are saging your post, but you should write sage in the email field. That automaticaly sages your post. You do not have to announce that you saged your post (while I don't see a problem with it if you do either, to be honest, but I know some find it annoying).
No. 413531
>>413525I don't care personally, because I don't access the thread via the main boards as I just use this thread and the OTT spoonies thread. So I never tell someone to sage, but I will tell people
how to sage if they ask. I don't care, but others do and it's a simple forum rule.
Also: what is relevant can be subjective. Personally I use the rule "when in doubt, sage your post". Posting milk of course never has to be saged.
No. 413660
File: 1509649716199.png (2.04 MB, 1334x750, IMG_4652.PNG)
Jaq's most recent sooper safe GP meal. I can never figure out if she's stupid or if she just thinks everyone else is.
No. 413667
File: 1509650484376.png (2.07 MB, 1334x750, IMG_4653.PNG)
>>413660And she got two cookies at Publix
No. 413679
File: 1509651136539.png (1.62 MB, 1334x750, IMG_4654.PNG)
Judd's face while she is taking about a breakdown due to pain. Kek
No. 413763
>>413759Opinions vary, as far as I'm aware. I have to say the way she talks about her illnesses have an autistic quality to it. It is possible she somehow realizes that she can't cope in the real world, and her illnesses are a way for her to control her world.
In the other and, the amount of planning that goes into it al and the scale of her lies would be difficult to keep up for someone with autism. I know it is a bit of a cliche, but there is some truth to the old adage that people on the spectrum are usually honest.
No. 413832
>>413660Holy shit. I thought that she was sharing that with other people. But nope, it was all for her.
And she gave Judd shit for putting a good portion of honey mustard on his chicken sandwich.
No. 413843
>>413660Link to vlog?
BTW fam if you watch the small window of embedded vlogs she does not get ad revenue and you get no ads!
No. 414063
>>413679I can't help wondering if her pain is due to the poorly fitting wheelchair….
and I noticed one person in the comments "helpfully" suggested a SCD machine for blood pooling issues which Jaquie said she would ask about (they're supposed to be for patients who cannot use their legs at all!). Lazy bitch just wants the toys, most people would just wear compression garments!
No. 414075
File: 1509701807295.png (216.82 KB, 1706x752, Screen Shot 2017-11-03 at 7.08…)
Jackie being called out in comments, screenshot of comment attached.
No. 414078
>>414075Bless Alana Roberts, who has the courage not only to call her out but - I assume - to do it under her own name. Unless that is an alias, which I care
nothing about because she speaks the truth. Thank you, Alana.
No. 414084
>>414079That would be even more useless than her tube or stupid wheelchair. No small accomplishment.
I have an idea, Jaquie. Use your muscles.
You know, if we just assume - for the sake of argument - that she was telling the truth about what conditions she has. I
could understand someone in that situation using a wheelchair on certain occasions. A chair that would have to cost less than a tenth of the chair she has now, mind you. Just a normal chair that was fitted properly in which she could propel herself a little bit and would have to be pushed for longer distances - just like she is doing now. I could. IF she would get up from time to time to stretch her legs, walk a bit and if she would MOVE her legs while she was sitting down to prevent blood pooling. It's not difficult. Just lift your legs from time to time, or even use your feet to move the chair forward a bit. ANYTHING to use the muscles is better than doing nothing at all. O, and she'd have to wear compression stockings. She complains she cannot use them because it is too hot in Florida. Well, guess what: summer is over. You say you "love" winter clothing, so WEAR the stupid stockings.
No. 414085
>>414081Kek, I was thinking at that. Trying to find out what time it is in FL to see how long it would take her to take it down.
We'll have to watch her Patreon account, see if she'll loose patrons in the next few days.
No. 414090
>>414088For her supposed EDS maybe? (That's why I see a pain specialist, but that's because I need stronger painkillers than my GP can prescribe.) Though she's talked a lot about not taking pain medication hasn't she?
Also if you're a part time wheelchair user it's really important to use your legs as much as you can! NOT using them will lead to more pain due to muscle deconditioning and the effect this will have on joint stability.
No. 414091
>>414075Which video is this a comment on? I want to see if it's still there.
Plus, I've noticed that when someone calls her out, they quickly get a lot of upvotes. So I want to see how this on is doing..
No. 414100
>>414084A custom lightweight chair with support can make sense for pots or EDS if it means you don't have to be pushed everywhere and get some independence back. This only works however if you can also get to the places where you need to go on your own. Like for jaquie it doesn't make any sense because she needs someone to accompany here since she can't put her wheelchair in her car by herself. So there is someone with her that could just as easily push her. But of course that wouldn't be as special as getting a super expensive chair.
In context: I have a chair with a twion like system that means I don't need someone else to push me. Since public transport is accessible that means I can go out alone. I can't lift it in my car however, so I have someone to push me when I need to use my car.
No. 414117
>>414093Seems like something she'd come up with. Probably the reason why she started with the leg pain well beforehand
>>414106Of course Jaquie can't use public transport Anon, even if the bus stopped right outside her house
No. 414129
>>414117But she could have so many people see how sooper sick she was! Heck, it's one of the few places I actually use a mask.
But then again, she does have a paid nanny to ferry her around to … um, whatever it is she does. Hospital appointments probably.
No. 414147
>>414141She
might when she gets the Smart Drive. Which is suprising really, but apparently she can lift the wheelchair without the heavy power assist wheels. Smart Drive lighter.
But we still have the problem of her not being able to drive. I mean, she can, but she can't. Or doesn't. Or doesn't want to. Or doesn't want to be seen doing it. At this point, who even knows?
No. 414152
>>414147Honestly if she was driving up until recently I don't understand what's changed that means she can't.
And for loading the wheelchair, why not take the wheels off the chair and load it in three parts?
No. 414160
>>414152That's what a normal person would do, but she says she cannot do that because then she would have to be out in the heat for too long.
Like quick release axles take more then a few seconds to remove, but hey. She says she can't, so it must be true. Kek.
No. 414338
>>414336Onions are also out for severe GP.
I'm assuming she's only tasting the sauce.
No. 414502
>>414165Okay, I got curious. She says the chair with the regular wheels is about 20 pounds, and it's obviously a really awkward load to lift. We see her lift it into the back of an SUV in the same scene she talks about barely being able to lift ONE twion wheel. Which leads one to the conclusion that a twion wheel is more than 20 pounds. I did some looking around and the specs on the "fanciest" twion wheels put them at 13 pounds each.
Essentially she's saying she can lift an awkward ass wheelchair into an SUV, but she can't pick up the equivalent of an average house cat.
No. 414513
>>414502Yeah, that's the same thing as her not being able to tip her walker over a very low doggie gate but able to completely lift a wheelchair that is much heavier and more awkward to lift in a much higher car.
Like the other anon said: no use trying to make sense of it.
Like her and Judd having to search YouTube videos on how to pronounce Ehlers Danlos because they hadn't heard of it. But her doctor thought she had it, so he would have pronounced it as well, right? Unless he communicates by sign language or only the written word, of course.
No. 414523
>>414517But then she wouldn't look so ill!
The contrast from 'opening scene' to 'exciting disability news happiness' is extreme!
No. 414628
>>414607Do these people know NOTHING about POTS? You'd think with how much they obsess over their illness that they'd have done a bit of research. It only takes a couple minutes to figure out that the main treatment involves exercise, and that if you don't do it, you'll get much much worse.
Maybe instead of selective listening they have selective researching.
No. 414743
Medfag here to say that what Jaquie thinks is a special-just-for-her pre-IVIG prep and gradually increasing the dosage is the standard protocol for IVIG administration. Benadryl, SoluMedrol and pre and post loads with saline infusions are PROTOCOL! Many times pre-dosing with Tylenol is also protocol (she uses Toradol instead). It is normal to be fatigued, maybe have a low grade temp and a mild headache after the administration but she tends to hyper magnify every symptom. Many IVIG-ers get a sustained physical boost between the 3rd and 5th dose but I don't think Jaquie got that memo.
Being tired is baseline for Jaquie, more likely because she is so under-conditioned physically from staying at home, not exercising and probably from sheer boredom. She exhibits the most excitement over appointments, tests, new equipment or treatments and binge watching TV rather than interacting with people (and I don't mean fellow sickies—she interacted more with her syringes and meds than with her father and aunt at the 10/29 dinner) or having fun during outside activities other than appointments or grocery shopping.
Prediction now is that she will start complaining more about terrible body pain because her pattern is to document her escalating symptoms before she goes to the doctor and she mentioned she has a pain doctor appointment coming up.
Jaquie is a Quack Magnet for docs who are quick to label her with a disease based on her exaggerated symptoms. Some of these docs are more than willing to accept and treat these psychosomatic patients in the name of (insurance) money, rather on diagnosing and treating based on scientific evidence.
Her tag-along WANNBE-LIKE-JAQUIE friend Janiece is escalating her own POTS symptoms now that she has recovered from the gallbladder surgery and now claims she needs a customized wheelchair—review her 11/1 vlog when she is up and down repeatedly decorating the tree and house or the 10/31 one in the kitchen back and forth preparing the raw meals for the dog with no apparent POTS symptoms—but her POTS flares a day later when she has a bigger audience at Disney.
It is not unusual for heartrate to accelerate to 130 or higher in people who DO NOT EXERCISE REGULARLY. Tachycardia alone doesn't indicate POTS. Routine exercise, at least 3 liters/day fluid intake and avoiding becoming overheated is the standard treatment for POTS–not ice cream and wheelchairs. If Jaquie and Janiece refuse to follow the recommended treatment, it is a prime indicator that they are more munchie and generally attention-seeking than truly physically ill.
These childlike girls need to get up off the couch or out of the bed and out of the house and MOVE. Sadly, spineless husbands and gushing YT and IG supporters enable and encourage them to be sickly, weak and emotionally disabled—- physically disabled is still highly questionable.
No. 414842
So I live close to our favorite cow, and let me just make sure a few things straight..
First of all, the apartment complex does not have one story townhouses. I recall her saying they were waiting for one, and well, they are going to be waiting awful long for a place that doesn't exist at this complex. Also, even IF her "illness" was so bad it warrants no stairs, the complex will wave the transfer fee and you'll be moved quickly. This is not a small place, there are units everywhere. All she would need is a note from her doctor (should be easy enough to get considering he will do literally whatever to help our sooper speshul girl out).
Second, this complex is NOT wheelchair friendly. There are steps into every townhome/apartment. I remember a video where she couldn't even lift her walker over a small bump..but I can guarantee you she walks herself over steps every day. Staying with the subject of not being wheelchair friendly, this complex does not have walk in showers. Each bathroom like it or not is either a half-bath or has a tub. Unless Judd is lifting her into the shower daily (which we know he isn't because she would vlog it happening), she is climbing quite the "bump" every day.
Finally, this apartment complex is not cheap. It isn't the most expensive place you could live, but for what rent is in the townhome that Jaq has now she is paying a lot more than she would for a mortgage. I can bet that soon enough she will be asking for money for a house that will need every gadget known to man to be "accessible." I'm actually surprised she hasn't turned down that road yet. Maybe dad will buy her a pink one to match her wheels.
/rant.
No. 414911
All I can say is wow. I recently started instagram to chronicle my cancer, narcolepsy w/cataplexy, DTP, and epilepsy journey and she (or "Helper Dog Harlow") was recommended in my explore list. I made it through six posts and felt both sick and infuriated. How are her doctors letting this go on? And her attitude isn't "inspiring"–it's offensive as holy fuck. I want to get rid of my J-tube so, so badly. To act excited about major life-ruining surgery is criminally insane. To fawn over wheelchair colors is mental. I'd be mortified to be seen in public in a wheelchair; I'm in therapy now trying to work on borderline agoraphobia since getting tubed as it is, and that's largely invisible. The only reason I'd ever feel bad for her is that she's clearly, clearly very mentally ill–but she seems to be loving every second of it so I have no sympathy to offer. The fact that she copies other ill users too is appalling; god forbid a real sick person has an issue that takes attention away from her for a minute. And frankly if she's soooooo sick, how is she able to post so many times between her two accounts a week? I'm having trouble getting one up a week.
It floors me that her doctors are going along with this. Someone needs to sit her down, yank out all her devices (sans super special ketamine), stand her up from her chair, and tell her to cut the crap. And someone please rescue her beautiful dog. I think she's performing those needless tasks under duress.(USER HAS BEEN PUT OUT TO PASTURE)
No. 414954
>>414911What makes you think that the dog is performing tasks "under duress"? I suppose there are a shit ton of jump cuts during the mind-numbing retrieval tasks where anything could happen. I've never seen Jaquie acting threatening or violent towards her dog, or making any comments implying irritation/hints of abusive feelings. As much of a cow as she is, I don't think she scares Harlow into doing anything. Dogs are dogs; retrievers are especially people-pleasing. Aside from the tasks, I do think the way Jaquie manages the raw feeding is atrocious: notice she's scaled back significantly on showing off those pretty princess dog meals topped with "blueburries" and the mango she can't touch.
I know that blogging for relevance could be useful but I didn't come here to read how everyone else can hardly keep up an online presence because they are REALLY that sick (glad you can manage lolcow so much, kek). That particular comparison adds nothing to the topic.
No. 414965
File: 1509806906786.jpg (549.33 KB, 1968x1196, PnHr4W4.jpg)
OK. I went through the Instagram account of her dog because I was curious to see how it all started. Last time I've sorted out how she got her special IV infusions, but I wanted to see when her symptoms started. I haven't exactly found an answer to that question, but I did find some interesting stuff.
First of all: it is WAY to MUCH. I've got 56 pages with posts and compilations. I could of course go through it again, try to condense it further and seek out only the most relevant posts, but that would mean spending even more time on Jaquie, and I am just not willing to do that. Showing so much of it however DOES - imo - allow you to see clear patterns in her behavior.
So for your sanity I would suggest to not read everything unless you're bored and unemployed like me. Read the underlined stuff and maybe - if you think it's at all interesting - my comments.
Also: there's some typo's in my comments. Live with it.
No. 414969
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No. 414971
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No. 414972
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No. 414974
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No. 414975
>>414842By definition a townhouse is more than one storey so of course there would be no one storey townhouses available. She didn't say townhouse she said a one level unit, which
you yourself seem to acknowledge exist within the "huge" complex.
She had an entire vlog about the soooper speshul shower chair she bought from Amazon that allows her to sit and slide into the shower. Jaquie is full of shit on many levels but at least pay attention to what she says before calling her out.
No. 414977
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No. 414978
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No. 414979
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No. 414980
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No. 414982
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No. 414984
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No. 414985
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No. 414986
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No. 414987
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No. 414989
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No. 414990
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No. 414993
>>414965I'll save the rest for later (but soon!)
I need a break, and I'm sure you can all use one, too.
No. 415007
>>415003But she had vivid dreams and sleep paralysis! And false awakenings. That MUST be her narcolepsy, because it's not like millions of people have those things and don't have narcolepsy.
Interesting how the ketamine suddenly has 'worn off' just before she is seeing her doctor. Ketamine can work for many months when it's used for the proper indications. The fact that she had NO PAIN for two or three days and then it came back, is very indicative of a placebo response. And now the toradol injections have worn of, too? At exactly the same time her ketamine has? Ok. Sure.
No. 415039
>>415033Wait, so you DON'T wanna know what's up with Janiece's anus?
I've had that test. It's not a big deal. It's just private. I don't think I've ever told ANYONE about it. As is the case for most of the tests I've had. I mean: who cares?
Janiece, on the other hand, decides to tell the whole world about her poop and her anus. What's most worrisome about all the things she says though? The can't wait to have kids. O. My.
No. 415051
>>415047Who were you subscribed to?
Anyone want more of my "A history of Jaquie" story, or is it already too much for one go?
No. 415072
File: 1509816992931.jpg (566.03 KB, 1968x1196, zthJeEx.jpg)
>>415071Ok. Just remember, you asked for it!
No. 415073
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No. 415074
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No. 415075
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No. 415076
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No. 415077
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No. 415082
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No. 415084
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No. 415092
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No. 415093
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No. 415094
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No. 415095
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No. 415097
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No. 415098
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No. 415100
>>415072Ok, next time will be the last ones. I just need another break, uploading so many pages after another is not the most ergonomically er.. agreeing with me, let's say.
But they will come!
No. 415118
>>414982Oops, forgot to include links:
Link 3:
https://www.instagram.com/p/BCYwL32MxB7/?taken-by=helper_dog_harlow>>415079Link 4:
https://www.instagram.com/p/BGSZpZCMxAU/?taken-by=helper_dog_harlow(screwed up there: 24 is a miss, 25 is the actual 24 and then I should've re-numbered the rest. Not going to do that anymore now, obviously.
No. 415133
>>415092Just to nitpick at all this information, CVS isn’t a disease, and I highly doubt anyone would ever encounter a GE who didn’t know what it was.
Sage for blogging and “fun” (irrelevant) story, but a few years ago I went for an upper endoscopy for what turned out to be severe GERD that presented with chronic vomiting. I hadn’t met my specialist before the procedure, and literally the first thing she asks me immediately after she introduces herself is, “do you smoke weed?” and went on to explain that along with literally everything under the sun (allergies, excitement/anxiety, sinus infections, etc.) smoking very commonly can cause CVS. It can be debilitating but it’s not as ~sooper special~ as she would like people to think.
No. 415137
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Last series!
No. 415138
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No. 415146
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No. 415159
File: 1509821638335.jpg (442.9 KB, 1968x1196, TBVSQIt.jpg)
Last post.
Pfew.
No. 415186
>>415133I think that in Jaquie's case, her chronic vomiting came/comes from ramming those waving hands down her throat to induce the vomiting. Cler signs are the acid stained teeth and the puffy face after a deep-fried meal. Puking causes dhydration which causes drop in blood pressure which causes accelerated heartrate to compensate for the low blood pressure drop which causes lightheadedness and her inactivity causes venous pooling in the legs for ANYONE!
DRINK THE GATORADE, 3 LITERS OF WATER, WEAR THE COMPRESSION HOSE (has AC so no excuse that they make her hot) and EXERCISE! Unless you want to be feel crummy……..no, not our Jaquie…..
No. 415214
>>415146The autonomic testing involves breathing out like that to make you light headed, there is also a part where you deliberately hyper ventilate and the tilting…and she didn't pass out?! She no way has POTS or vasovagual syncope.
Additionally the geneticist likely doesn't think she has hEDS because whilst she might be hypermobile she hasn't got enough of the other symptoms
https://ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf No. 415224
>>415207>>Sage for blogging I guessAnon, I
asked for people with POTS to weigh in on that. So 'blogging' in this context is OK. We established earlier that some blogging is relevant: it is only possible to know that people are full of it when you have some knowledge about that disorder they say they have. And first-hand knowlegde can be especially useful.
So thanks, I was wondering about that! O, and you saged your post just fine.
No. 415273
>>415159Okay so i made it through all of them (thank you for posting anon!!)
My thought is that she might have some kind of problem, but it isn't EDS. Especially the fact that she will just say pain and not joint pain. I find that theres quite some difference between those two.
I find it kinda weird that she's never showing of those "soooper bendy" joints and don't wear any braces or joint support?
also kek, in 53 when she blames her OI for rising heart rate while resting?? I think she made up the wrong symptom for the wrong diagnosis.
No. 415371
>>415349My tests included
24hr blood pressure monitor with diary and specific tasks to complete throughout the 24hrs
Tilt table - this included the breathing out thing Jaquie mentions, deliberate hyperventilating, various tilts (one with venopuncture), squeezing a ball with my hand to make the blood pressure monitor read a specific thing.
I also had tilt pre and post a 'meal challenge' (this was a cup of water with 1g or glucose per kg of body weight, but other people have protein shakes).
I also had a exercise test where I did recumbent cycling.
I had to record my food and drink across the 4 days I was in London for testing (I'm in the UK) though obviously people could lie. However if you're dehydrated then your pre-test BP will be low so I would think that even if you have a postural drop it wouldn't be enough for POTS.
As I said I have vasovagual syncope (normal fainting) so whilst POTS was ruled out I don't know much about it as I don't have tachicardia.
(saged obvs!)
No. 415443
Ok- my weigh in on heat intolerance.
Heat can make you pass out with pots. But Jaquie has medications and iv saline which would bring her fainting down drastically. You’re not going to see someone with her level of treatment passing out from feeling hot, especially with her inconclusive autonomic testing. Her findings are just not extreme enough to explain passing out from simply being in the sun- unless she’s a vampire of course.
As for hot showers and hot kitchens – they’re enough to make any normal person feel queasy. But showers are usually in confined spaces, where it’s steamy, it’s humid and there’s not a lot of air flow- so someone with pots may feel weak and tired from a hot shower and have to lie down and drink water afterwards. It’s possible to faint in the shower, but again, if you had that tendency, you would just have lukewarm showers and it wouldn’t be a problem.
Being outside, in the fresh air though and it just being sunny and warm is not enough to cause Jaquie’s extreme ‘heat intolerance’ and fainting, especially because her pots barely even warrants a diagnosis and she’s receiving state of the art treatment.
My theory is that there’s some sort of psychological involvement- some people faint just by thinking about blood. It’s possible Jaquie thinks about fainting more when she’s outdoors, feels nervous (tachycardia), and so she faints. Or, if she feels warm, she faints as a psychological reaction. To me, that’s a plausible explanation for her fainting.
My final piece of insight regarding heat is something I mentioned before- in my experience with pots, it builds up over time, i.e. over some months of hot weather. The body reaches its threshold of coping and starts becoming run down. A flare of pots like this can last for some time and it can be debilitating- it can leave you bedbound for months because that’s how exhaustion works. I don’t think Jaquie has ever experienced this. If she did, we would know about it.
Sorry for the essay. I have more to say about this. Let me know if you want me to.
No. 415658
The thing about pots is many people suffer with it for years before hand- symptoms usually come to a head and the person is at their worst when they are diagnosed. Then over the coming months to years, with correct treatment and lifestyle adaptions, they slowly get better.
If Jaquie had pots she would have had it all those days she was going to Disney consecutively and all the other places she went dog training. She didn’t seem heat intolerant then, so why is she now? How does she explains all the photos of her at Disney in the sun hugging princesses or with Harlow? It doesn’t automatically get worse as soon as you’re told you have it.
>>415585It’s even rare to be given saline in emergency settings for pots, unless you have a knowledgeable doctor, and even then they’d have to decide if you really need it or can just drink more water.
>>415592 She knows if we found photos of her wearing sweatshirts in the sun, we’d post it here, but there’s enough evidence left that we really don’t even have to.
>>415605To be honest, I don’t know how these cows are getting ports, and how Jaquie got hers so quickly and without a diagnosis and without abnormal autonomic test results. It’s a real mystery. (I’ve saged for blogging). In all my years of pots (5-6 years) saline has never even been mentioned to me even when I’ve been at my worst. She also went from EDS-POTS to mast cell and GP really quickly. She might even own the world record for that. I think the doctor she calls her “POTS doctor” is a quack. There’s a doctor in my country who diagnoses literally anyone he sees with pots with EDS right there in his office, and he’s not even a specialist in the field. I’m fairly certain she has one of these doctors.
On another slight tangent, ports and iv therapy is more commonly seen used for pots in the USA than in any other country. I’m pretty sure it’s too commonly diagnosed in the USA as well, especially with the spread of the spoonie movement on Instagram and munchies gathering large followings “spreading awareness”. In the real world, these conditions don’t operate in the way these cows portray them, and the ways they describe them are based on internet interpretations of symptoms. Anyone who’s ever experienced these conditions will see how backward their descriptions are.
In any case, I have nothing against saline therapy for pots when it’s absolutely necessary- as in the person has legitimate other reasons for not being able to drink enough water or retain fluid and sodium or when the person has trialled literally every medication in the book without relief and their pots is debilitating with objective test results- normal Mayo test results do not count and a quack doctor who placed a port as well as OTT reporting of symptoms does not count. Questionable GP also doesn’t count, along with the so called extreme heat intolerance which apparently never existed for Jaquie all those days in the sun at Disney. And even then, I don’t know if a port would be completely necessary. I’m going to end this here before I move on to the $20k+ wheelchair.
No. 415699
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>>415592I found several pics of her in sweaters outside on her IG. Just a couple of minutes ago. Here's one. I can post them all if you want…
No. 415731
>>415699It really blows my mind to see these old pics of hers. She actually has a sense of style, she looks like a normal young woman.
Now.. I don't mean this to be offensive to those with autism. But she dresses very um.. autistic now? Is that even a thing? It's like she got diagnosed and went from dressing/looking/acting normally, to suddenly playing the part and very OTT.
Now it's all about her SPD. Her whole wardrobe is plain v-neck t shirts, leggings and sneakers. A raincoat if it's wet. She wears headbands that don't seem to fit her age. That's how she accessorizes. She's got sunglasses and headphones and the soft pillowy cover for her seatbelt. All of that, with her medical devices just SCREAMS "special".
If she dressed like that for her whole life, I wouldn't comment on it. But it's so sudden. It actually seems kind of offensive to people who are, as she puts it, #actuallyautistic (I don't doubt she is autistic, just not to the extent that she claims)
No. 415838
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>>415334>>Quick question before I weigh in about her POTS diagnosis. Was she diagnosed by Mayo?Not really. The doctor told her she had orthostatic intolerance. But Jaquie said that he wrote in her notes somewhere that a previous holter test fitted criteria for POTS.
Then later, she was 'officially diagnosed' with POTS by a local neuro. Based on the tilt table results at Mayo.
So it's not really clear, to be honest. What IS clear however, is that the Mayo doc did not think her test results were so clear to tell her she had POTS. Also, there may be a little bit of confusion here as I noted that I assumed she didn't pass out during the tilt table test, as she would've told us so it that were the case. I
know that passing out is not a requirement for the diagnosis. It's just something I pointed out and I found interesting, seeing as she has "severe and special" POTS.
As with almost all of her diagnoses, there is a LOT of going back and forth: Mayo said OI, another local neuro said POTS. Her headache doc (neuro) said she had EDS, the geneticist disagreed. Her local GI says she had GP, the GI at Mayo said she didn't have it but had decreased gastric accomodation. An allergist she saw to look into Mast Cell told her to go away and have her port removed, then her geneticist said she had angioedema attacks and there
could still be a mast cell component, then later they or another doc (I can't remember) said she had MCAD. I only regret that she wasn't active on social media when she was diagnosed with narcolepsy and epilepsy, because I wouldn't be too suprised if those diagnosed would've followed a similar pattern.
No. 415841
>>415443>>My theory is that there’s some sort of psychological involvement- some people faint just by thinking about blood. It’s possible Jaquie thinks about fainting more when she’s outdoors, feels nervous (tachycardia), and so she faints. Or, if she feels warm, she faints as a psychological reaction.I think she hardly ever faints. In fact, she just about said so herself. She wrote somewhere that she didn't know if Harlow would alert to her fainting because she didn't have any fainting spells since getting Harlow, outside of fainting
triggered by heat. And, she adds to that: "and heat is mostly avoidable". She had Harlow for over a year at that point.
She also said that they got the roomba because she
always fainted when she vacuumed. But earlier, she said that she often felt weak and dizzy during vacuuming, and that she 'even actually fainted once'. So that one time she presumably fainted (IF that even happened, of course) went to "I
always faint when I vacuum" very quickly.
I do think you are right though that there is a psychological factor in her feeling week and dizzy. Maybe she even
has BP problems, who knows. But because she wrote about it for SO long, I tend to believe that she indeed was dizzy and/or lightheaded a lot. But that could very well be normal orthostatic hypotension (like MANY people have, and for the overwhelming majority of people it is not a sign of any pathology) OR a psychogenic reaction. She then read about POTS somewhere and decided to go with that. That's my theory, at least.
No. 415981
>>415852>>I could understand one doctor disagreeing with a diagnosis, but multiple doctors disagreeing with multiple diagnoses is more than auspicious. Yes! That's why I posted the whole thing, because although it is a LOT to read through, it
does show clear patterns.
Like you say: it is possible that one doc might disagree with another. Especially with diagnoses like EDS, where criteria are not completey objective (what is a 'soft' skin? How much stretch qualifies as 'stretchy'? Do you use a goniometer for measuring hypermobility or do you just go by looking alone?) and it even seems like some doctors are using their very own criteria. I get that. But when multiple doctors disagree on basically ALL your diagnoses, something is just not right.
The same goes for how she rewrites her own history: I get that sometimes your symptoms just
happen to get worse after you were diagnosed. Coincidence is a real thing. But when it happens every single time, that's very odd.
I also get how you can describe your symptoms different or even
experience your symptoms differently after you discover what's actually happening. This may be a tiny bit blogging but I can't think of another example, but as a child I used to say that my shoulders got "stuck" and I had to twist and turn a little bit until they popped to "unstuck" them. Now I know I was having subluxations, so even when what happens is the very same thing, the terminology I use is very different. I once though I had muscular pain that turned out to be nerve pain. Stuff like that, it just happens. But that's not what we see with Jaquie. Yes, she talked about pain in her legs and later about both muscular and joint pain (the latter in her hips) but she NEVER mentioned a clicking, popping, or snapping sensation until someone in the comments mentioned subluxations. After that all of a sudden she is having subluxations. The same thing happened to her POTS: she had 'low BP'/'BP drops' for AGES but only starts to mention heart rate issues after someone suggested POTS. And with her MCAS: never mentioned allergic reactions and all of a sudden she is "allergic to everything". And, last but not least, with her GP. Her GI wanted to test her "to cover all the bases" and Jaquie even said she didn't think she had it, because she thought her symptoms were explained by her CVS. She rarely mentioned nausea before her GI referred her for a GES, but after that, she suddenly has daily nausea? Also: pretty much ALL of her symptoms seem to have gotten worse after she was diagnosed. Or just before the diagnosis.
I mean: sure it is possible that one or maybe even two of those are a coincidence, but ALL of them? No way.
No. 416021
>>416004>>FEEDING TUBE? That one is a clear indicator on its own. I think it’s one of her, if not her worst offense.Well, it's up there. But how about asking your doctor for IV saline for POTS before you even get that diagnosis? Then going to four doctors (that she hand picked, so it's not like the first just didn't know about POTS) until you find one that will prescribe it and then decide on a port after your SECOND infusion? O, and starting to talk about a port months before you even start with the infusions in the first place? And never trying compression stockings before you start IV fluid therapy?
I'd say that was the worst one. The feeding tube is a good second though. Kek.
No. 416032
>>416025She really wants those day feeds, complaining about the tube kinking because she moves around so much at night.
Trying to justify her fancy adjustable mattress by saying her current bed causes her chronic pain, of course.
Jaquie's mom is moving out to a building across the inlet. I don't remember that being mentioned in previous videos, but I have only been able to stand them in sparing amounts lately. Didn't she move in because it was unsafe for J to be alone or something?
No. 416055
>>416051Yeah, there's no way. She's so frail and her EDS is so sooper severe that she can't even turn her head to the side (supposedly), bend down, or sit in certain chairs. Do you really think she'd be able to take a pounding from someone like Judd, who has to be in decent physical shape for his military job?
Also, if her "sensory processing disorder" is so bad that she can't even wear crew-neck shirts (copying Mary Frey pretty deliberately on that one) or eat weird textured food like bananas, I doubt she'd be putting a dick in her mouth or doing anything else of the kind.
There's no way Judd's getting any. He probably hasn't been for a long long time.
No. 416066
>>416056I think that's part of the point, though? People are are actually ill want to be normal and live normal lives and have normal desires, so they find a way to have sex.
Jaq doesn't want to be well or do well-person things, she wants to be frail and fragile and delicate. Whereas someone who is actually ill needs a wheelchair, Jaq has essentially just opted for one. So it seems possible that she would opt not to have sex because it doesn't go along with her glass-and-paper-body show.
No. 416095
It's pretty much been established that most of what J says is utter tripe, but one thing I don't understand is why all of a sudden she 'couldn't' wear anything other than v-necks when she used to dress so nicely. There are several photos of her wearing round-necked tops on her IG, e.g.
>>415699 but now she 'can't' wear them because of SPD? If she was sensitive to them, she would have been sensitive to them before she was diagnosed rather than suddenly realising she couldn't wear anything but v-necks after her diagnosis.
No. 416100
>>416095Yup! As an adult you just don't buy things you don't find comfortable and you definitely don't wear them.
Did the v-necks coinside with ther port?
Also sensory issues in autism effect everyone differently but the fact she can train Harlow in noisy places and Disney etc is ridiculous. I think she just likes disney because it has the disabled stuff so her disability is constantly highlighted plus the sick kid vibe.
No. 416133
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>>416100Based on her IG she seems to have a preference for V/necks and boat necks. There are quite a few pics of her wearing crew necks tho
No. 416134
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Watch me turn my neck y'all!
No. 416168
>>416095>>416100You don't just develop an intolerance for all types of clothing - although it seems J seems to develop a variety of symptoms after every supposed diagnosis.
Having worked with hundreds of individuals with autism (and still keeping in mind that every individual is different), I have also noted that while its not uncommon for people with ASD/SPD to have sensory issues related to clothes (hate certain fabrics, tags, etc…) I have seen very few individuals who are as rigid as J in that they claim they can only wear one kind of clothes. (I have one client who has a closet full of the same shirt/shorts to wear at home - but even he wears different clothes to go outside). I find it hard to believe that she can't tolerate anything except a v-neck/leggings but that she is able to tolerate the vog-mask, tubiepad, tubes in general. If her sensory issues were truly so bad she can only wear very specific clothes, then they would also be really bad in a variety of other areas (e.g. the kid who can't tolerate shoes on his feet also has very severe texture issues with food and hates loud, crowded places).
No. 416223
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She just has to bring up “muh ehlers-danlos pain” since she’s recently forgotten about it over the excitement of her chair. But she’s obviously bored again, so on (back) to something new (old) kek. So so brave getting all that ivig she doesn’t need and is most likely paying for out of pocket
No. 416226
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>>416223Gotta make sure every line shows in the picture kek
No. 416304
>>416055When I first started watching her vlogs, somebody asked her about this in the comments and she replied that the subject of sex isn't something she wants to cover on her channel at all, etc.
I guess that partly makes sense but it also just doesn't jibe with her usual "spreading awareness and helpful tips" things. Plus, she tells us every other damn thing about her body. Her response just made me feel like maybe they don't have a healthy sex life/relationship in a lot of ways because there are certainly polite and professional ways to talk about those sorts of issues and how they relate to illness, especially when your job is sharing your life. (But maybe Judd told her no, who knows.)
No. 416396
>>416390And then she says, "a little over 7ml, but good to know I am checking it for a reason" eye roll.
How soon before she stops vlogging? They are super short now and contain basically nothing.
No. 416420
>>416417(Cont.)
Decreased volume in the balloon causes the tube to be looser, which means more gastric leakage (so, so lovely. I totally see why munchies want tubes, nothing’s more fun than scrubbing that shit out of your clothes) and the increased possibility of incorrect jxtube placement and even that the tube can come out with much less (or even) no tugging.
No. 416424
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>>416390Jesus, her tube is fucking huge. That’s probably the only reason it hasn’t gotten clogged. Most people have either a 14 or more commonly a 16 fr tube. Hers is an 18.
No. 416443
>>416435I don't think it's a matter of whether or not she can… It's just that she won't. Honestly I just don't see her wanting to. Someone who's so hyper focused on their illness, getting worse and worse, always in pain etc, always exhausted, deconditioned, never aware of what other people want, she's not going to get to bed at night and suddenly jump on babe. Or get jumped on.
Haven't you guys seen how miserable Judd is? But he's resigned to it. The most fun they have as a couple is eating ("just a few bites!") And watching tv.
And let's just say they do actually have sex, it's not going to be good. Jaquie must be the most vanilla girl in Florida. It'd be in missionary but she wouldn't even be able to get her legs up.
No. 416447
>>416223Look at her thighs. She's obviously gained weight. She actually looks a lot different here to how she'd normally show herself. But she's SO sick you guys. She can only eat a FEW BITES
(She's not fat obviously, on any other girl I wouldn't comment on that weight, it looks healthy. But this is Jaq and she's the sickest most malnourished girl on the planet)
No. 416471
>>416445Yeah exactly. She just wouldn't want to do it. And Judd probably never tries anyway, he knows he's going to get scoffed at with a condescending "babe-ugh!"
Now here's a theory.. what if he's gay? Closeted obviously. But I can kind of see it. He might not even know it or admit it to himself. But it might explain why he married someone he knows he's not gonna get any from.
It seems obvious to me that jaq doesn't want to have sex. But now that I think about it, I don't see Judd wanting it either. He seems very childish sometimes, immature. Yes he's got a "tough guy" type of career, But what if that's because he's severely over compensating?
No. 416504
>>416500If there actually was something going on between them I think they'd be more secretive, and way less affectionate publicly.
I think it's more likely they're both fully closeted. that's if Paul is gay lol, which honestly I don't think he is. If anything he's bi. But who knows. I guess we shouldn't speculate…
(Still think Judd is gay tho, have you SEEN those booty shorts he wears? And the fact that he loves cardigans? And maybe, just maybe.. his love for movies starring hot sexy big men is more than just being an action movie fan)
No. 416527
>>415137Not blogging, just responding to OP question about heat sensitivity. I have thermodysregulation from another disease, not POTS. I have a rare, it really is rare, I promise, disease and I don't sweat. I haven't my whole life, so overheating is daily for me. I can overheat when it's 60 degrees out because my autonomic nerve function is fucked in regard to body temp, etc.. So, her being tolerant of 80+ degree weather is a red flag. I literally walk from shade to shade, and can never wear long sleeves or winter clothes unless it's 50 or less. So her being able to wear layers like we've seen is also a red flag. Because it doesn't matter if it's weather causing heat or clothing, or both, it raises your core temp and overheats you, fairly fast, to the point of discomfort but not passing out etc. While it is true that cooking can cause the heat in a kitchen to become intolerable quite quickly, I keep a fan running in mine for this reason, her other reports like not being able to handle a bathroom with no a/c is a crock. And then blacking out, or nearly from it in a few minutes, is not accurate. You can feel yourself starting to get warm, but it takes a sustained exposure to high heat or exerting yourself in lower temps to reach the overheated state she's describing where you have to use ice to cool down etc. And based on her ability to deal with heat, without incident, on all her Florida outings tell me her heat sensitivity is not that bad if she has it at all. And I also live in an extremely hot weathered state.
Sage for the blogging part, but it seemed relevant.
No. 416539
>>416528I have a fave (actually chronically ill) vlogger who does this (though not mega detail) about sex, just clear that it happens and open about things like how first night her now wife stayed over and her carer just walked in in the morning etc. and how when her wife helps her up the stairs on a bad day she still squeezes her bum etc. She is SUPER English though and I think her humour might not reach an internationally audience but IMO she is pretty great at the balance between her actual passions and her disability.
Sage, for obvious reasons!
No. 416839
>>416076there was an anon in one of the munchie threads before J had her own who claimed to know them irl and said Judd isn't the sweet innocent victim of Jac's BS that everyone thinks he is. The only proof they gave was an old twitter with some racist tweets, but we see again and again men who date munchies in the longterm with no apparent gain or reciprocity of care (see: Dani, Robyn).
I personally think people in these relationships, where one person is obviously malingering, can be just as weird and interesting as the munchies themselves. Some like feeling needed and being in a caretaker role, but I think others like having someone dependent on them (ie helpless without them), or the reflected attention of the illness (like munchausen's by proxy). Then there's the argument that they must just get really good sex out of it. Kind of reminds me of the partners/enablers on my 600lb life, who happily feed, bathe and literally wipe the assholes of obese people, and then get really distressed when the person gets healthy and gains independence. From the screenshots above, it seems to me like Jac's symptoms and behaviour escalate to full-time munchie status after Judd gets home from deployment and she has someone to care for/enable her full time.
No. 416920
>>416839>>From the screenshots above, it seems to me like Jac's symptoms and behaviour escalate to full-time munchie status after Judd gets home from deployment and she has someone to care for/enable her full time.I've wondered about that. To be honest it's not entirely clear to me. It is true that it all escalated after he came home. But at the same time, things had been set in motion before that. E.g. her appointment at Mayo was already made before Judd came home.
So while it is true that before he came home she was at Disney almost every other day and was A LOT more active, it's not like things came out of nowhere only after Judd came home. They
did get a lot worse though, and it escalated ever further after that. So yeah, I think there is a connection but I don't think that's all. The fact that she had already made the appointment and was talking about her 'blood pressure problems' more before he even came home can mean two things (and maybe more?) It could mean 1. that she somehow allowed it to escalate more
because Judd was home, or 2. that she planned the whole thing.
O, and thanks
>>416527 for explaining that. The "We had to leave early on my boyfriends birthday (who just came home from deployment and is having his first birthday at home) because the TOILET DIDN'T HAVE A/C" sounds SO OTT to me. Now I know why: because it is.
No. 416944
>>416935Childbirth might kill her??? For real. How. In the same way it can kill any woman? That sounds about right.
I'm sure the doctor just said something like "well it'll always hold risks" and she took that and ran it through her OTT machine until to her he meant "don't do it or you will die!!!"
>>416937Well, telling a patient they shouldn't have kids because it'll "kill them" just because you hold the opinion that they'd be a bad parent would go against a whole lot of medical practice laws, but whatevs.
No. 416948
>>416944I'm just saying it would cross my mind. If it crossed my mind- maybe whoever warned her about not having kids thought about it too. All they'd have to say is having a child may come with extra risks- enough for a munchie to take OTT.
I just think if Jaquie had a child, it would have to be a sooper speshal spoonie and genetic anomaly like herself.
No. 416998
>>416944Well like you pointed out, the doctor probably didn't say what Jaq reports they said.
They most likely said something like, "pregnancy puts a strain on anyone's body and if you're having these difficulties already…"
Also, do you remember what Jaq says whenever she talks about her daily medications in videos? She insists that she takes the bear minimum medication and that everything she takes is really important for her wellbeing. So if she had to come off a few medications before she could get pregnant that alone is probably enough to maybe kill her (if she believes her own bullshit)
No. 417022
>>416935Its also totally possible that her and Judd don't have any desire to have kids, which would probably be best for the hypothetical kids sake.
Not everyone is accepting of the idea that a couple wouldn't want kids. However, you can earn so many more pity points if you claim you can't have kids because you are so super sick. I doubt any doctor would say that having a baby would kill you - I can see them strongly discouraging it as it could be detrimental to your health
Plus the Frey's have made multiple videos about how they won't have kids due to Mary's health and we know J aspires to be Mary
No. 417033
Why would Jaquie ever want a child that would take the spotlight off herself? She has copied Mary Frey on everything from clothes to ports, to IVs, inhalers, feeding tubes and to not having children. Mary's CF causes legitimate infections, blocked enzymes to digest oral food, and true lung/breathing problems, qualifying her port and feeding tube. Mary & Peter have decided not to have children because of the possibility of passing on the CF link and because Mary has a terminal disease and might not be here to raise a child. While Mary is loving towards chidren, Jaquie spends every day trying to be as ill as Mary, which is her mental problem more than a physical one. She could never give the time or energy to a child because she already redirects every conversation and situation with others back to herself and is too busy with her own personal checklist of rotating illness symptoms, complaints and desired treatments to care for a child. She can't even walk the dog! She would be devastated to have Judd give attention to a child.
While Mary has a real CF "team", Jaquie has doctor shopped until she found enabling doctors–Jaquie uses "We" over and over, like she has a team too when she is really alone in her illness world. Judd has 2 jobs, J's mom moved out and works, and Janiece, her only friend is consumed with building her own list of illnesses and YT Patreons to get money. Jaquie dismissed the Mayo docs, who have access to more info, see more cases of, and may not have fed into her chronic illness theory–not all Mayo docs may be equally good, but is it a coincidence that more than one disagreed with her outside diagnoses and treatments? If any of the docs actually said she shouldn't have kids, maybe they were referring to her mental illness that doesn't allow her to think of others. Jaquie puts her own spin of what doctors tell her for the dramatic effect. She has fallen down the rabbit hole of believing she has chronic illnesses–how could she ever crawl out now and have any normal productive life since she has disabled herself?
She seems to have some talent in training service dogs–too bad she can't get her mind off herself–she could provide a valuable service training service dogs for others. It seems her communications degree goal would be to learn how to have better content and edit her YT and IG posts because she can't leave home alone, can't/won't drive and is self-focused, so couldn't get an outside job. A degree would help her get more YT Patreons and income with her social media communications degree. Great goal, Jaquie!
Buckle up–pain doc visit today. Pain meds, injections, orders to rest from her "team" in the forecast. "We think, we decided, we are going to….."
No. 417053
>>416935This is just a load of rubbish.
Blogging but: my mum has spinobifida and she started planning a family before they knew that folic acid prevents spinobifida. So she saw a geneticist and they said it was a 1 in 4 chance a child of hers would have spinobifida (this is the 1980s fyi!). Even with this and bearing in mind my mum is incredibly short, has basically 1 lung, spinobifida she could pass on and what turns out to be in 2017 language EDS (diagnosed aged 60!) they were STILL supportive of her having kids. (Bonus she was on the UK trial for taking folic acid pre-pregnancy and none of us have spinobifida).
Through being consultant led through her pregnancy (in the UK it is normal to just have a midwife) she met loads of other women each pregnancy (3) who had complex health but were persuing parenthood.
I know this is a single sample but I've had it myself even as a single person still in uni where I've seen geneticists and they've talked to me about future family and genetic risk etc. but they've never ever suggested I don't have kids!
No. 417080
It just stupifies me that J thinks she is a chronic illness advocate, informant, advisor, etc. because she only talks about her limitations and what she CAN'T do, never what she CAN do despite illness. Can't eat (except when she has smoothies, fried food, Menchies, etc.), can't lift (except her wheelchair into the car), can't move due to pain (except sitting cross-legged on the floor or turning her arms and neck –see 11/4 vlog when she twists neck & turns in the wheelchiir), can't have noise due to her SPD (but is fine without earphones at Disney), has narcolepsy (but watches endless Disney & Netflix shows), etc. True 'Chronic Illness Warriors' can't decide when and where they will have the symptoms. Load of crap, Jaq!
No. 417082
>>417022With this, I think we should remember they're really young. She's only 21. So she might not want kids now because, well, she's still basically a kid. Maybe in a few years she will want one. And if she really wanted one, she'd manipulate her story to make it seem like it's risky, but ultimately okay for her to pursue that.
I do think it's a legitimate fear, though, that if she had a child in the mental state she is in now, the child would mysteriously need a port and feeding tube and we'd all just be watching a crime happen on YouTube. That would just be horrifying.
No. 417233
>>417033In my area, the main EDS specialist specifically warns patients to stay away from pain specialists. Pain specialists don’t look to treat problems, they just want to cover them up. They often way over-prescribe medication, and can create dependence issues that can become way more of a problem than the pain ever was. Besides, heavy painkillers are not suggested for regular use in someone that young presenting with lifelong health issues, even legitimate EDS shouldn’t use opioids regularly, except for occasional uncontrolled pain. It’s just too much of a risk, especially when physical therapy is just as, if not more, effective. Sadly jaquie’s probably going to get sucked into the world of opioid addiction, and since she’s got absolutely nothing going on in her life, she’s got no reason to recover.
No. 417257
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>>417255And once again she is over the moon about her new toy
No. 417278
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Her dinner on date night with Babe. She acted like such a child, pretending she couldn't possibly figure out what was safe for her to eat. She made him choose the meal. And then claimed (maybe just for the camera who knows) that she wouldn't even try to eat it.
No. 417284
File: 1510078299152.jpeg (23.94 KB, 388x210, C9F09133-67B2-45DC-B78C-522D83…)
>>417277For contrast, here is a fairly hypermobile thumb. Most people with eds can bend their thumbs back to at least a ninety degree angle.
No. 417328
>>417031>>417082Its very well possible that kids aren't even on their mind right now as they are still very young (honestly didn't even realize she was only 21).
If they do decide to have kids, I agree she will likely manipulate the story to make it seem like it is high risk but possible.
If they want to adopt, she is going to likely have to change the story too. I am not an adoption expert, but generally the clearances mandate that you need to be medically stable (and have a life expectancy that will last until the child reaches 16/adulthood). Seeing as how her whole persona revolves about her super unstable medical conditions, which she highly publicizes, I doubt she would qualify (people with disabilities/illnesses can and do adopt - but generally are not the type who spend all their time talking about how sick they are).
I guess surrogacy would be an option. Although frankly, at this time I can't see Jacquie having any desire to have the energy and attention around her going to anyone except herself.
Given their age, I would think kids aren't necessarily something they have really thought about. And its totally fine (and probably best for everyone) if they choose not to have a kid.
No. 417356
>>417278With her first shot in the restaurant looking 'difficult' I though she was having a rough time with the noise in there. I mean,
I found it hard to deal with, and I wasn't even there. And I don't have SPD. Jaquie however seemed unphased by it and just kept talking in the camera.
No. 417425
RE: 7/6 vlog: The common most sensible approach to split feedings is to tube feed at night for the bulk of caloric intake–this allows for an appetite during the day. Her GP symptoms will be worse if she is running a high rate of her beloved Kate Farms AND tries to eat orally, all during the day. Of course, that would be thrilling for her so she could vomit the oral food! (Looks like she has been vomiting, based on how puffy her eyes & face is in today's vlog). Probably needed to vomit if she ate that floating-in-oil food that Babe ordered her.
Didn't she seem a little euphoric today? Maybe thrilled that she got to go to the GI doc. Or maybe it was the anticipation of seeing the pain doc and getting more drugs. Of course, she IS getting the new toy–the expensive bed. Thank you Patreons! Or maybe it was because she got to demonstrate the Barbie car at the restaurant–I wonder if she wore the pink gloves to wheel to the bathroom–but she couldn't just wheel herself to the bathroom, park the w/c, get up & use the toilet–she had to wheel herself INTO the bathroom. I wonder what customers at other tables thought when they saw her injecting drugs in public, what with the opiod epidemic in the daily news)?–SHOWTIME FELLOW DINERS!
Speaking of her illness checklist, she mentioned POTS (too weak to walk, infusions), metabolic disorder (low-for-her blood sugar), pain (hip & stomach), GP (reflux, nausea, tube feeds & pump & showed THE PEOPLE how to inject drugs into her port), and her extreme need for a service dog with crashing blood sugar. She has a few more illnesses on her list that she can mention tomorrow that she missed today.
Maybe her secret "news" is her new shopping list for Patreons to purchase. After all, Christmas is coming for Chronically Crazy!
No. 417447
>>41743560s (or 6.0 here in the UK) is nor odd! I mean yeh, it is odd if you've just eaten but I regularly have blood glucose below 3 pre-meals. I DON'T have any metabolic problems, diabetes or anything related. I'm a bit rubbish at taking my lunch break dead on time etc.
I literally DID have to check my blood sugars and record my food for a few days and they weren't at all concerned, like obviously I wasn't fainting or falling into a coma or anything.
ALSO I get that in America you do have to buy a lot of your medical equipment and that means maybe you just have shops you can buy this stuff in (?) but why on earth would someone buy a glucose monitor or ??? I mean you can buy a shower stool, walker etc in the UK in shops (mainly aimed at elderly people rather than lifetime disabled) and I get you can buy anything online but over here you can't just pop in a shop and be measured for a wheelchair or buy a blood glucose monitor and sharps bin etc?
No. 417451
>>417284My thumb bends back further than the picture and I don't even have EDS.
- Has Jaquie ever shown us her hyper mobile joints? I feel like I could pick any random stranger on the street and they'd be more hyper mobile than her, not just in terms of thinking. Kek
Sage for minor blogging
No. 417487
>>417425It's quite odd that a GI specialist wouldn't recommend night feeds especially if her stomach really is partially paralyzed and she doesn't digest well. Or is this her spin on what the doc actually said and what she actually wished he would say?
>>41725if the GI recommended the Dexcom, don't you think he would know that 60s are not really that low? Or is the Princess fudging on the glucose numbers she is reporting to him?
>>41731Well, her shoulders and wrists certainly move, based on how much she waves them around during her vlogs. And she's no slacker on giving thumbs up! And her oh-so-painful hips haven't limited her mobility sitting cross-legged on the floor (she gets up by herself from that position too)!
No. 417515
>>417435I'm not sure. I AM curious though what her 'news' - that she has to process first and she will get more info on from her doctors in the next few days - would be. My guess is whatever it turns out to be is the reason she was giddy in todays vlog.
And she couldn't walk to the bathroom? Yeah right. Plus she doesn't figure out that standing up from your chair makes it easier to open doors if you "don't know what you are doing"? Besides, opening a door with a
manual chair is easy. Unless it's heavy. I can do it, and I can't reach very far. Hardly at akl, tbh. Closing is a different story, but shouldn't be a problem for her, with normal functioning arms. She's probably trying to do it in the most difficult way imaginable, like she did when she lifted her walker over the doggy gate.
Also: have we EVER seen in ANY restaurant that she was unable to walk to the bathroom? I'm guessing this restaurant is not suddenly three times bigger than the average restaurant she goes to. So she is already limiting herself even more.
Did you guys see Judd's face just past the 3 minute mark, after Jaq said "sometimes me life feels like a circus"?
No. 417538
>>417515Only a few months ago she was walking around walmart and telling us how important it is she walk as much as she can. And occasionally she'd sit because her legs hurt but mostly she sat because muh POTS. Nothing has happened to her legs at all.. and yet now she can't walk to the bathroom. In fact she just had ketamine which completely took away her pain, and is now wearing/worn off… so it makes no sense that she should now suddenly have such severe leg pain that she can't piss.
It's like she's got a switch in her brain. She's decided her leg pain is a problem and now she has a chair (FOR HER POTS, NOT FOR HER PAIN) so
dunk she is now too spoonie to walk ever.
No. 417605
>>417575I think she is talking about a pain flare. She referenced it today/ yesterday 'this flare has just been so bad' talking about a couple of days of pain.
I've literally only heard about 'flares' in bowel disease, as in inflammation etc.
I have hEDS and the related heart and bladder issues and I don't get 'flares'. Things in life impact how well I cope with EDS but the EDS in and of itself doesn't change. I did get more problems around my late teens/early 20s which does seem to be a common thing but I don't know why.
No. 417639
>>417623Also the beighton scale is just one part of EDS diagnostics! You could be able to bend thumb back to forearm on both hands and only get 2/9 for beighton which only checks for generalised joint hypermobility anyway.
You also need at least five of:
Unusually soft or velvety skin
Mild skin hyperextensibility
Unexplained striae distensae or rubae at the back, groins, thighs, breasts and/or abdomen in adolescents, men or pre-pubertal women
without a history of significant gain or loss of body fat or weight
Bilateral piezogenic papules of the heel
Recurrent or multiple abdominal hernia(s)
Atrophic scarring involving at least two sites and without the formation of truly papyraceous and/or hemosideric scars as seen in classical EDS
Pelvic floor, rectal, and/or uterine prolapse in children, men or nulliparous women without a history of morbid obesity or other known
predisposing medical condition
Dental crowding and high or narrow palate
Arachnodactyly, as defined in one or more of the following:
(i) positive wrist sign (Walker sign) on both sides, (ii) positive thumb sign (Steinberg sign) on both sides
Arm span-to-height ratio ≥1.05
Mitral valve prolapse (MVP) mild or greater based on strict echocardiographic criteria
Aortic root dilatation with Z-score >+2
Jacquie doesn't have visible stretch marks or excess skin on her stomach (multiple doctors have assumed I have been pregnant or previously overweight due to my skin!)
saged obviously but she just doesn't have hEDS and loads of people who even DO recieve a clinical diagnosis haven't actually been properly assessed i.e. had an echo, had their height/arm ratio measured etc.
No. 417851
>>417833Only thanks to Jaquie for letting her know! ugh.
Also I'm not saying this is a GOOD thing but in the UK you have to be quite severely underweight to be viewed as malnourished clinically enough to get a tube (or mentally ill/ high risk due to being particularly old or young/ chemo needs you to maintain a good weight.) Her posts go on about being malnourished and her gofuckme is all about how she lost 70lbs but she is ok/low weight now.
If I lost 70lbs I'd be long dead!
https://www.gofundme.com/4jgu0f4 No. 418021
>>417812Aaand her service dog has an IG account, which she writes captions for from her dogs perspective, referring to herself as "my girl" constantly. Just like Jaq.
Get this. Her best friend also has a service dog, another golden. That dog also has an IG, and the dog also has the same vest, different color. Just like J&J.
She also talks about her illnesses the same way Jaq does. "(Symptom) due to my (diagnosis)" repeat x10.
WHAT THE FUCK
No. 418141
>>418136IVIG**^ not icing. Sorry
Sage for stupid
No. 418206
File: 1510115596459.png (254.68 KB, 750x1334, IMG_4714.PNG)
>>418136She is so excited about continuing her adventures!! This chick takes creepy to a whole new level. She really acts like she's Jaquie.
No. 418242
>>417812This girl probably belongs in the spoonie thread so I won't post screenshots here, but it looks like she got sick literally overnight. Not a single post before February 20, 2017 has anything to do with chronic illness. Normal, #familygoals, traveling constantly, #singlesawareness day on Valentine's day and then six days later she gets a service dog and her Instagram turns into:
>#lifewithachronicillness #nocure #pots #potsie #potsielife #potsucks #posturalorthostatictachycardiasyndrome #orthostaticintolerance #dysautonomia #spoonie #spoonielife #spooniewarrior #spooniestrong #invisibleillness #disability #butyoudontlooksick #notalldisabilitiesarevisible #seetheunseen #spreadawareness #advocate #shatterthestigmaShe's definitely skin-walking Jacquie, for whatever reason.
No. 418249
>>418177It’s really depends on whether or not you chose to believe Jaquie about what goes on during her anaphylactic episodes. During hospitalization she claimed several times to be in the unit that was “one step down from the ICU” because she kept getting severe reactions, her O2 was dropping and for a time they even had her on oxygen and/or considered intubation her during an episode.
Could she fake this if it happened as she said?
Probably not. O2 monitors are fairly accurate and even if you hold your breath intentionally your O2 isn’t going to drop enough for doctors to take you seriously. Also if they considered intubating her I assume they looked in her throat which, st that point, they would have been able to visibly see the airway swelling shut. There’s no faking that.
Now let’s say she wasn’t telling the truth and merely kept randomly coughing and saying she couldn’t breathe and the doctors believed her?
Mmmm… it’s possible but I don’t think likely. I feel like any doctor worth half their salt would be able to tell the difference between someone who can’t and can breathe. Vocal chord dysfunction comes to mind as people with this condition often say they can’t breathe and believe they have anaphakyxis when in reality their vocal chords are merely spamming shut. You can even pass out from the sensation of not breathing but generally the sound of your cough/wheezing gives you away and your O2 levels.
So I suppose a REALLY stupid doctor might fall for Jaque faking anaphalaxys. But if she was really hospitalized as often as she clogged and really did need as much intensive care I imagine whatever symptoms she had must have been enough to convince SOMEONE she was legit.
No. 418250
>>417812Omg her friend wrote this on her IG…"Thank you @spoonielife_amanda for being the the Jaquie to my janiece. "
Wow, these girls are WEIRD!
No. 418273
>>418250I feel like backtracking just a little bit. Are there any medfags who know if it's even possible to get anaphylaxis from just touching plants. I would assume you'd just get contact dermatitis rather than full blown anaphylaxis- would it be more likely she'd have to eat the pants?
Also, I'd imagaine anyone that allergic to plants in general would probably have known about it well before adulthood because allergies are typically worse in children?
No. 418275
>>418273hahahah, she's in the hospital chewing on some pine straw to get more attention. the image of that is a good laugh.
some allergies are random in adulthood. typically worse in children, but it's not unheard of to develop allergies/ intolerances in adulthood.
No. 418280
>>418254This is theoretically possible I guess, but not really. What you’re talking about would have to be something Jaquie has a “true” Allergy to. That means an IgE marker*. Now the thing about IgE markers is this
1.) every exposure gets closer to killing you so if Jaquie has exposed herself as many times as she would’ve had to to fake Ana she would probably be dead.
2.) all IgE allergies have to be orally ingested (or so that’s what my immunologist told me) to crate an Ana reaction but not only was she NPO during several of her episodes, the doctors would know she’d ingested something intentionally since there’s a high chance she’s vomit it up during her episode.
3.) Benadryl doesn’t help IgE allergies (not even IV Benadryl) so it would be a dead give away since they would always have to use the epi, and while she does need the epi a lot during her hospital stays she doesn’t exclusively need it.
So all that being said. Intentionally exposing herself would not only be insanely risky but also there would be tells that the doctors would pick up on to catch that.
*although she appears to be a pathological lier I do feel it’s worth noting that Jaquie has said before that she doesn’t have food allergies, which are generally the type of allergies that IgE is for.
No. 418313
>>418273" would it be more likely she'd have to eat the pants"
Oh anon bless you for my mental image of this idiot in a hospital bed chowing down on a pair of pink leggings to set off anaphylaxis
No. 418324
>>416733This is incorrect. French units are roughly equal to tube circumference.
You may be thinking of Gauge units, where higher numbers equal smaller thicknesses.
TL;DR: Her tube is fucking big.
/medfag
No. 418334
>>418301And hospitals don’t necessarily want to push people out the door, especially when the bill is being paid and there
might be other problems and rich family. Hospitals are even more fond of not getting sued. They will also keep people for lots of reasons, including “uncontrolled pain” (real or just good acting), and not being able to eat/drink/move, all of which we know jaquie is accustomed to faking. Basically the same shit she does as an outpatient.
No. 418438
>>418292Sage for blogging I think but I do have allergies and actually I’ve found that my eyes swell in minor reactions (e.g cats) but don’t swell in severe reactions.
I’ve been told this is because the cause of swelling is something called third spacing where your body freaks out and places water in the wrong place so it’s acrualky a GOOD sign if your eyes, hands, feet, etc. Start to swell because that means that your throat most likely won’t
No. 418440
>>418303Tbh I think there are some parts of Jaquie’s story that she isn’t faking and/or has gone to EXTREME levels to fake. And I think it’s more likely she just straight up isn’t faking in some areas. Wouldn’t it be likely that a munchie does genuinely have something wrong with them??? And they’ve just exageres other things for further attention?
I just can’t fathom the anaphalaxys being false. No hospital would keep someone that long without genuine cause and if she was there for some other reason such as not eating she would have gotten her toobz much sooner. No hospital would fall for fake anaphalyxs, in fact, in my experience they are more likely to call a real anaphalactic episode fake than vice versa. And her description of her episodes prior to even being diagnosed for quite perfectly for someone with MCAS (tho I’d course I suppose she could have stolen that from the internet but info on MCAS reactions would be tough to find I think) so all in all, to some extent her reactions had to have existed.
Now where they as bad as she describes? Maybe not, and that could be part of her munchieness. But they had to have happened somehow.
No. 418468
>>418242She also has the very same vogmask (I mean, the SAME, same color/pattern and everything) as Jaquie, the same "infusion backpack" and I'm pretty sure even the same puls ox as Jaquie. And from what I can see (but I'm just scrolling through the account) she also skipped the NJ-tube and went straight for a surgical tube - just like Jaquie.
Creepy. Someone commented on her loosing 70 lbs: that's very possible. She as a big girl.
What do you think: would someone like Jaquie be offended/weirded out by someone so obviously trying to be like her (imo it's much more obvious even than Jaq trying to be like Mary) or would she somehow be honered?
No. 418479
>>417538>>417515Wow the gravity-defying pull that pinned her to the seat cushion of her chair so that she could not stand up and open a door is unbelievable. Is that standard on custom chairs or special order?
Is the sudden ability to eat 30% of her daily intake a portal to an alternative universe thing?
No feeding tube: Can't eat anything at all.
Before GI visit: Can eat 3 bites of potatoes.
Post-GI visit: Doc is confident she can eat 30% of Daily Intake.
Clearly Doc knows she can eat and is not concerned at all about the 3 bites of potatoes after 5 p.m. Perhaps the portal is in his office?
No. 418505
>>418493>>Also likes Disney (apparently works there).Up until now that appears to be the only difference between her and Jaquie: she works.
Also: how do you lose 70 lbs in a few months without your doctors freaking out? Or without you yourself freaking out and begging doctors to do something, for that matter? It's called dissimulation, and it's a part of factitious disorder: deliberately ignoring symptoms and not seeking medical help until it gets very bad so you'll need more and/or immediate medical intervention.
I mean: it's not like she is the kind of person who can't convince doctors to treat her..
No. 418514
Also like Jaquie, she has 'low' blood sugar. Meaning 60, so she needs a tube
https://www.instagram.com/p/BW3aJ7dl3Qr/?taken-by=spoonielife_amandaPlease don't try to understand the reasoning behind that. I'll melt your brain. I've tried it, and now I have #MBS #MoltenBrainSynrome #invisiblebraindamage #MyBrainDoesn'tFunctionLikeYours #NotAllBrainDamageIsVisible #MBSWarrior #ServiceDogToIceMyHead
No. 418523
>>418513Maybe. But like I said: it's not like she is the kind of person who can't get doctors to treat her.
I know it can get bad. It got bad for me. But while I think my GP should've acted sooner, I also think I should've tried harder. Getting treatment for symptoms is a shared responsibility: if you don't go to a doctor or you don't tell them about it, you won't get treatment for sure. On the other hand, if you voice your concerns and keep trying, you just might get referred to a specialist. Sometimes even if you're not sick, as we see here every day.
I don't believe that girl is a copy of Jaquie just by some odd coincidence. So she HAS to be some degree of munchie. And she got herself a surgical tube before a nasal one, which is odd unless there is a very clear indication for long-term tube feeding. And even then, if you need one ASAP, they usually don't bother with surgery but just put in a nasal tube to get some calories in you until you're strong enough to even endure surgery.(1) Especially if you have "immunodeficiency" and "MCAS" and other stuff that can increase surgery risks and delay healing.
So like I said: she is some degree of munchie. So she knows how to get treatment for things she doesn't even have. That would mean that she
definitely knows how to get treatment for things she DOES have, especially with obvious and severe weight loss. So if she didn't go to her doctors earlier and didn't 'advocate' for herself long before she got at the minus 70 lbs point, she either liked the fact that she wasn't heavy anymore, or she was milking the weight loss and deliberately waited until it got worse, or both.
1) OR, of course, until you find a better solution like trying with a dietician what you
can eat to maintain weight so they can stop tube feeds and remove the tube.
No. 418538
>>418529Wait, they are in contact, right? I mean, the person who brought her up said she was part of some giveaway that Jaquie was involved with? So they know each other at least online, even if they haven't met each other at Disney as well.
So Jaquie knows someone is trying to be her? Or is she just too self-involved or autistic to realize what's happening?
No. 418540
>>418532You are making fun at the expense of my molten brain? I am reporting you to the sherrif! ALL of you!
#WarriorsUnite!
No. 418566
>>418560REALLY? OK, I'm cancelling the appointment with the Sherrif as we speak. As long as I get my tiara, it's all OK.
(Sorry, had my kek, I'll stop now.)
No. 418580
>>418514LOL!!! That's what I have…#MoltenBrainSyndrome! If you post the symptoms, I'll confirm that I have all of them. Does #MBS come with home health cake delivery? I want that way more than a port.
From one #MBSWarrior to another….
Sage because it's impossible to milk with #MBS…everyone knows that….
No. 418581
>>418573#MBS comes with a PINK TIARA?? Then, I might be okay without home health cake delivery…
Sage: #MBS, y'all. It's already affecting my work day. ;)
No. 418592
>>418580Yes, it comes with molten chocolate lava cake. What else?
Sage for cake keks.
No. 418605
>>418580Well OK, I said I'd stop, but since you asked for the symptoms, I need to do some #spreadingawareness of course.
MBS can cause any and all symptoms you can imagine. It's a brain disorder, after all. Also, symptoms can come and go. I know sometimes people may judge us if we can't work but we can go to Disney all day long, but that's just how MBS works. They don't understand it.
You want to know how it is diagnosed? It has a very clear diagnostic sign. Sometimes if you are sad or it is windy outside, your eyes will leak. This is the BRAIN coming out of your eyes. Sometimes it happens with your nose, too. Especially when you have a cold virus as well. But of course, this symptom cannot always be reproduced when you are seeing your doctor. This is why so many #MBSWarriors are undiagnosed and why we need to spread awareness so bad.
No. 418606
>>418592That is my FAVORITE kind of cake! I knew I had #MBS!
I am beginning to understand some things. Picking a syndrome is so much easier than consulting someone who actually studied medicine.
>>418598Gofundme…that's how to pay for medical delivery cake! Yes, so smart! But, even if I complain about not being able to eat cake, I can have all I want, right?
My #MBS is flaring really bad. Distraction must be a symptom.
Sage because now I need a molten chocolate lava cake. I will remember not to videotape eating it so people can't ask why I say I can't eat cake while I'm stuffing my face with it.
No. 418619
>>418605Now I'm about to spit coffee! Thank you for Spreading Awareness. You will need an Instagram account, a much whinier tone to your writing, and a billion more hashtags, but you're off to a good start.
Ohmygosh, my brain leaks ALL THE TIME! Since the diagnosis is so clear, I don't think I need to see a doc.
Since I'm distracted from working (totally a symptom), Disney it is. The noise will help me focus.
But, I don't have a half-trained service dog that is either alerting or vying for attention (no one can ever tell for sure). Will they let me in? #MBSWarriors need to be alerted when our brains leak.
I guess I could rent a wheelchair when I get tired, but I don't want to get stuck on the seat and be unable to stand up and open the bathroom door like Jaquie at the restaurant.
I'll just use the neighbor kid's hoverboard as my mobility device, Disney will surely be happy to accommodate me running into people to stop.
No. 418631
>>418619>>Now I'm about to spit coffee!OMG! That's totally a symptom of MBS!
And yes, if your brain is leaking it is clear you have it. No doubt about it. But you'll have to find and MBS literate doctor to confirm the diagnosis.
And of course Disney will have to accomodate you. It's in the ADA. It's totally ableist if they don't.
(Now I'm feeling sorry for everyone who thinks there's lots of new milk with so many posts. Jaqs new vlog is up though, so maybe there's something in there. I haven't watched it yet.
No. 418643
>>418631Oh good, she's getting hip and knee braces
for when she's in pain. As soon as she gets them, she will wear them 24/7 forever.
No. 418661
File: 1510158816762.png (1.47 MB, 1334x750, IMG_4716.PNG)
Screen capped while she said that because of muh EDS the smallest problem can become the biggest issue. Super odd affect for such a statement. For a normal person anyway. Of course she is excited when anyone else would be concerned that that may have to undergo yet another procedure.
And did anyone else notice that whoever drove her to her appts was very carefully cropped out of view? So it couldn't have been Babe or Mom. I wonder if the CNA has refused to be on camera?
No. 418665
>>418647Not to mention muscle relaxants. They are also a very bad idea when you have EDS, unless used very sparingly. (E.g. to get a dislocated joint back in place or incidental use for sleep.)
And a
pain doctor prescribing joint braces? That's just stupid. And she calls him "very knowledgeable". Well, he's not. He is not sticking to his own specialty and that's stupid for any doctor. Plus hip braces are cumbersome contraptions that don't work very well to actually stabilise the joint. Together with shoulders, hips are the most difficult joints to brace effectively. And IF you think someone really needs a HIP BRACE (which is
nothing like a wrist brace or even a knee brace) you sent them to an orthopeadic surgeon or a physiatrist, preferably both. That's not something you presribe to 'helpt with the pain'. That is one of the most silly things I've heard in a long time. Also: patellofemoral pain syndrome doesn't mean you kneecaps don't stay in place, it just means you have pain behind your kneecap. Imaging won't show anything either. If your kneecap is unstable you have patellar instability, and the kneecap is ALSO almost impossible to brace if you
actually have that. And then I'm not even talking about how stupid it is to use braces "for pain relief". If your joint is so unstable it dislocates all the time then yeah, a brace might prevent it from getting worse. You can also use braces for certain activities if that one activity causes dislocations. But if you start using braces "for pain relief", then you'll only lose muscle mass and create even more instability. It's just a REALLY bad plan. She really manages to find the dumbest doctors out there, huh?
No. 418678
File: 1510159964605.jpg (76.07 KB, 2326x254, W5OWWQE.jpg)
Jaquie thinks being able to move your kneecap around without much force means her kneecap is unstable. LMAO, she really knows nothing about the human body.
No. 418685
>>418631God everything is so OTT with her.
>mfw ingrown toenail removal is “surgery,” and I’m so super special I had to have it done TWICE.Most podiatrists I know just remove the toenail when ingrown nail problems persist. My guess is that scars and ports and tubes are okay, but she still goes through lengths to preserve her vanity and not having toenails isn’t cute.
I’m not a medfag, so anyone want to weigh in on the likelihood of her actually having MRSA? She says she’s had the infection for a few months and it just hasn’t gotten better, but she doesn’t really say it has gotten worse either. I just can’t imagine the world’s sickest girl having MRSA for months and not declining in any way.
No. 418702
File: 1510161494660.png (1.52 MB, 1334x750, IMG_4718.PNG)
Miss I Need Pain Injections and a Knee Brace is sitting on her bent leg.
No. 418717
>>418685Definitely OTT - yes, by definition, it is a surgical procedure. But no, your average human being who goes in to have an ingrown toenail worked on wouldn't say that they had surgery.
You can have/carry MRSA without having an infection. However, I would doubt that she wouldn't play that up to its fullest extent since it can lead to sepsis, particularly in someone who is supposedly immunocompromised.
Claiming to have MRSA could be one way to ensure a private room in the hospital (although I would suspect that claiming an immune disorder would also suffice). I don't watch her videos and just go off what is posted here - when she sees doctors or is in the hospital do the medical personnel put on gowns/gloves when dealing with her?
No. 418757
>>418719There are some other legit uses of braces or splints besides cranial instability. Like I said, if a joint is so unstable it dislocates all the time in normal use, you may just prevent further damage by using a brace. But you are right that this is a stupid thing for Jaquie and in general braces should be considered only in very specific circumstances. Certainly not for "pain relief".
My guess is that Jaquie won't end up using them too often, especially not the hip braces. I've never tried one, but I know for sure they are
very uncomfortable. You wouldn't even
want to use those unless the alternative is having daily frequent subluxations or having dislocations that land you in the ER. And I'm pretty sure that Jaquie doesn't have subluxations but a snapping hip, which a brace wouldn't do jack for. Even subluxations or in some cases full dislocations aren't prevented very well by hip braces because - as I said - the hip is just very difficult to brace.
So, my predictions for the next few weeks/months:
1. Jaquie will order all four braces at the same time, without first trying them to see if she can tolerate them with her SPD, 'sooper fragile skin' or if she still fits in her wheelchair while she is wearing them.
2. She will claim that her hip is SO unstable it even subluxes inside the brace (because a hip brace doesn't treat a snapping hip)
3. They will be so uncomfortable that she'll rather use her wheelchair more often and will probably fault her SPD and/or they don't help anyway.
4. IF she ends up using them, she'll only use them when she has a large audience because for some reason she is having a 'flare' at precisely that time.
5. Although we almost never hear her talk about knee pain, she will end up using her knee braces more often than her hip braces. Of course the fact that hip braces are very uncomfortable don't have anything to do with this.
6. Any pain relief she might have from the injections and/or ketamine will not make her any less disabled, so she'll end up using the wheelchair more and more, claiming either instable joints, increased POTS symptoms or maybe something new alltogether.
No. 418784
>>418685Janiece tested positive for MRSA before her surgery and had to use a medication in her nose.
Could Jaquie have gotten it from Janiece, given her immunodeficiency?
And that is all I know about MRSA in relation to Jaquie.
No. 418790
>>418638This #MBS is so much worse than I thought. You are going to have to get two service dogs. One to alert you and/or beg for attention and one to mop up leaking brains. Disney will not like it if you leave brains everywhere. You should probably take an extra does of molten chocolate cake, too. Get a backpack to carry the second piece with you until you are hungry.
Janiece has MRSA, so Jaquie got it from her? Did she mention that on the vlog?
Alright, going to a meeting using my hoverboard, the official #MBS mobility device.
I'll wear my small pink tiara, of course, so no one thinks I'm OTT.
No. 418800
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>>418790Oh no, a service dog really is too blasé at this point. I’d like to suggest a much more durable service animal, which, as you can see, is available in many different breeds and excels at holding (very light) doors open, holding down all those stacks of medical forms and bills and letters of appeal to your insurance to cover treatments and equipment you don’t need, and also can come in handy for bashing more attention-getting spoonies over the head with (very gently of course, we’re really a very compassionate, welcoming group!).
No. 418801
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>>418800Bonus: no semi-monthly trips to the dog park needed! You’ll never have to leave your couch!
No. 418805
>>418786Just like Janiece crying over her GI not being able to accomodate her having to sleep for hours after sedation because of her narcolepsy and cancelling her upper and lower scopes on the spot while she already had done the prep for the lower scope (which most would say is worse than the procedure itself) and then rescheduling it in a hospital because narcolepsy and whining about how her case is so complex because of it and how her body doesn't like sedation and blahblah.. instead of just doing it without sedation and be done with it.
I really don't get how she finds these doctors. A pain specialist giving her ketamine every FOUR WEEKS? Normal protocol for ketamine is once or twice every year. Although normally 'normal protocol' wouldn't exist for ketamine since it's not indicated for EDS-related pain and you wouldn't expect it to work. She was talking more nonsense by telling that the ketamine they gave her for her feeding tube change didn't work for her pain because it was a lower dose and the pain specialist made sure to give her an anesthetic dose. But for ketamine it's a
subanasthetic dose that's been recognized to be useful for pain relief. So again, she's talking out of her arse. And her doctor as well, if she's really telling us what he said to her. And what doctor would want to sedate a patient for a simple intra-articular injection? That's just stupid and unnecessary. Irresponsible. Especially for a f&cking pain doctor who supposedly does these procedures every day. If he's 'not comfortable' to do the injection because her joints are hypermobile, he's just a very bad pain doctor. I'm sorry to say this and I'm not normally this quick to judge, but if Jaq is telling us the truth about him, he is the umteenth quack to treat Jaquie. Not a big suprise actually, since she clearly seeks them out.
Ketamine can have pretty nasty long-lasting side effects as well, like trouble concentrating and forgetfullness. I for one wouldn't be comfortable getting it every four weeks. But Jaquie doesn't care. As long as she is special.
No. 418806
>>418790Yes, I’m sure the two of them have swapped saliva at some point (anyone else suspicious there’s a little more going on there? Really, whatever makes them happy, just don’t keep stringing the hubbies along!)
And, my dear, don’t forget your sash. Otherwise, how will we know you’re a true hospital princess?
No. 418817
>>418812You don't have to tell me that, but according to Jaquie her doctor wants to have her sedated because they have to use a scope because she has 'weird anatomy'.
I really don't get how ALL of her doctors want her asleep while they do any procedure. O wait… I'm getting there. It's because of her yapping, of course. And since she has good insurance/a daddy they probably will get their money no matter what they do, so why not go full on sedate her for having her nails clipped? At least she won't be able to film it and she'll be silent for a change. Never mind the extra risks and the fact that it takes longer to recover, right?
No. 418839
>>418817oh my christ, she's getting knocked out for toenail surgery?!!?! For an ingrown toe???
I'm starting to think that the root of all of this is she's such a spoiled baby that things that would be a slight inconvenience to the rest of us and we could just go about our day in spite of them become huge deals to her where she has to get a diagnosis to explain them, a special doctor, and all these unnecessary procedures and pink accessories.
A sore toe becomes a MRSA infection requiring surgery with sedation. Headaches become chronic migraines that need special sunglasses. Being tired becomes narcolepsy. Getting a little dizzy when you stand up suddenly becomes POTS needing a custom wheelchair. Lactose intolerance and/or bulimia becomes gastroparesis requiring a feeding tube. etc.
No. 418886
>>418839THIS. PERFECTLY stated.
The over-exaggeration of the issues she probably legitimately has is the main problem, in my opinion. I mean I could make a freaking huge deal out of the issues I face every day, but I don't because it's a waste of money and a waste of people's times. Plus, that's something only an egomaniac like Jac would do.
Sage for a bit o' blogging.
No. 418918
>>418886I think you might be right. If you look at her history, we see that a lot of her symptoms were present for a long time before she got some sort of diagnosis. She had dizzyness/low BP for ages, had leg/hip pain for a long time, etc. Dizziness and lightheadedness especially after standing up is a VERY common symptom. Normal people just accept that it is a part of everyday life and stand up a bit slower next time or grab something until they aren't seeing black anymore. Same with pain: many people have aches and pains. But unless they become very severe, you just accept that you're not build for certain types of sports, or that your muscles are sore at the end. Maybe your muscles hurt whenever it is cold outside. You can either go to a rheumatologist and get a fibromyalgia diagnosis, or you accept that winter makes you hurt a bit. I can think of a lot of things that could be a 'symptom' of whatever disorder if I wished to blew them out of proportion. But most people don't want that, so they just accept that some things in your body feel uncomfortable from time to time. If however you are like jaquie and you think the world revolves around you, you go to specialist after specialist until they find something that can "explain your symptoms". And of course, the more testing they do, the the higher the odds that they'll just find something by chance alone. And before you know it, you have not only an 'answer' in the form of a diagnosis for the symptoms you came with, but another diagnosis as well. The more diagnoses you have, the more testing and the odds of other incidental findings increase even more. The more diagnoses the more meds and other treatments, and then you get side effects and other adverse reactions and that creates another "symptom", which can be the starting point of a new part of your 'journey'. And so on.
No. 418968
>>414990Sorry, just catching up on this . Stellar work, anon!
I like how on 04/02/16 Harlow was a miracle worker for migraines, epilepsy, narcolepsy, asthma (because who can be fucked to just put their inhaler in their backpack?) and low blood pressure…. but just TWO WEEKS later she's mastered cyclic vomiting syndrome, muscular pain and weakness, and balance problems!
I get the feeling that Jaquie is reading a lot into dogs' natural desire to prod people with their noses and lick and paw them for attention. I'm not doubting she's a good trainer, but this is the service dog equiv of someone insisting their child can say full sentences by the age of 1.
No. 418987
>>416051I'm "fragile" in that I've frequently dislocated joints while having sex. The answer is LOTS AND LOTS OF PILLOWS EVERYWHERE. And then more pillows.
Also spooning. But honestly, Jaquie doesn't really strike me as interested in sex. Judd seems more like a chauffeur/cameraman to her, and anyway he seems to prefer the dog.
No. 419008
>>418918Yes, it's definitely true that the more medication you're on, the more side effects come into play. There was a Munchhausen by proxy story in my town (it actually turned into an HBO documentary because it was so messed up) where a mother convinced people that her daughter had cancer and all sorts of other crazy illnesses and the chemo and other extremely strong drugs she was taking caused her to lose her teeth and other very serious side effects. The girl ended up having her mother murdered because she couldn't live that way any more. It was quite a sad story. But back to the topic on hand, the more medication she keeps pumping into her port/feeding tube and the more sedentary she becomes, the more she will have REAL health issues that can harm her for the rest of her life.
Aches and pains are a fact of life. Headaches are a fact of life. She's almost obsessive with every tiny little symptom her body exhibits and feels like it needs to be treated. I want to just tell her one of my favorite sayings - "SUCK IT UP, BUTTERCUP!" kek
No. 419040
>>418968I’m aspiring to be a dog trainer one day, hopefully specializing in service dogs and I can definitely say that Jaquie is full of BS when it comes to the majority of Harlow’s alerts. Not only will a dog most likely not pick up on SO many problems (if she’s constantly having an episode of something how is the dog going to alert??? It’s imposible) It’s also extremely stupid how, as another anon pointed out, she generally acts annoyed at Harlow wanting attention and then JUMP CUT to “ermegherd Harlow just saved my munchie ass.”
Rule number one of training a medical alert dog - ITS NOT AN ALERT IF ITS NOT OBVIOUS.
Example - I know a dog that alerts to vomiting spells (anxiety induced), syncope/bp drops, and allergies. But each alert has a different tell. Why? Cause it has to be obvious that the dog is alerting or else it’s useless! Yet Harlow seems to have the same “alert” for everything - getting in Jaquie’s face,
Additionally, an alert isn’t an alert if the dog hasn’t been shaped to do a specific command. E.g, the dog above has been shaped to paw the owner repeatedly for vomiting, bark for impending anaphylactic episodes, and nose bump for syncope. Does Harlow have certain tells?
NOPE.
Therefore I conclude that at least the vast majority of Harlow’s “alerts” are either total bullshit or just a dog being a dog and getting inquisitive and SOMETIMES she happens to do this when her owner is feeling more sick than normal. Which isn’t a surprise considering that Jaquie is ALWAYS feeling more sick than normal.
No. 419055
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Sorry but I just found this photo on her Instagram. The date is only this past May 10th. So tell me.. how can this bitch go from literally bending like this.. to needing a wheelchair full time? She also says she needs Harlow for bending over but here she is clearly bending her precious KNEes that she needs “braces” for now. It’s like she puts herself on blast lmao.
No. 419127
File: 1510191348436.png (1.16 MB, 640x1136, IMG_1732.PNG)
This seems….. woo-ey.
Medfags?
No. 419137
>>418292Eye swelling - I became allergic to something this year, which I wasn't allergic to before. My eyelids swelled up (and my lips). I was told by my emergency doctor to avoid that particular thing completely from now on as it would only get worse with each exposure and end up as full anaphylaxis.
saged for blogging, but it seemed relevant?
No. 419138
>>418480Awww but insurance won't pay for her "special nutrition". (Yes it's "Nutrition", because she wants to be Jaquie).
TBH I can picture Jaquie's followers tearing shit up on this girl.
No. 419256
>>419252Thank the fucking Tories for slowly starving it of funds to ensure they can privatise it, more like.
Soon we'll be able to get our private rooms… if we can stump up the cash. The dream is over.
No. 419393
>>419322To be honest, the very fact that she didn't make a big deal out of it struck me as odd for Jaquie. Apparently she has had two procedures on it last year, that was just before she started vlogging but she was already on Instagram. She is having problems with healing, with according to her is due to her EDS. So she has a wound or something like that that won't heal for about a year. She also has had several courses of antibiotics for her toe, antibiotic cream, etc.
Yet she never mentioned it before today? Jaquie, who shares EVERYTHING with 'the people'? Yes, it is just a toenail, but it is an infected toenail that won't heal for almost a YEAR and that she has had many pills and creams for. It doesn't seem like Jaquie to not milk something like that. Any theories as to why she hasn't done that?
I can think of one partial explanation: she said one of her docs said she was immunocompromised because she had to have antibiotics "three or four times last year". If that was for her toe alone, that makes it less special. But I don't think that is enough of an explanation for our munchie queen not to milk her "delayed healing" and "therapy resistant infection" to the max.
No. 419395
>>419360No, it's er.. something the genetics diagnosed. I think. All sorts of terms have been mentioned, I'm not even sure. I'll try to find that vlog(s) in which she mentioned it.
This one, and I think there's more. But here's a good start:
https://www.youtube.com/watch?v=tTdpc8eAbyo No. 419406
>>419198>>419237In the NHS you do get tested every admission though, the nose and groin swab. I don't actually know what they do with those swabs but every. single. time.
>>419256Yep 100% the government not the NHS!!!
No. 419408
>>419360EDS isn't related to immunodeficiency. Following an injury/ surgery you heal slowly so things like dissolvable sutures aren't recommended (silk sutures are) because they'll dissolve before the wound is healed. Additionally wound closures like steri-strips are mostly useless or result in a really wide scar.
But other than the fact the longer a wound is open the higher risk of infection (totally manageable just got to be on it with wound care) EDS and immunodeficiency aren't related conditions.
No. 419411
>>419399No, I said it wrong. That wasn't the reason they said she was immunocompromised, it was just something they pointed out that it was a sign of it. Watch
>>419395 that YT video from about the 6th minute.
No. 419412
>>419411Watching that video, she said that her doctor told her that while it takes time for IVIG to help regulate her immunesystem, her POTS should improve "right away".
Hm.. we haven't seen that happen now, have we?
No. 419449
>>418482I thought that
maybe he caught on and is trying to wean her off of tube feeds? Probably not, as he has up until now proven to be quite stupid. But because he told her to not stop eating and that she'll have to eat at least 30% if she wants do to day feeds only (which she wants so badly) I thought
maybe he is trying something?
Maybe he knows that he won't get anywhere with her if he just tells her she doesn't need a tube and is trying to slowly get her to eat more? I don't know. But I thought that maybe the fact that she got another doctor to prescribe her extra bananbags to 'hold her over' when her tube wasn't working and the fact that she stopped eating alltogether (though I'm not sure he knows
that) has opened his eyes? Just wondering.
No. 419469
>>419393I wonder if it's as simple as ingrown toenails aren't sexy (in her mind). They don't fit the #spooniewarrior thing she wants to project so she doesn't mention it at all until it comes with a doctor's appt she can't avoid mentioning because she's vlogging. It's the same way she exaggerates the 'symptoms' she has. She's all about manipulating what she puts out there to create the image she wants to portray.
Although I'm she if Mary Frey started having ingrown toenails then we'd have a whole playlist of Jaq's toenail surgery journey.
No. 419476
>>419395In this vlog
https://www.youtube.com/watch?v=tTdpc8eAbyo [DL][Archived Copy])
she states the geneticist says she is the ONLY ONE IN THE WORLD with her type of immunodeficiency. WHere are the journal articles on this rare specimen of a person? Maybe she is on the only one that that particular geneticist has seen. Her numbers sound marginally elevated at best.
The whole Jaquie Shit Show is that everything she supposedly has been diagnosed with is so rare and unique and needs super particular treatment because she is supposedly such a rare specimen. She contradicts so many things, such as when the GJ was malfunctioning, she suddenly couldn't eat orally but the minute it was fixed, she could eat her shitty choices again, she couldn't run her tube feeds at the recommended rate due to bloatimg and nausea, but now she can suddenly double the rate because she wants day feeds only, she can't lift but she lifted the damn wheelchair into the car, etc. As for her freaking toes, who knows if she even used the antibiotic ointment–after all, she got called out on her tube feed rate and her GP flubs–"can't eat y'all, then films outrageous choices of meals".
But the most damning thing is the pain claim. If she really had the excruciating pain that she claims, she wouldn't be waving her arms at Disney, on the floor cross-legged with the dog, etc. Begging for pain meds so frequently is such a detriment to the young people who follow her and for those who can't qualify for insurance covered pain meds—and Ketamine is also a street drug–originally used in veterinary offices–and highly addicting, so those who can't get it legally might seek it illegally since she raves about it so much. Overall, she is a complete shitastrophe in almost every aspect. ANd so are th people who enable her.
No. 419521
>>419322 Oh come on,
>>419314 was funny. And even though she hasn't mentioned it before she did kind of make a big deal out of it because she can't be like 99.9% of other people who have a similar issue, she has to go to the hospital for general anesthesia.
No. 419547
>>419537Ok, I watched the vid. They are discussing seperate G and J tubes to prevent kinks because of her 'weird anatomy'. Jaquie isn't sure about it, because the surgery wasn't easy on her and J-tube surgery is more difficult than G-tube or GJ-tube placement. Judd also doesn't like the idea, but her mother wants her to have it done because she saw how bad it got when she couldn't run nutrition (and somehow also couldn't eat orally anymore) the last time her tube was kinked.
So I'm trying to figure it out. For one thing, I don't understand why they can't just change the tube the next day when it kinks. If it's really necessary they can fit you in sooner.
Apart from that, I'm not sure
why Jaquie is hesitant. Is she a) actually sensible? b) it is the fact that she's a crybaby and she can't take pain (like we discussed yesterday)? Is it c) that she can't milk the kinks anymore if her tube can't kink or d) that she secretly hopes she'll get TPN when she can play up the "my body doesn't heal well so surgery is out" together with the "my tube kinks often because of my 'weird anatomy'"?
Or is there something else that I'm not seeing? Because you'd think that someone like Jaquie would jump at the idea of having a second tube, and also being able to use TWO pink tubie pads at the same time.
No. 419558
"We" got quite a belly laugh over the dog drinking water–it was an adventure that Jaquie sadly can't personally take to fill her own tank. I'm not sure if "we" laughed harder over the water bowl or the Squatty Potty. Judd may need a urinal since the bathroom is going to be full of her equipment. "We" are getting a new $5000 toy for the bedroom tomorrow! I am sure there will be wild action there because she's gonna be really hot with her 2 tubes, port, hip & knee braces, walker, wheelchair, gloves, backpack, headphones, heating pad, icepack, pumps, vog mask, etc.
The Anatomically Unique Sicko can now one-up Mary Frey if she gets 2 tubes–the new one in the exact spot that Mary's is located (Mary's has an enlarged spleen requiring this location). "We" are going to think about it because "we" need to space out all of the procedures so "we" can get the max amounts of Ketamine anesthetic. "We" might be having an adventure in rehab soon. But "we" can get jazzed about more Ketamine if one or both tubes block so that makes indecision about poking another hole in the belly a gamechanger.
Nice to have the Patrons fund her Amazon shopping spree. Time to start a new shopping list.
So happy to see that her excruciating pain is better so she can reach up high to dust and bend low–joints are better overnight? "We" just have a helluva time remembering all the symptoms to display.
No. 419566
>>419537How does she allow the dog to rub its snout onto things which go directly onto a stoma?!?!?
Are you guys sure the tube n shit is not completely fake?
No. 419578
>>419476>>419395I have wondered about her being "the only one," too.
Question for medfag:
I know very little about genetic markers. Is it possible that many people have the same marker but it's just not symptomatic?
Question for current/former athletes:
I believe many former athletes could munchie their way into an intense, time-consuming, multi-specialist attempt to attain total pain relief from residual pain that nags even years after retirement.
J has a black belt in martial arts, so couldn't some of her pain be residual from that practice? Which of her symptoms could be attributed to years of martial arts?
No. 419593
>>419588He's got more to do with creating the shittery than anyone here gives him credit for.
I get bad vibes from him, and him and J are always passive-aggressive towards each other.
It's strange how the majority of her symptoms and conditions started/worsened when she got with him. It's even more strange how both him and his best buddy have spoonie gfs with the same ailments.
He's murky af.
No. 419596
>>419593So what's your theory? He likes his girlfriend to be helpless? It's a cry for help on Jaq's part because he's abusing her? Something else?
What are you saying, precisely?
No. 419603
>>419596I think they're simply playing things up for the money. Even downright lying and pretending.
That what they do on camera is nothing like what goes on when the camera is off.
And that the entire family is in on it.
No. 419604
>>419596Have to admit, I didn't think of that one. Some of her shit makes more sense if you look at it like that.
On the other hand.. Judd seems so over it sometimes, and even more so the last few weeks. Wouldn't he do more of an effort if he was in on it?
No. 419610
>>419604Not necessarily.
I bet like all the policemen I know, he's so over everything that happens on that job, but still does it. Same with the vlogs.
No. 419621
>>419578Yes, your experience is helpful. I think it's along the lines of what I'm thinking. I'm guessing that if you didn't have symptoms, your family would never have been tested for the mutation? Or, in other words, would have never known?
How much testing has J had that no one else has had, leading to diagnoses that normally would have never needed to be identified?
Thanks!
Sage for needing help understanding!
No. 419622
>>419603I don't think the family is in on it consciously. Jaquie's had her mom wrapped around her little finger since she was a kid. In one of the vlogs her mom told a story of when Jaquie was little and they went to see a dr who said her leg pains were just growing pains. Jaquie was not impressed, threw a tantrum and walked out. Her mom was acting like it was commendable behavior. Her dad obviously spoils and coddles her. She's been 'sick' for as long as Judd's known her. His best friend's wife acts exactly the same way. And no doctors are straight up saying Jaquie's full of shit.
Did anyone catch that Jaquie was the one doing the paperwork at the bed store while Judd lay around on the mattresses? Daddy's money paid for sure.
No. 419635
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>>419566well she has also filthy finger nails so she probably doesnt care
No. 419652
>>419622This theory is more believable to me. It's kind of what I've always thought: maybe Judd has an inkling something isn't right, maybe he knows that Jaquie exaggerates things. But he looks the other way, I think mainly because he is in it too deep by now, and maybe also because she is now bringing in money.
Being here, we are sort of trained in suspicion. But when you're not, and IRL, it is
VERY hard to explore those feelings of "it doesn't always make sense what she is telling me about her symptoms" of someone you love. The thought that someone would lie about something like that, is unimaginable to most. Also, if Judd or Jaquies mom were to give into that feeling and actually explore it, they also will have to deal with the idea that somehow, they never saw this before. To most people, that is something their mind just cannot fathom.
So they go along. Any inconsistencies are thought of as her autism, misunderstandings or simply Jaquie being Jaquie. They console themselves with the thought that if she was lying, certainly her doctors wouldn't have given her a port or a feeding tube and all those other expensive and special treatments.
And while it is true that
some doctors have told Jaquie she wasn't sick, she has also found some doctors she is seeing long-term and who go along with anyting she says. Those doctors are of course hand-picked by Jaquie, but when you are actually in that situation, it is hard to imagine that
multiple doctors would go along with her if she wasn't actually very very sick. Plus, she has some very rare and unknown disorders, so they can simply tell themselves that the doctors who told her she wasn't sick or who told her it was in her head, simply didn't know enough about her particular flavor of sick.
Of course, when you look at it from a distance like we do and look at her history and e.g. how she got her saline infusions it all looks very different. You see that she simply saw something she wanted, and she set out to get it. She was on a mission to get a new toy, but Judd and her parents probably saw it as her advocating for herself and for the best treatment. After all, daddy's little princess deserves only the best of the best, doesn't she?
No. 419658
>>419653>>And gross, that’s going on an open hole to the inside of body. Is she trying to get an infection??Yeah, but isn't she going to wash them?
Also: Jaquie does NOT, I repeat, does NOT have MBS. I have never seen her brain leak, and until she shows it on video I won't believe she has it.
I on the other had, can just show you my leaking brain whenever you want to,
I have REAL MBS.
#ActualMBSPatient #FightingTheGoodFight #NotAshamedAnymore
No. 419660
>>419659Plus, I don't think it's something she/they set out to do. Jaquie just kind of fell into it when she started an Instagram for Harlow and it got to be so popular. After that, symptoms increased, she got her own account, she started to pursue other diagnoses, she started vlogging, and then it
really went down.
No. 419661
>>419658Oh, I thought it was a clean one. My bad. Still, a pink tiara one is more than a bit ridiculous for an adult.
And I’m so sorry, she tricked me. I thought her leakage was real. Why else would she need Harlow to inspect for that leakage. I honestly thought she had real MBS. How dare I invalidate your super rare disorder!! Don’t worry, you are now fully entitled to throw the queen of bitch fits about ableism while eating your cake.
No. 419680
>>419652" Plus, she has some very rare and unknown disorders, so they can simply tell themselves that the doctors who told her she wasn't sick or who told her it was in her head, simply didn't know enough about her particular flavor of sick."
Mayo Clinic, rated #1 in the US by USA NEWS, the benchmark magazine for hospital ratings, ia not familiar with her rare disorders but her local docs are–because they see so many of these cases?!!!!!
No. 419690
>>419371That's the one! I basically watched all of this unfold in real time because it happened in my town and I'm kind of a missing person/crime junkie. The daughter is probably never going to be able to function normally outside of an institution. She'll be out of jail when she's in her 30's. That's kinda scary!
saged for off-topic
No. 419834
>>419831I assumed they met through Jaq and Janeice– that they were sick and met through instagram or something then introduced their husbands.
How can Paul and Jud not think it's absolutely insane that they both happened to end up with girlfriends with the same "rare" illnesses? If my oldest friend and I ended up with SOs with the same illnesses, I'd think for sure at least one of us was in a shitty, lying situation.
No. 419851
>>419839Now I got curious about her video, and I'm stuck at the part where she is telling us that she won't go vegan because Paul can't eat vegetables because of his Crohn but it's hard to explain why. (her words, not mine).
I find her vlogs very hard to get through and they are too long as well. Can you maybe give my molten brain a little help and point me to a time stamp?
(And yeah, Janiece IS quite suggestible and just not very smart in general. She doesn't seem to understand half of her medical problems. On the other hand, in certain areas she has more common sense than Jaquie (such as the blazer thing when they went to that service dog thing at the university) and also, in a way she is less attention whoring probably because she just can't get away with it. I don't see Janiece get herself IV fluids, for example. She won't be able to pull it off. On the other hand, 'wheelchair because of muh gallbladder' is one of the most munchie things ever. I don't know, I can't quite put my finger on it/her. Even less so on Paul, tbh.)
No. 419858
>>419680To be honest, Mayo couldn't figure out and diagnose my rare disease despite my having "hallmark" symptoms of it. It was finally diagnosed thanks to a local non-specialist doc with follow up genetic testing at a major US hospital. But I do not believe Jac has some super rare de novo mutation that docs have never seen. My disease causes a different version of a gene mutation for every family that has it. It's not that special to have a new "mutation" in certain diseases. And there can definitely be mutations that are silent and are asymptomatic in many genetic diseases, but I'm sure someone here is more of an expert than I.>>419578
Sage for some blogging and playing doctor
No. 419866
>>419860Judd, I don't know. He seems like a pretty simple guy to me. Wants to work hard, serve his country, come home and have a nice dinner. Loyalty is one of his main drives. His role is to be the person who takes care of Jaquie and in his mind that means that it is not his place to question her. If his wife says she is sick and if a doctor says she needs X, Y or Z (no matter which doctor says it and no matter how many doctors were before him who said something else) then his wife needs it and that's the end of it.
Paul; I've always thought of him as a pretty down-to-earth guy. The most sensible and capable of independent thought of the four of them. I would've picked him as the first of them to call his wife or her friend out when she's going too far. But now he's talking along with Janiece about her custom wheelchair and saying how she should get power assist, and he was even more enthusiastic about their Patreon than Janiece herself was.
The wheelchair I can get to certian a point; he said so much that he always has to push Janiece and she is not the lightest as well. Plus, I get that a guy wants to walk beside his wife for a change instead of behind her. But I'd have thought him to be the one to tell Janiece in a kind but firm way to try to slowly increase her walking distance, or to really try PT before even thinking of a wheelchair. Just like he made her stick to her FODMAP diet (although that only lasted about three days, but still). But he doesn't do that. He just lets her go on and in a way is even egging her on. I don't know what to think of him anymore.
But nowadays? With the launching of the Patreon page he was acting like a little kid. Much more so than Janiece even, which is saying a lot. I really don't know what to think of him anymore.
No. 419885
File: 1510271675684.png (69.73 KB, 224x214, lgV7s87.png)
Holy shit her lips are gross. Hasn't she ever heard of lip balm? Given her use of iv saline she can't be that severely dehydrated. And combined with her face swelling (her face looked MUCH slimmer not that long ago) I'd say she's definitely purging. If it was just vomiting from her GP she'd definitely be telling us all about it, but she hasn't mentioned vomiting for a while.
No. 419891
>>419875Thanks. Well, Janiece doesn't know how to use a lot of words. She says it is because of the hearing problems she had as a child and the fact that they pulled her out of speech therapy too soon. Now I have to say that I do not have any experience with this, but to me as a lay person it doesn't sound like like the kind of trouble a person who is hard of hearing would have. More like someone who has a limited vocabulary, probably related to the enviroment they grew up in and the fact that they are not reading very much. But like I said: it's not my area of expertise.
(I mean, my English isn't perfect I'm sure, but it's not my first language.)
And yeah, both Jaquie and Janiece seem to have only friends from the inner circle of spoonies with service dogs. It's weird. I'm not suprised if someone with a disability has more disabled friends than the average able bodied person because we simply do some things seperate (e.g. sports, some group holidays, sometimes even school) and sometimes you make a few new friends when you go to a support group or whatever, but ONLY having disabled friends (who are all at pretty much the same 'level of disability' and probably even see the same doctors and have similar conditions) is just kind a creepy.
No. 419893
File: 1510272046372.png (419.31 KB, 818x539, wDoIdSO.png)
Just in case you guys thought Jaq had no issues in the pooping department, she apparently can't poop without a stool (kek) to rest her feet on. Because pooping like a normal person is just too…… normal. Obviously.
No. 419903
File: 1510272424365.png (734.81 KB, 815x688, i47ObXU.png)
She seriously is a fucking idiot. She has JUST been talking about how incredibly painful and unstable her hips and knees are "due to my EDS", yet here she is proudly displaying her courageous and inspiring house work efforts, sitting on the floor yet again, in the most painful position you can sit in if you ACTUALLY have hip and knee pain.
No. 419909
File: 1510272613335.png (382.05 KB, 356x692, D3w0IA5.png)
Oh and guys, don't forget, her shoulders are so sore and unstable that she can't lift her arms above her head (holding the camera up above face level for minutes at a time throughout the day, every day, doesn't count though k)
No. 419923
>>419912Foods to avoid if you have chrons bc they may
trigger your symptoms:
alcohol (mixed drinks, beer, wine)
butter, mayonnaise, margarine, oils
carbonated beverages
coffee, tea, chocolate
corn husks
dairy products (if lactose intolerant)
fatty foods (fried foods)
foods high in fiber
gas-producing foods (lentils, beans, legumes, cabbage, broccoli, onions)
nuts and seeds (peanut butter, other nut butters)
raw fruits
raw vegetables
red meat and pork
spicy foods
whole grains and bran
https://www.webmd.com/ibd-crohns-disease/crohns-disease/creating-a-crohns-disease-diet-plan#2 No. 419934
>>419885If her lips are like that from compulsive picking- she might have some severe anxiety issues going on at the least.
Why does Jaquie never talk about anxiety and depression anyway? They go hand in hand with chronic illness. If she doesn't admit to those, there's no way she's going to admit to an eating disorder.
No. 419954
>>419950I don't get why she can be so dehydrated though. They've got AC, but still if you're drinking enough (or, in her case: pushing fluids through your port) just dry air wouldn't make it
that dry, wouldn't it? And the rest of her skin doesn't look so dry, too.
People say a lot that lips get dry from purging/vomiting, but to be honest I can't remember I had that problem when I was vomiting a lot. Though it could also be that I had other things on my mind and just didn't notice it. But what's the mechanism behind dry lips from purging?
No. 420010
>>419996Yeah I know it's actually a good way to poop. But when Jaq was talking about it she made it sound very OTT, said she can literally not poop AT ALL without that. Like it's her weird anatomy. She's too special to just poop like the rest of us.
But let's face it she's probably just constipated because all she eats is ice cream and fried chicken.
No. 420183
>>420089Maybe her eating disordered ass thinks she can burn a little bit of extra calories by moving as much as she possibly can while talking? (I don't know. I tend to talk with my hands, but it's NOTHING compared to her.)
>>420051Kek. I do find it very strange though that they both have such similar symptoms. They both have narcolepsy, POTS, noise sensitivity and GI problems. I think Janiece loves food to much to be able to munchie herself into a GP diagnosis or a tube, but it is odd that she never mentioned any gut problems until she suddenly was in a wheelchair because of 'muh gastritis', then 'muh galbladder' and now 'muh POTS and narcolepsy'. But they both have a service dog from the same breeder and now that Jaquie has her 'custom wheelchair' Janiece wants one too (and I'm pretty sure she'll try to get power assist, as well). Plus, Janiece is seeing a narcolepsy doctor that Jaquie suggested to her, and I wouldn't be suprised if they see the same POTS doctor, too. It's all really creepy
(O, and a friendly suggestion: 'sage' goes in the email field. Then your post will be saged.)
No. 420186
>>420010O, it is a good way to
poop. Just not a good way to
vlog. Plus, why isn't a stool just as good? I know someone who has something like that squatty potty in her bathroom. It makes it
really difficult to get onto her toilet from my wheelchair. Just sayin'. I know Jaquie doesn't need her chair indoors (although we have seen 'practice' with it inside) but even for someone with balance problems or general weakness I think I'd be quite difficult to get yourself on a toilet with that thing in front of it. Even when they have handrails. (Of course we know Jaquie doesn't need that: she just showed us with that cleaning video how her joints and her muscle control is just fine. Must be great being able to reach that high and that low.. I'm sure it makes life a whole lot easier!)
No. 420275
>>420271I'm guessing it will also depend on insurance? I'm not really familiar with the US system, but I think it can vary a lot how easy it is to get certain stuff covered?
But you are right, it would be VERY hard for Janiece to get power assist. I don't think she'll be able to. Not only does she not even have a fake condition that would warrant it (if Jaquie actually had EDS, I could understand it - although she has never complained about her shoulders or wrists before) but she is also less persuasive. She just isn't as good at the munchie game as Jaquie is. I mean, if she gets power assist covered because she is tired a lot from her narcolepsy, my brain will
actually melt.
Plus, I don't think Janiece
ever leaves the house without Paul. Or a friend, as we've seen yesterday. Jaquie at least
used to drive short distances, but I'm not even sure if Janiece has a license. And if her narcolepsy is half as bad as she tells us it is, that's actually a good thing.
No. 420278
>>420275To get it covered by insurance it still has to be prescribed I think (UK here!) as in, medically recommended and documented. I know there are some idiot doctors (i.e. why so many people have stomas and ports unnecessarily!) but there is no need for Janiece to be in any kind of wheelchair at all, let alone an electric one.
As for Jacquie, she clearly isn't hypermobile in an unstable way. I would guess that in a beighton score she can touch the floor with both hands (given her martial arts background) and I think some thumb to wrist? So, say a score of 3?? She doesn't have recurrent history of dislocations. The most common dislocation are shoulder and she clearly has full movement of them given her cleaning, lack of complaining and self-propelling (with or with out power-assist) and twisting. She also has no issue permanently wearing a backpack that weighs over 1kg (1 litre of saline = 1 kg, plus the actual backpack, 2 pumps and her feed bag). This backpack doesn't have a chest or hip strap so her shoulders are stable enough to stay in place and not be pulled back by the weight of the bag.
Ahhh it is all just sch a load of shit and I hope at somepoint they all just get sectioned.
No. 420285
>>420278Nope, she couldn't touch the floor with her hands. She said somewhere that she thought it was wrong that Beighton also scored points for something that utilizes muscle flexibility and not joint flexibility, and that her muscles were very tight. She also said that her neuro scored her 8/9 and the geneticist scored her much lower (would have to look it up, I think it was either 2/9 or 4/9).
So yeah, she probably has some hypermobile joints.
Maybe her nek and/or hip pain is even related to that hypermobility. But that's all. As we have seen before, she herself said she never had a dislocation or subluxation, until she suddenly started to complain about a clicking sensation in her hips. My theory is that she either doesn't have that at all, or she simply has a snapping hip. I do not believe for one moment that her hips are actually subluxing. It's very hard to sublux a hip, even if you really have EDS. Most people with EDS will never sublux a hip, even if they have multiple daily subluxations of other joints.
Plus, she
never tells us about her so called subluxations or how they happened, how she put them back in place, etc. She only tells us that her hip subluxed a while ago/a few days back but if you then go back she didn't even mention it on the day it supposedly subluxed.
And as you say, of all joints the shoulder is the most prone to dislocation even if you aren't hypermobile. She has never even had a subluxation of a shoulder, and she used to do martial arts. She just tells us that pushing her chair without power assist "makes it
feel like it's going to sublux". That in itself is very weird: she never had a sublux or dislocation of her shoulder, but she knows how it feels if they are
going to sublux? I don't even understand what she means by that.
But basically, unless she has DDH, it is
HIGHLY unlikely that someone who has never had a shoulder sublux or dislocate would sublux a hip. Pair that with the fact that she never tells us about a sublux at the time it actually happens, and I am 100% sure she doesn't know what she is talking about. I do however think that there is a small chance that she actually
thinks she has subluxations, especially if she indeed has a snapping hip. I've seen many people confuse clicks and snaps or joints or snapping of tendons with subluxations.
No. 420290
>>420285It is some new level of dumb if you think joints clicking is subluxation/ dislocation!!! I just thought she was flat out lying!
I was born with my hips displaced (i'm not sure if that means sublux or dislocation) as was basically everyone in my family but obviously newborns aren't exactly muscular! Despite that none of us have dislocated our hips (though back in the 1950s my my was in an ankle to chest cast for 18 months because they didn't understand hip dysplasia needed physio not imobilising).
No. 420299
>>420290Hips displaced would either mean DDH (hip socket did not fully develop) OR dislocation, depending on how severe it is. Congenital hip dislocation is always DDH, but DDH is not always dislocation. See e.g.
http://orthoinfo.aaos.org/topic.cfm?topic=a00347 for more information. You'll also find there that DDH doesn't need immobilising, but it
does need - in most cases - a positioning device to help the hip develop correctly.
That's wildly off-topic, so back on topic:
Sometimes it
can be difficult to distinguish a mild sublux from a snapping tendon. Not normal clicking, that's just stupid to think that is a sublux. But when a tendon or ligament snaps, it can hurt and it can even need some wiggling to let it 'snap' back in the right position. With a snapping hip it snaps with a certain movement and it can be painful. Especially if someone has
no idea what a subluxation feels like, I could imagine that someone would think that to be one. I have to say however if she actually
has a snapping hip it is VERY mild, because she thinks she has subluxations once every few weeks and most of the time with a snapping hip the tendon will snap with every single step.
So it's still very probably she is flat out lying. Or that she has some other symptom of increase in pain which she thinks is a sublux. I don't know. She never tells us what happens when she thinks she had a sublux, so it's hard to tell.
No. 420407
>>420388Hang on, I thought she
never slept well? Between the narcolepsy, pain and her feeding pump alarm going off
multiple times every night, it's odd that she would call that "good". "Fine" or "OK" I could understand as it'd be the norm, but "good"?
Regarding her new bed: while I do not think there is anything wrong with buying an adjustable bed (especially if you have chronic pain, mobility problems and/or are in bed a lot) I don't understand why she is so over the top happy about it. O, Wait, I do: it's a toy to her.
Plus, did I understand it correctly and do Judd and Jaquie both have the same mattress? That doesn't make any sense. There is a significant weight difference alone, and there are few things where personal preference can vary so widely as with mattresses. And if you are in pain, you
have to be critical. I'd be a HUGE coincidence if you and your partner would pick the very same mattress as most comfortable. Even if they both had the same type of mattress, you'd expect Judd's to have some extra stabilisation and/or be a little more firm, simply because he is heavier.
But of course, we have seen that when they went to look for a new mattress, Judd was more critical of them than Jaquie was.
He actually tried them out and made sure he got a mattress that was comfy for his back pain, while Jaquie was more interested in playing with the remote of one of the adjustable matresses.
No. 420635
>>419885Honesty, to my shame, my lips look exactly like Jacquie's (and I live in Orlando, and can attest that dry air is not the culprit–Florida as a whole is a very humid state). It could very well be from compulsive skin picking. I have a terrible and gross habit/compulsion of peeling the skin off my lips. I do it many times a day, every day, often to the point of bleeding. I use chapstick and lip balm, but it doesn't help. So I think it could be her problem.
On a side note, I can't even remember the last time I saw a service dog. It is definitely not a thing here in central Florida. Jacquie and Harlow would definitely stand out–but I guess that's the point.
No. 420701
File: 1510377419276.png (259.96 KB, 1536x2048, 6EE121C3-7696-4E59-9A67-DA8B81…)
Jaquie’s little friend is absolutely disgusting. She and jaquie are on the same attention-whore level.
No. 420755
>>420430She naps all day in the recliner part of the couch so the nausea might be if she actually is orally eating 30% of her daily caloric needs. More likely she is uncomfortable from vomiting the 30% into the toilet while sitting on the SP stool. You know that J isn't the brightest crayon in the box (dumb) so she is just trying to qualify the medical need for the expensive bed. Predicting she will be squealing over the bed for a few days then back to seeking Ketamine for joints & bones that magically un-sublux themselves. For sure her next vlog will find her in the Barbie car, vog mask, gloves, kiddie backpack full of pumps/solutions and a truckload of her medical supplies because thay are going to see Judd's fam and she will have an audience. Betting she will have to push some Zofran out in public and ride in the pink cruiser to show how handicapped she is.
>>420388She slept well because she was dreaming about the new amusement ride bed coming! Or maybe she pushed a little Toradol thru her port at bedtime. She probably couldn't get to the walker anyway since the ten year old mattress was congesting the hall, not that she didn't need it. She never would have missed a chance to use a toy.
>>420424Yes, her Poor Little Jaquie Patrons are redecorating the bedroom. Soon the Amazon boxes will be arriving to the rental office–but fans, don't send mail because y'all send germy mail but Amazon and UPS sterilize their packages! Stupididiot!
No. 420811
>>420701Wow. Was there, by any chance, an accompanying picture showing off her bones?
I don't understand how these women don't see what they are doing. It's so fucking obvious that they are SO proud of how skinny they are. Many of them share pictures of their way too skinny body (and are also holding in their stomach, picturing themselves from an angle that makes them look even skinnier and/or photoshopping the pic for good measure) and then say how they felt self-aware first, but decided not to be ashamed, blahblah. Like that Aubrey chick is doing. I mean, if you think Jaquie is giving off strong ED vibes, look up Aubrey and prepare yourselves!
All the while, their picture, post and whole demeanor are screaming: "look at me, look how skinny I am. I am skinny AND sick, do you see it??" It's disgusting. And what I hate maybe most about that, is that they do have a (tiny) point: people often DO think it is OK to point out how 'skinny' you are and make jokes about it and say things that wouldn't be PC if it was an obese person they were talking about. But they negate that whole point by their attention whoring about how skinny they are. Because while it may be true that people sometimes ask you "how you maintain your weight" if you are at the low end of a healthy weight or even slightly underweight, NO ONE will say that to you if you have a BMI of 13 and are actually SICK. People just aren't that stupid.
No. 420817
>>420811I can't post a screenshot right now, but she has a pic showing off her tube, wearing a jaq shirt, and her ribs are sticking out a little. But no more than is normal really. even if you're overweight the bottom of your ribs will stick out if you're lying down, puffing your chest out and lacking upper abdominal muscle tone.
And she ends her caption with "ignore my protruding ribs" for fuck sake.
No. 420862
>>420858The first comment is "OMG I subbed to her OMG" and it has over 400 likes. And there are more comments like it.
For some reason Jaquie has some kind of magnetism. A LOT of people call her 'cute', not there, but also in her own comments. They point out her mannerisms and say "I love it when you do that" or simply use a heart-emoticon. I'm not quite sure
what, but there is something to her that a lot of people find attractive. I think it has to do with the fact that she presents herself as a girl and not as a women, and when she takes care of herself she is actually quite pretty as well.
No. 420875
>>420854She seemed WAY more normal in that video. She spoke more fluently, had her eyes fully open and didn't use strange hand gestures.
I totally get that if you have an illness you can be really sick but for those 30 minutes or whatever you can seem well. Or indeed for many, for that 8 hour shift they hide it with some minor adaptations. However her speech was just so much more fluent!
No. 420884
>>419828>>419835Absolutely.
Add to that the fact that both women got their "chronic illnesses" only after meeting their husbands, and I am convinced they are all just conning people for views any money.
Malingerers whose husbands are an active part of the ruse, not munchies.
No. 420888
>>420884Jaquie seems to crave medical attention though and gets a bit euphoric about things. I'm pretty sure Jaquie is a munchie. I'm no professional though so what do I know. But she seems to be a malingerer as well because she malingers until she gets the toys she wants, and she loves it too.
Why else would someone want to be put under for an ingrown toenail? I only have one chronic illness and would avoid GA at all cost- you can have lasting effects from it and it's risky. Why would you opt for that unless you just loved it in a very extreme and mentally disordered way? Also who has a toe that doesn't heal for over a year? Someone who's keeping the wound open sounds like a good answer.
No. 420904
>>420888>> Also who has a toe that doesn't heal for over a year? Someone who's keeping the wound open sounds like a good answer.That thought had occurred to me, too. But then I thought, if she did that to 'prove' that she has slow healing from EDS, I don't understand why she hasn't milked it more. She just mentioned it this week, and apparently it has been going on for over a year. Unless she's just straight up lying about it. Or HUGELY exaggerating, which I think is a possibility. Note that all she showed us was a band aid over her toe, and Jaquie is never shy to show "everything, the good and the bad" to 'the people'. I have a toenail that wants to grow in so I often have to peel it out of my skin to prevent it from
actually growing in. Sometimes it hurts. I never considered it a problem, but I could of course call it an ingrown nail that
never fully heals..
>>420884Hm.. no, I don't think so. I think Janiece developed the same problems partly because she is super suggestible. Plus she didn't seem to be doing anything with her life and she already had some problems (her ears and the balance problems that stem from it - which I for one believe to be real) so I think it was an easy out for her. Pauls family didn't 'believe' in invisible illnesses, so she developed more of them to convince them and maybe even herself that she truly was sick. Jaquie egged her on and gave her advice, probably because Jaquie likes the thought of having a friend whos life is a bit like her. (It's difficult to maintain friendships if you are sick and your life seems to be on hold while everyone else is growing into adulthood.) And who knows, maybe she actually believes some of her own problems. I do think that Janieces problems are more psychosomatic compared to Jaquie who is more FD (however they both seem to have a mix of those two and more going on). Janiece thinks Jaquie knows everything when it comes to illness and how to talk to doctors, and Jaquie even gave her advice on which doctors to go to. We all know the doctors Jaquie sees are a
little different from the average (rather:
normal) doctor. So of course they diagnosed Janiece with anything they could think of.
But when you look at how Jaquie started out, I do not believe her internet fame was premeditated. I absolutely think that right now she is very much aware of the effect her actions have on her online popularity, but I think she pretty much fell into it. Remember that Jaquie already was happily munchie-ing away when Judd was overseas. For example, her appointment at Mayo was planned before Judd came home. He also doesn't seem to be too involved in both her medical 'journey' and her vlogging in general. True, sometimes he takes the camera himself, but in most vlogs all we see of him is Jaquie and him sitting on the couch together or lying in bed before they go to sleep.
Janiece's vlogging habits on the other hand.. I DO absolutely think that a large part of her chronic illness vlogging AND her Patreon account are her copying Jaquie. She saw how popular Jaquie had become, how Jaquies Patreon was 'contributing to the financial stability of her and her family' (or however she phrases it) and she wanted a piece of it. Her videos have changed from informational videos about feeding dogs raw to over 90% chronic illness vlogging. Even Paul's illness and injury are vlogged about (he had an ankle injury a while ago, which they milked quite thorougly). And when she developed/played up/exaggerated GI symptoms, she immediately incorporated that in her vlogs about 'chronic illness'. (No Janiece, not every new health problem is a chronic illness, and by definition a new problem cannot be chronic unless it is diagnosed as a problem that is
known to be chronic.)
So while I do not know how much Janiece is aware of what is happening to her health-wise, I DO believe that she knows what she is doing with her channel. She knows from watching Jaquie what kind of videos get a lot of views and she thinks she can do that, too. She does not realize that the way she talks and the way she edits her vlogs make them
really hard to watch and although she does have a distinctive style which I think gave her her core audience (plus Jaquie, of course! Janiece would have nowhere the amount of views/subscribers if it wasn't for her affiliation with Jaquie) she just doesn't have the potential to reach a certain main-stream popularity that Jaquie magaged to obtain. I'm still not sure
what it is exactly that makes Jaquie so appealing to so many people, but whatever it is, Janiece just ain't got it.
No. 420914
>>420913>>I just cancelled my patron pledge to JaquieGood for you!
O, and welcome! (I assume you are relatively new here?) Are you willing to divulge more about what made you change your mind about her?
No. 420928
File: 1510410878819.png (379.98 KB, 750x1334, IMG_4731.PNG)
Here's Amanda morphing in to full Jaq mode.
No. 420930
>>420888>and gets a bit euphoric about things.Her droopy eyed mumbling to show how I'll she is is obviously fake, why would I believe that her euphoria is not fake too? She could just be copying other munchies "brave warrior, so positive" schtick, it's just more believable than her pretending to be sick because she doesn't know what it's like to be really sick, but she does know what it's like to be really happy.
>>420904>I DO believe that she [Janice] knows what she is doing with her channel. She knows from watching Jaquie what kind of videos get a lot of views and she thinks she can do thatThe same can be said about Jaquie copying Mary Frey. Even more so, it's so obvious she's doing that.
No. 420939
>>420930>>The same can be said about Jaquie copying Mary Frey. True. But like I said: I think she knows how to get views and knows what type of reaction she'll get from a certain video. I just don't think it started out like that. Her channel maybe, or in any case her vlogging, but not her illnesses.
>>420931Me too! I'm always excited when people call her out, as well. Jaquie and people like her are doing a lot of damage, both to young impressionable girls who aspire to be like her, to the chronic illness/disability community in general and a lot, lot more. So I'm glad, anon
>>420922 that you realized what was happening. And I am sorry that you got scammed, because when it comes to her Patreon, I think that is what it is. I just hope you didn't loose too much money.
People giving her money is a bad thing all around: not only are they being scammed, but it also fuels her madness. And, indirectly, that of a lot of other - especially young - people. Whether is is people with genuine health problems that get sucked in the competitiveness that is the spoonie community, or because they genuinely believe that a wheelchair is a good idea when you have POTS. Or people with psychogenic problems who are kept from actual treatment that could greatly benefit them because they are told to doctor shop until they find a doctor who will diagnose a physical problem, or people with poor mental health who somehow find it easier when the world around them views them as sick physically; it is doing favors to no one.
And don't even get me started about what it is doing to society in general in not only wasting recourses but also the whole "warrior"-thing which I find to be really disgusting, AND how she is painting such a bad, bad picture of what it is to be disabled or chronically ill.
No. 420943
File: 1510412400466.png (1.61 MB, 1334x750, IMG_4732.PNG)
So today Judd's truck is too loud for her and she must wear headphones… though finally she has less noticeable pair that actually have noise canceling while allowing you to hear conversation. But is she just going full munchie bc of the trip to see judds family? Or have 'y'all' ever seen her do this in his truck before?
No. 420951
>>420945I do understand that everyone is different, but I am quite sensitive to sounds myself (not a disorder though, just very sensitive) and I find human voices (as in: crowds) so much harder to deal with than continuous machine-like sounds. That's because with voices, the noise often goes from high to low pitch and everything in between. And there are a lot of sudden outbursts where the noise increases without prior warning. It's a far more um.. 'chaotic' sound, for lack of a better word.
But yeah, my guess is them going to see the in-laws is a big factor. I'll have to watch the vlog now. Was wondering:
have we ever seen Judd's family before?
No. 420969
She
finally made an appointment with the surgeon, she had been putting it off (after two days, kek).
I can't really tell if she is only acting as if she doesn't really want to have two tubes, or if she actually
is apprehensive about the whole thing. (And if so, why exactly.) Also, can anyone weigh in on the whole kinky tube situation? I know from the website that her button has anti-kink technology, so it seems a bit weird to me.
GI-fag anon (or anyone else who knows their feeding tube placements), are you there?
She explains in this vlog
https://www.youtube.com/watch?v=JCPah_0dF98 from the 4.50 mark that her doctor told her the tube would definitely kink again because her stoma is basically placed on/in the lesser curvature of the stomach (and could not be placed elsewhere) so the J-extension doesn't go straight into the intestine.
Does that make sense at all?
She is also commenting that the mattresses are a bit stiff. Maybe you should've tried it out first, Jaquie? Sleeping inclined helped with her heartburn - but she slept inclined as well before, just with pillows.
>>420956Yeah, but what should she do about that? Either the dog can't come (and as I assume they buy into Jaquies narrative, that is simply not possible) or she is running over the floor. I'm not sure how that could be helped, to be honest. Though I do not understand why she let Harlow walk around while people where carrying heavy and bulky stuff
on the stairs even, that was very irresponsible.
No. 420984
>>420978She says it is because of her weird anatomy and because she is tiny (I'd presume most patients who have one placed are, but still) her doctor had little room to work with.
I'm not sure if that makes any sense (hence my questions) but I do get the distinct impression that her doctor does not have any experience placing this specific tube (and probably doesn't have much experience with GP as well).
No. 420992
>>420984Her tube is placed where most GJ tubes are, and she’s not tiny compared to all the infants and small children who have the exact same tube. And she’s not tiny for an adult, either. She’s not fat, but she’s definitely at a healthy weight. I don’t think her tube was ever kinked, she didn’t have the severe symptoms that would cause, and also no ER would leave a kinked tube in e patient for days. A hospital can’t put in a new GJ button immediately, as those have to be ordered to fit the patient, but they always have the normal GJ tubes in stock and can switch it real quick. And no one could have a GJ tube where the j tube goes straight into the small intestine, that’s not anatomically possible for anyone. Not to mention that many eds patients are dissuaded from getting two tubes due to problems of putting another hole in your body that has to heal and has the possibility of tearing or getting infected. Although that’s not an issue as she doesn’t have eds, it’s still not something she needs (lets be honest, she doesn’t need a tube at all). But more surgeries and more holes in her body means more attention and asspats.
No. 420995
>>420984-she’s not that tiny (just look at her!). Plus, they put those in babies that weigh as little as 10-15 pounds. The same tube, too.
-her doctor is a moron. It’s super obvious she’s eating quite a bit, as it’s physically impossible to even maintain weight on the amount she tube feeds.
No. 421032
>>421026I'm sure she would've always have gone to see the surgeon. She just said the things today to bring it up again, encourage posts like 'I know surgery is scary but you gotta do this' and cement the idea of 'I don't want these treatments but my doctor says I need to' kinda idea.
It is 100% attention and in this case I don't think Mary Frey's hospitalisation is changing the tragectory for this.
HOWEVER I do expect than Sunday- Tuesday there will be lots of fatigue/ 'episodes'/ pain 'due to the trip' and further feeding tube issues potentially leading to the ER.
No. 421042
>>421026She's getting 2 tubes because with Waquie Jaquie every medical issue has to be extreme & over the top. She loves to get the Ketamine anesthetic, she loves being in the hospital, she loves the drama of suffering and filming it in the recovery phase. She might even work in an anaphlaxis episode. For sure she will need pain meds, will have to reduce her feeding rate, nausea meds, won't be able to eat orally and will be riding the 10 steps to the hospital bathroom in the Barbie car. Her 'new bed bliss' wore off fast and now she has to dream up new material for her vlogs. She didn't even pause to think about having more holes in her body–she immediately called to make the appt with the surgeon–the same one who put her present buh-in in the wrong place, according to her.
A round of applause to the Anon who pulled the patreon plug–she uses that money for her personal shopping, not to improve her YT site.
No. 421093
>>421080Dogs need walked at least once a day, and high energy breeds and young dogs ideally need walked twice a day. Poor Harlow never gets walked. And then Jaquie - who is supposed to know so much about dogs - wonders why it's running around the apartment non stop. Because you a have a very young dog, who is bred is to work and task and it's running/excerise space is maybe 400sq feet. Yes their entire apt is bigger but the dining room/living room combo can't be much bigger than that.
Now that she has her precious Barbie Car, why isn't she using that to take Harlow on at least short walks? Even if it's part of training at least the poor dog would get outside and get some exercise.
No. 421137
>>421111I don’t think it’s entirely that she’s an idiot, I think part of it too is that she just doesn’t care. The most important thing in jaquie’s life is jaquie, and anyone else is pushed aside. She is the center of her own world, to the point she lacks empathy for other people and animals, including Harlow. She doesn’t care to put out any extra effort, because there’s no direct benefit to her. She has to keep Harlow alive, because Harlow adds to her legitimacy, and gets her attention, but other than that, it seems like she doesn’t give a shit. It’s pretty sad, but not surprising given her sociopathic tendencies.
No. 421282
>>421272In her segment on The Doctors she even said it was 30 minutes!!
If we're talking about fainting from POTS (or in Jaq's fancy words, "syncope due to my autonomic dysfunction disorder") you don't faint until your heart rate gets too high. Mostly because it gets too high too fast, like upon standing up. But it can also happen from cardio exercise, like just doing anything that gets your HR up. It can just happen sometimes, but usually there's a physical cause like exertion.
And unless it happens really suddenly (like upon standing) you will feel your HR is too high before it gets so high you pass out. You will have plenty of time to lie down and help it before you actually pass out. Think about how hard and fast your heart beat was last time you ran a long way for example. It's very physically obvious. A dog could probably hear it, if they were close by and paying attention. But at that point you don't need the damn dog to tell you about it because you'll feel it.
And obviously, if it happens suddenly, like with standing up, (this also usually goes along with a blood pressure drop but not for everyone) your dog obviously won't be able to warn you 30 minutes, 15 minutes, or even 1 minute before you stand up and cause it because your HR will be normal leading up to that.
I'm not a doctor, but I do have POTs, and that's about the extent that I can answer your question I hope it helps. Also even when my POTS was at it's worst and totally unmediated, I only almost passed out a couple of times, but I had many times where I couldn't sit upright without extreme dizziness. It was really nothing like how Jaq describes it, but that's just me. Sorry for blogging, felt relevant though.
No. 421319
>>421282I also have POTS diagnosed for over 13 years and you can ALWAYS tell on your own when you will pass out! You don't need a dog for that. Plus Jacque sits up way too much for someone with 'sooper severe pots' when mine is that bad I have to lay down FLAT.
Sorry for blogging
No. 421326
>>421282I have seen a lot of people say that Jaque doesn’t need an alert for POTS because you’ll “feel it” if you’re about to faint from POTS. I definitely think this is true for some people and certainly 100% true when referring to fainting solely from heart rate elevation.
BUT here’s the thing - my understanding, based on what my cardiologist has told me is that fainting from POTS incurs 2 mechanisms - both heart rate AND blood pressure. So in order to faint from POTS, in the traditional sense, you must change position, which results in a rise of hearty rare higher than 30bpm while simultaneously your blood pressure lowers to your fainting threshold (which really varies from person-to-person but low BP is considered anything below 90/60)
Now, I’m one of the lucky people that has both IST (random Tachycardia so my heart rate sometimes goes super fast without a change in position) positional Tachycardia, (my heart rate always goes fast when I change positions) and POTS. Because 9/10 my “feeling” of high heart rate is just that - high heart rate - I usually ignore it. So the off times that my blood pressure drops, I don’t really know the difference until I start to faint.
Now I have a little dog, not a service dog, just a little dog, who has picked up to these episodes. So when my heart rate goes up (which multiple times a day) I’m fine, but the couple of times a week that the perfect storm happens and blood pressure drops, he alerts and lets me get to the ground quickly. Of course this is my personal experience and I recognize everybody else probably has a different one I will say that my not trained dog has definitely kept me safe quite a few times.
I still fall jaquie’s BS tho, because she has never mentioned BP which is the deciding factor in whether or not you faint and a 15 minute alert is impossible because the changes are postural. My dog can only alert me about maybe 1-2 minutes before I pass out. So I mostly just have to get to the floor immediately not go cuddle up in bed.
Anyways, that’s my two cents. I just wanted to explain how, in my experience at least, I can’t “feel” when I’m about to faint cause the sensation is about the same right up until I literally faint.
Sage for blogging
No. 421339
>>421326Thanks for the explanation, Anon. I have pots and IST as well. You don't need a dog to tell you when your heart rate is up. The latest blog when Jaquie showed us her heart rate was odd- she claimed her heart rate was 130 whilst sitting on the ground(hence super severe pots) but she had just had a phone call from a health professional which might have also make her heart rate spike- white coat syndrome or something- it's very common and I don't see why Jaquie would be exempt from that. And you wouldn't need a dog to tell you your heart rate was up for pots or IST because it's not typically in relation to any emotional stress or anxiety- we could almost directly link jaquie's 'pots' episode with a stressful phone call- she may have just been nervous. The reason I go to great detail explaining this is because heart rate spikes form anxiety tend to sneak up on you and you don't necessarily know how high your heart rate is when you're anxious( ask anybody who has ever felt anxious), whereas when your heart rate is high from a medical condition, you're very cognitively aware of it. I am so good at guessing my heart rate now that I can tell you with accuracy what my heart rate is just by how it feels through my chest.
As far as blood pressure is concerned, you're more likely to faint with pots if you have blood pressure involvement, which is what Jaquie claims. But she has had autonomic testing at mayo and her findings didn't meat the criteria for pots- they would have taken into consideration her blood pressure drop. I'm guessing her test showed nothing significant. I get it that you can have good days and a she could have just had a good day the day if her testing, but you have to be pretty unlucky for that to happen if you have "severe pots"- if you have severe pots even on a good day you would fail any sort of autonomic testing, which is why I don't discredit her Mayo tests.
Blogging for comparison here- but I don't faint with pots and ist in combination because I can feel when it's going to happen and can take measures to prevent it- you often have enough time to lean on something or sit down/ even if it's on the floor, take some deep breaths and wait for it to pass. You would have to be really irresponsible to just let the faint happen and risk serious injury. It's possible to just lose muscle tone and collapse as well, but that technically not a faint and in my experience those are very unpredictable and you can't really prevent that from happening, but that doesn't happen to everyone and I don't think it happens to Jaquie because she doesn't seem to have pots in the first place. Her accounts of it are really off the mark.
No. 421391
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Ok, this girls Jacqui obsession is getting more than creepy.
No. 421427
>>421408Well since she's probably figured out that "venting" her food blocks the tube….
Did she explain why they were going to give her a second tube? (At least I know that's the way she's presenting it, she probably started asking about it herself though)
No. 421482
>>421474If insurance isn't covering the formula she is using, then it is likely that she is not getting it from a medical supplier, but rather directly from the website. I wouldn't be surprised if Kate's Farms gave her some kind of discount since she has a semi-decent "following" and talks about how great it is - seems to have convinced others that they need this super special organic formula.
I don't watch her videos so I have no idea what she tells her doctor. He may not know how little formula she orders. Although I assume if she was telling him what a low rate she was running the feeds at that he would figure it out. Doctors only see patients very briefly and have to rely on the picture that the patient presents to them. We can see her eating a ton of crap but he may have no way to know that. She has definitely gained weight, but it doesn't look like she has gained so much that it would give away how much she is truly eating. If she claimed to be eating nothing and is now claiming to only tolerate a small amount of tube feeds you would still expect some weight gain.
That being said - she clearly has a lot more control over her doctors that she should.
No. 421486
>>421485I don't know enough about rates to know whats expected - my experience (working not as a patient) with feeding tubes is doctors who just signed off on whatever the dietician said (completely different reason for g-tubes). I just think that just because something is obvious to us doesn't mean its obvious to the doctor because they don't have as much information. Although clearly her doctor gives her whatever she wants.
I believe she does have a prescription for the formula. However, unlike most people, she has decided to stick with the particular formula instead of switching to one her insurance picks. If insurance is not going to pay for it, she can still purchase it out of pocket. If you go on to the Kate's Farm website you can buy it directly from them - no prescription needed. If she is buying it out of pocket then she may only be ordering what she needs.
I suspect that she pays out of pocket for many of the things that she says insurance "approved". It is very unusual how fast she got the wheelchair especially a custom one. Now clearly she has a doctor that she can get to write the documentation she needs to justify it. But getting a wheelchair, especially an expensive one with bells and whistles, is usually a longer process. I don't doubt she had a prescription for it - but that doesn't mean that she didn't pay for a lot of the extras herself. Wheelchair companies are still a business that wants to make money so if they have a customer willing to spend money on all the "extras" they aren't going to say no.
No. 421671
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Judds family looks less than thrilled to be part of the vlog fuckery. They never get to see him and the whole visit has been about Jaquie's "adventures". I wonder if anyone in the family asked him to think twice before
marrying her.
No. 421673
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They go bowling and she can't handle it even with headphones on so goes and sits in the truck but when it's about her - Disney - malls - restaurants she wants to be at - somehow she's unphased.
No. 421700
>>421695Supposedly she had a few dizzy and shaking spells so her doctor gave her a monitor to find out if she had low blood glucose when this happened. I don't know why though: if you think you have low blood sugar and you don't have diabetes you eat something. No need to medicalise that shit.
After that, she was also diagnosed (or it was just suggested to her, or mentioned, or she misunderstood or is straigt up lying, I don't know) with an unspecified 'metabolic disorder'. I don't remember when though or what type of specialist told her that. She also rarely even mentions it, so I'm assuming it's just Jaquie being Jaquie and her doctors being idiots.
Also: she is supposed to be on 24/7 feeds. I don't know, but you'd think that would keep your blood sugar pretty stable?
No. 421738
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>>421734Amanda was confused for Jaquie on her IG and it's a compliment y'all
No. 421745
Oh, kek, that new intro with double narration, the obvious bad cuts, bad mics and then painfully low volume on the actual video.
Such skill.
Also, I don't know if I'm squeamish but the idea of getting dog drool on everything (fucking clean clothes) disguts me.
>>421713It really got to me too. Eat one whole one and let someone else eat the rest or something. So irritating.
No. 421756
>>421727It's a liquid, those go through the stomach a lot faster. Gravity helps in this case. There's a lot of crazy things in the video, and while chocolate milk may not be the best choice for someone with GP, that is actually one of the things that are least crazy.
What I don't get is if she already ate more than she could handle because of her blood sugar, she didn't just opt out of the meal altogether. Especially since she had already spent the previous night vomiting. If I were in her situation, I'd just up my feed rate a bit and take it easy the rest of the evening.
No. 421799
>>421797I thought it was Harlow "alerting" and her not knowing what it was for.
(Reality: Harlow is a dog. Dogs nudge people with noses. Harlow nudges Jaquie, Jaquie tests blood sugar. It's within normal range but she says it's low. What a surprise.)
No. 422262
>>422191(blogging warning)
nOH can happen with POTS, it's called neurally mediated POTS and that's what Dr. Grubb diagnosed me with along with EDS. Northera helps to treat it so well, so honestly if this is what she has and her POTS experts are trying ports and tubes and toys rather than one newer med, it makes me suspicious. One should always take the path of least resistance
No. 422293
>>422262I'm pretty sure she doesn't actually want help… She just wants accessories and appointments to make her look as sick as possible.
Also learn to sage
No. 422354
>>422328That's something that makes me so suspicious of her
Like even specialists will need confirmation that you're exercising, drinking all your water and having salt before they would do meds and THEN there's saline. And saline would start at once a week, not everyday
Sage for medfagging and just being annoyed at jac qetting special treatment
No. 422431
>>422354Even after exhausting all other options, a lot of doctors would deny saline. Especially in my area, anyway.
(Blogging here, but I was not controlling my POTS even with heaps of water, salt, compression socks, exercise, and the highest dose of beta blockers I was able to take safely. And I basically got laughed out of my doctors office when I just enquired about saline infusions as part of my treatment plan, even though I had evidence from past saline infusions that it greatly benefited me)
No. 422434
>>422429Anons in this thread have made extensive screengrabs/notes of how her diagnoses have advanced. She's always been secretive about medications though and honestly unless she pushes it through her port on video, I don't think it's mentioned.
I'm sure she did say once that she didn't use regular pain medication for "EDS" pain. Which makes me wonder how the hell she got ketamine infusions!
No. 422436
>>422354She doesn't even leave her house or stand up. Why does she need it?
Blogging buttt I personally had saline infusion (with a peripheral IV ffs) once to twice a week for a while over the summer because the postural changes in PT were causing weird presyncope despite wearing compression and pushing oral fluids. It helped but it wasn't a miracle like these people like to make it seem and I stopped going (not like I wanted to be there in the first place, infusion centers are sad) when I could confidently get through my PT without incident.
I could understand her using it to help her get off her ass but Jaquie sits on the couch or sits in a chair. She doesn't seem to be trying anything that will make a poitive physical change.
No. 422448
>>422431Sorry to hear anon, im in a similar situation. I'm assuming it's because the effects are extremely temporary and they don't want to be the prescribing doctor of an IV treatment. I have POTS and random hypotension so I cannot take beta blockers but other meds make by BP too high. I'd love to be one of these cows with infusions whenever the fuck they want!
I've heard Grubb and Suleman (pots specialists) don't prescribe infusions anymore but Suleman won't deny that it would help. I wonder if something happened or if it's just annoying to set up.
Compression stockings are great though! Someone should send Jaquie some and a set of resistance bands.
No. 422673
>>422435That was me. She was on two different meds for her POTS. Florinef and the other one I'm not sure of. She still is on at least one type of medication, because there was a lot of drama about that recently as she had to stop it for I
think insurance issues. In fact, the reason why she suddenly could walk short distances without her walker just before her wheelchair was delivered, was because they were able to restart her on it.
I won't post the screencaps again as it takes too much time, but the timeline was (give or take):
1. Jaq has dizzy spells when bending down which she says is due to BP issues for a long time
2. starts meds for low blood pressure
3. second med for low BP
4. someone mentions POTS and suddenly she starts complaining of high HR as well
5. diagnosis of orthostatic intolerance plus advice to do exercises lying down
6. Jaq starts angling for IV saline
7. finds a doctor who diagnosis her with POTS and is willing to prescribe IV saline at home 8. doctor drops her after prescribing 250 ml saline only once on account of 'not being comfortable with it'
9. Jaq finds another 'POTS literate doctor' - said doctor gives advice on compression leggings, exercise while lying down, and prescribes IV saline all at once
10. Jaq starts home infusions, 1 liter at first and then two
11. doctor refers her for a port after only two two liter infusions
Basically, the timeline is pretty crazy, but
>>422292 is wrong about the particular kind of crazy.
No. 422675
O, and if you are bored and want to read what our little princess herself wrote about it, you can look it up here
>>414965The episode on how she got her port and IV saline is in the first thread I think, I'll try to look that up as well.
No. 422676
>>422675IV saline saga is here:
>>407608Oops, I didn't see there was a new thread. I didn't read it all the way through and was just reacting to posts as I was catching up.