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Jaquie Blake Beckwith, AKA chronically_jaquie, is one of the general Munchausen's/OTT thread’s (current thread >>>/snow/484900
) Munchie Queens.
new Google Doc spreadsheet https://docs.google.com/spreadsheet/d/1NSkEmPhXjkaO2q0MjJ3NUAPwwZv7tGff2VCJrOUp598/edit#gid=0
- She has a Patreon for people to pay her to be "sick".
- She appears to have maybe? a few genuine illnesses, but overall contradicts herself 99% of the time.
- She has two newly-separated button tubes 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, MCAS, narcolepsy, cataplexy, autism, unspecified immune problems, a mutated mitochondria, Complex Bullshit Disorder, and too many other things. Surprisingly, Factitious Disorder is not on her list.
- She appears to be copying Mary Frey, but has skin walkers and Jaquie wannabes that follow her every move.
- She loves her pain medication (di-lah-dud)
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.
Previous thread >>>/snow/477337
Who says she is eating them? Seems to me she doesn't. I assumed >>485254
They're unpeeled. Unpeeled and uneaten. I guess she could
be eating other
bananas and those are the extras…
I've been thinking this as well. Because up until this point she's had ALOT of crap done to her but nothing even remotely close to the RNYJ. Most of her other pain and symptoms are easily dismissed as nonexistant or uber OTT. But she can't fake the pain from her very real RNY. Look at it this way– if you go around saying that every day someone comes up and punches you in the face but you just shrug and go about your business, but then one day someone comes up and ACTUALLY punches you in the face…would it make you stop and reconsider your daily bullshit? Because now that you how it really
feels to get punched and look back at your lies you realize you look like a total asshat. (Generic 'you' in this example, don't want any anon to think this is directed at anyone here)
Narcissists have an unbelievable ability to have a degree of self reflection (maybe not of a deep mental kind but some form) when it comes to themselves
and how something is affecting them
. I was raised by one, they can def feel some form of sympathy/empathy for themselves
and ironically it's usually a massively OTT display of it. It's just everyone else they feel nothing toward unless it directly impacts them
in a big way. And again, they only feel for the portion of it that has to do with them and them alone or something that causes them to lose face or take a blow to their self esteem that is already so fragile. So Jaq creates a false persona of sick girl that gives her inflated ego that she knows deep down is a lie. But she's already running so fast down that slippery slope she can't stop the momentum and has to keep sliding down to survive. Has major surgery because the facade was starting to crack. Instead of repairing it the surgery cracked it even more and she knows the games almost up. A trapped narcissist goes into a mental death spiral pretty quickly and starts making desperate and obvious attempts to repair the only important thing-their image and false inflated ego. End tangent.
Yeah, I think if she had the awareness to think long term and to realize what she's doing, she would have backed off after the port surgery or her first tube surgery. Instead, she dove headfirst into a second, more invasive tube surgery, and clearly loved the attention. She’s too obsessed with the asspats and munchie fame at this point, because she is a narcissist. However, some of it also may be her age, which definitely can cause the inability to see long term consequences. When she’s 30 and no one cares any more, she may regret everything. Or she won’t, because she is incredibly narcissistic. I don’t see her getting away from manipulating people into caring about her any time soon.
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Pretty sure that's fried chicken on JanJan's plate
Well, that certainly explains why she didn't react at all when people pointed out to her that Julian had been on TV. It's odd that she couldn't even bring herself to say something like "yes, I have seen it!" without having to say anything
about her and Julian being in contact or not.
I'd say good for him. I understand you can't say too much (although it IS a true pitty) but we can speculate, of course. I'm guessing he wised up, probably helped a bit by what he was reading her. Maybe she tried to pick his brain for details about his conditions and he finally realized that it wasn't because she was interesting in him
, but it was to further her own agenda.
I don't know if I believe people can sense other peoples emotions in this sense, although to be honest I have experienced similar things when I was younger. Could be coincidence, projection, etc. I don't know.
But if I assume for the sake of argument that you are feeling something that has to do with Jaquie, then don't forget she probably IS in real pain. Possibly for the first time ever she has felt and is feeling real pain. I'd say it's quite possible she is feeling depressed because she was in a lot of pain and coming home from hospital is somewhat unsettling for a lot of people. Even if you're glad to be home, often coming home after a long stay makes your emotions come more to the surface. Maybe
she also is realizing that she did this to herself, and her mental state would certainly not be helped by opioid withdrawal as well.
I don't know how to explain it but if you've had similar things hopefully get it. It's not really a thought so much as just a feeling. A knowing without having to think about it. Like when someone asks what color is this and you say red. You don't think
about the answer you just feel
that it's red. Fml I'm horrid at describing. But whoever's hurt I'm feeling it's not just a little depression. It's a desperate and terrified kind of defeated hiding in the corner shaking kind of feeling. I think she is scared and wants to be different but doesn't know how and thinks everyone will hate her. It feels insurmountable but it's not. Anons, think about how scary making a MAJOR life change can be, especially one that involves you standing up and admitting that you have really, really messed up. In a way getting the courage to take the first step feels like jumping off a cliff and not knowing if you have a parachute or not. Fuck this woo and I did not ask for it.
Don't forget, her entire life and identity
is this so to admit it was a lie and she needs help is basically wiping her to a blank slate that she has to start all over at discovering herself. Kinda a terrifying prospect for a 21 year old
Are you forgetting the massively horrible person that Jaquie is? Not only has she dug a hole for herself, she's been encouraging and coaching other people to do the same along with her.
She wasn't the person posting here.
Screenshots last forever.
So they're not friends anymore. He's posted here and lurks so it's unlikely he was much of a friend in the first place. Maybe nothing specific actually happened to end it. If you look at her IG she's lost MANY friends due to her bullshit. It's nothing new.
Judd was PISSED at Jaq in the last vlog. Their interaction when he was about to leave to go get dinner was pretty telling that something
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We were right, she just loves the attention. Vlog coming tomorrow!
She hasn't been able to shower for what, two weeks? And that
was magical to her? She clearly never was in or had major
surgery or even was bedridden for a severe flu or other sickness. I'd like to know what she would think of not being able to shower for six weeks or three months after being in a cast from neck to hip (or shoulder to knee, whatever: any big cast).
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Interesting chain of comments on her recent Instagram photo. We can’t see the other commenters because possibly she’s already blocked them? She’s waists no time!
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Port was still there as of January 18th, you can see the tube coming down.
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Take a look at how normal the both of them used to be. I’m always searching both their instas for dirt. More photos to come. Besides the service dogs which isn’t a huge deal, they are wearing normal clothes, taking care of themselves. I mean Jesus.
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I also decided to post this goody. Because how could someone with supposed EDS be kneeling on fucking CONCRETE??? I knew she knelt on the carpet but concrete, cmon Jaquie. They both are so much more able bodied in this photo. If you have EDS you would’ve always had it.
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And then thirdly… this is apparently Janiece. Of which I am SSShhhooooookdd. I mean who the fuck is that? I can’t believe she used to look this decent!
This cant have been that
long ago could it?? Isn't Orion only like 1 1/2 now?? He's closer to full grown in this pic than puppy
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I also just found Jaquie’s old twitter. I know it’s her because of replies with Judd and the age. Seems our girl does have a sense of humor and is aware of certain social construct. You’d have to be to say something like that.
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I’m on a roll today YA’LL as Jaq would say. Apparently there’s an exclusive Patreon page on Facebook… oh boy how tempted am I to get in there. Can’t imagine the milk. I’m still digging for dirt, I have another photo. Hope you guys don’t mind.
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I’m having a blast here. All this is just right on the internet for eyes to see. Anyways, found this post searching Jaqs name on FB. Poor girl thinks she has to justify her actions because Jaq has poisoned her mind into thinking if you’re sick you NEED a wheelchair, mask, and a port. Here’s a first hand example of her evil doings on the younger generation.
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We'll start with this one…Skiing with your service dog? Not my fragile hEDS Jaquie!
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Let's follow that with this one! So crazy how her epilepsy seems to have magically disappeared!
She can do this partly because of how the healthcare works in the US. Doctors may theoretically have copies of your records and diagnosis/treatment from other doctors. But do they actually read it
? Most likely not as a normal practice, only if something comes up. Because they don't have time. So they have to take the patients word for it because 99% of the time the patient isn't feeding them bullshit
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"looking for a doc that is more knowledgable" AKA a complete idiot who will give me whatever I want.
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And already she's seeking out IV fluids when most POTS patients spend years trying other things before getting fluids.
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Aw…Poor Jaq, the doctor didn't believe her!
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Gotta symptom shop so she knows what to tell the doctors!
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I think this is her first mention of allergies/epipen.
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Gotta get those symptoms just right to lie to the doctor! Also, so freaking upset how quickly she got fluids.
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My gp treats me for several conditions diagnosed by other docs and specialists. I seriously doubt she has ever actually looked up the diagnostic testing in my record to verify my claims. What's surprising is that her over-kill of encyclopedic medical knowledge should
have been an immediate red flag, especially her being so young and only recently developing symptoms. If someone had been sick for 5, 10, even 20 years and researching, studying, looking for answers etc then it might not set off as many alarm bells. Jaqs should have.'
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Starting to crave that sweet sweet IVIG!
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Further symptom shopping to get the IVIG!
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AKA Which doctor will give me a diagnosis without actually testing me
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Guys, Mayo couldn't even figure out our speshul gurl…Also first mention of MCAS I believe.
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found this on tumblr, do I direct them to this thread or not?
Sage for not sure if to sage or not.
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This member seems to be suspicious of how suddenly she got ill when all these things are genetic!
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They DO have a good point about her immunodeficinecies interfering with the Lyme testing. That should have immediately given cause to Jaq to revisit that disease….but only if she truly believed
she had immuno issues. Which she doesnt, so she didn't care
Kek prob cuz we understand the chronic
part of chronically ill. To me if you have a "chronic" condition that can be 100% controlled with meds or some kind of intervention, I would consider that cured, not chronic. Mayhap Jaq considers a rebranding as perpetually cured jaquie?
Personally I believe Lyme is like mono and in almost all of us but only causes trouble if your immune system can't stay on top of it (injury, sickness, major stress etc). The fact that Jaq has lived all over the world wouldnt help diagnostics since there are hundreds of strains worldwide and the lab testing only looks for some
strains. And usually they're only checking for tick borne illnesses that are common around your immediate, current vicinity and not looking back to where else you've traveled or lived. She could have no Lyme but erlichiosis or babesia or other disease transmitted via tick.
I told Julian I wouldn't post out of respect to him, he knows who I am, and I don't want him getting slandered by her.
He's too much of a respectable person for me to fuck over like that - sorry :(
Yes he's aware I've posted on his behalf and he's thanked me for it. He does not wish to comment on anything that has happened, he gave me permission to confirm that he and jaq are no longer on talking terms >>486104
Julian has said to me that he would come out and say exactly what has happened, BUT he doesn't want to be slandered, which I can 100% understand.
He's also confirmed that jaq knows the threads exist but does not read them, because she avoids anything negative towards herself & does not like confrontation, so sorry to whoever said they hoped she had found the thread and that's why she stopped blogging, that speculation has been ruled out :( >>486126
I have my own past with jaq, but I don't particularly want to discuss all the gory details of it, but the long and the short is she was making out that my doctors were wrong and she knew what was wrong with me 100% and that I should get another doctor. Which is apparently a typical jaq thing to say and do to people, I removed myself from her BS when I realised what she was doing.
Ohhh do tell, anon.
I'd like to hear the theory. At the end of the day - it is only a THEORY. Not fact, pure speculation, therefore you can say what you want, anyone who thinks lolcow is 10000% facts and not pure speculation, is probably an idiot if the people in association with jaq did see it, they'd probably laugh and think "okay then"
She was giving me tips on what to say to them, to push them in the "right direction" in treating my illness, such as saying things to them like "maybe X Y and Z would improve my quality of life" "I am miserable how I am right now, maybe this would help solve that issue" etc, saying how to angle for things you want and basically teaching me how to outright manipulate doctors, which quite frankly I found disgusting.
I would rather trust my doctor than someone who punches holes in their body for fun, and not the fun type of trendy piercing holes, she takes piercings to the next level!!!
There was also the "I've been doing some research on my diagnosis of illness X and medication Y and Z have helped X Y and Z, maybe I could try what they're trying with medications A B and C haven't worked" technique.
Of course, there's also things she recommends like playing up on symptoms but not making it too obvious, and the jaq classic "if the doctor doesn't believe you, ask for a second opinion, if that doctor doesn't believe you, ask another doctor, and tell them all exactly the same thing"
Manipulative is an understatement, she knows how to lie and she is very good at it, but she's not good at keeping her story straight. I am honestly convinced she has a personality disorder.
I think it is more a case of countless people are starting to open their eyes to the amount of shit she talks, and how much she lies.
People are realising she is contradicting herself and more genuinely sick people are asking their doctors about the treatment options she takes, which then makes their doctors say "what the fuck?", then they explain jaq the magical adjustable barbie car driving unicorn to their doctors, and their doctors are like "what the fuck? No. That's now how it works" and then they get educated by their medical professionals, google Münchausen syndrome and end up here.
Sage for speculation of how people are realising she's full of shit.
This happened to me actually. I got diagnosed with a condition that AJ claims that she has. When I mentioned the treatment plan AJ has for this condition, my clinician basically told me, "No. This is not a treatment plan that is used for the condition that you have." To say I was confused was an understatement.
This is why this is so dangerous.
So this is exactly what dhes doing to janjan Bc she is not accepted by real sick ppl like Julian she is trying to push others to be sick so she’s not alone!
I see many connections between you and janjan, do you happen to janeice at all
I am not Janiece, but I am pretty sure that's what she's trying to do to janiece :/
Unfortunately I am really sick, and what made me realise she is full of shit is the way she was trying to teach me how to get the "best" medical treatment (the most extreme) for minor illnesses. I'll give it 2-3 months before Janice's has a shit bag or a nose hose because jaq has told her how to get her own way, then again janiece is as dumb as a box of rocks, so I doubt she will have the intelligence to get that far.
Oh! Your comment said "do you happen to janiece at all" I assumed you missed the word be or know.
Unfortunately I do not know her. I wish I did because I would be 100% educating her on what black magical fuckery jaq is trying to pull on her.
I honestly hope both Judd and Paul form an intervention on the two of them and put them both in therapy.
I knew it!!!!!
She is a narcissist and a big psycho when anon speculated maybe she was taking days off to boosts Jan Jans page I knew that was unlikely Bc even if something seems altruistic a narcissist and psychopath always have an alterier motive she would never do something for someone else for example help Jan get a diagnosis unless it benefited her in some way. Especially since more sick ppl is more competition in her dumb ass mind!
Losing Julian as a friend is really bad for Jaq. Not because like, she lost a friend, I'm sure she doesn't care but because she's featured him in her vlogs multiple times. Her viewers recognize him, followed his insta, noticed his news feature, and they like him. Jaq already committed to her viewers a standing date with Atlas and Harlow at the dog park. They're likely going to notice and it's not something she can cover up with medical words that they won't look up.
Also, I'm sure he doesn't want to rock the boat but if I were him, I'd ask her to either remove or edit him out of those vlogs. She's making money now from his image, in a way, and that's disgusting. It might have been ok as friends but now, no.
Pfft, don't be sorry.
I'm more bothered about the impact jaq is having on other sock people. It's not right - she needs to be stopped and the sooner she is stopped the better. I think what makes it worse is that Judd is a cop and is backing his fraudulent wife, without even knowing she's a huge fraud. I really do think he takes all of her words at face value and doesn't question any of it. I really hope that the other anons are right and that he has clicked on to what is going on, and has questioned her and called her out, since Julian said earlier that she avoids any form of negativity and doesn't like confrontation, she never responds to it - she just deletes it as we have all witnessed here. I wonder how she will respond to Judd and her family calling her out on her shit, if that is what's happened.
I hope it is really haha!
I was thinking they should be stricter on the chronic illness clogging, such as "no giving information on who your doctors are, what your treatment plans are and what medications you're taking, life your life as you would, but don't let your illness consume your life entirely"
That is the rule I tend to live by for life in general, it works wonderfully in real life and I am pretty sure it would spread positivity on the YouTube community; just because you're chronically sick, doesn't mean your entire life is your illness; unless you're jaq or jan. In which case, fuck living a normal life, I am too sick to do anything, but hey I'll prep raw food and clean the house while sipping at my unicorn blood to keep my super sick energy levels super high so I can do the things that genuinely chronically sick people can only dream of doing
Because she's a manipulative little munchie…
I wonder when she started her dive into the pool of illness. Was it with the "epilepsy"? Did she like the attention of having fits and a service dog? Did she get high off it?
From what I remember her saying, it had something to do with her attitude toward Jaquie's chronic illnesses. She went NC with her for about 6 months.
Prior to this, Jaquie told her mom that there were conditions that she needed to fulfill in order to get back in Jaquie's life. Apparently, her mom fulfilled the conditions and here we are.
lemme guess, you're the empath farmer right?
like the other anon said, thanks, but it's fine, i dont need other people feeling sorry for me
besides, it's chronically jaq's thread, not psychotically anon's thread kek
i wasn't trying to be an asshole, sorry if it came off that way, was going for a playful banter vibe but i guess it didn't come across well
didn't mean to offend anyone
It's okay! I probably read it wrong too!
I'm just glad there's a place like this for those who used to look up to Jaquie.
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My fucking head just exploded. Check out the "gift ideas" list!! She made this in sept/oct 2015. Isn't that when she was symptom and side effect "researching" on all the fb boards? WHAT a conniving little bitch. Couldn't figure out how to link to the actual list
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Kek ever the toddler
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so she wanted a rheumatoid arthritis awareness bracelet, but for her vomiting syndrome? what???
maybe a list of gifts she wanted family and friends to get her? when is her birthday?
also maybe leave the rheumatoid arthritis people alone and stop trying to steal their awareness colors for your fake diagnoses jaquie GOD
I can't help but chuckle at the irony of how easy it was to get an answer to a question, here on lolcow, and we aren't even all here to raise awareness about our assortment of maladies. This farm is my happy place! If someone had asked Jaq a question in the comments or patron party or anywhere else, she'd just say everyone experiences chronic illness different y'all! Yet she's
the one proclaiming herself an advocate that's spreading awareness.
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Okay now this is just ridiculous. But now I know that huffing, sniffing abuse and inhalent abuse are all red ribbons. How many names does one thing need ffs?
In the anon who was explaining that jaq was trying to tell me how to push doctors in the "right direction" for treatment plans. I never specified the illnesses that I have.
If I came across that way - I apologise, I was just trying to give some insight on how when I reached out to her last year she basically gave me an all out lesson in what to say and how to convince my doctors I needed better treatment, but I stuck with my treatment and actually improved, even though she said it wouldn't.
That is true milk. Yes, at times, some
farmers like to go on blog fest but on the same hand some
farmers wish they were mods and get butt hurt super easy. So there's both sides. I would hate for potential new farmers to be afraid of posting true milk due to having to use a quick example. Especially if they have interacted with AJ, JanJan or Paul and Judd in real life.
Wow. That's bad. Not that I'm surprised, but it's bad. I am sorry that happened to you. But I'm glad you got out. It's almost cult-like how she draws people in and then teaches them to be manipulators like her, isn't it? I'm always amazed at how people react to her IG and YT. People say things like that she's such a sweat soul, that they are 'glad to see her beautiful smile again', that she has changed their life, etc. It's blind adoration. They really
think she is this special person who is doing so much good for the community. While in reality.. well, I don't have to delve into that here. We all know the ugly reality of the Jaquie train.
From what you're describing how she was basically teaching you to manipulate your doctors, did you get the impression she knew what she was doing, or did it seem to you she actually thought she was helping you and is just misled herself? I wonder about that sometimes.>>486143
OK, good to know Julian knows about this. Also nice to have confirmation that Jaq does know about this thread, but doesn't read. You won't believe the discussions we've had about this in the past. I have to say, I'm kind of surprised she would have the self-control to NOT read more if she knows about this thread. I'm pretty sure if people were talking about ME, I wouldn't be able to keep myself. I would probably hate myself for it, but I would probably read periodically. To be honest I don't know what to think of it. Does anyone (it appears there's more then 1 ex Jaq anon here now) know if she addresses the kind of critique we give here? Or does she just write it off as hate? I mean, does she know that we point out inconsistencies and that we know she has factitious disorder, or does she just think we all hate her and we think she is faking for the heck of it? Factitious disorder is an actual disorder and although it entails feigning - so yes, faking - illness, there are always deep rooted causes for it and it is difficult to treat. We don't say she isn't sick, we just say she is sick in a different way than she wants people to believe. There's a difference.
So, you're saying she's a really good liar? That's interesting because she claims she has Autism.
For those of you who don't know, Autistic people tend to be really, really bad liars. As in, you would catch them in the first 5 seconds bad. So, it's just interesting, how Jaquie says she has Autism, yet is an amazing liar… Either she really doesn't have Autism, or she's an outlier.
It's like she knew what she was doing because I explained that my doctor had recommended A and B - but it didn't work well for me, then she said why don't you try C, explain to your doctor that "X Y and Z shows that C is the best option for me"
It really is like she wants people to be able to manipulate their doctors into things. This was before she got super famous on YouTube; this was back in the days of when she had maybe 6,000 subs and her port just fitted. She said things like she had to push her doctors in the right direction and that I should do the same as "you know what is best for you"… basically she said don't trust doctors - they know nothing. "Advocate for yourself" and "push for what you want"
She got a new face mask. I have one of the same brand and I doubt little miss SPD will like this mask because the nose piece wire is extremely hard and sorta uncomfortable. The mask is way cheaper than a Vogmask though and has disposable filters so…
Maskfagging I guess.
Okay so here's the most important things I picked up from the video:
1.Home Health says she's healing very well (No slow EDS heals).
2. Insurance approved IVIG at home.
3. She's starting at home PT again.
4. Insurance approved joint braces and custom AFO's.
5. She's reached her goal rate for 24 hour feeds and is working on daytime rates, but so far seems to be tolerating them pretty well.
6. She had a headache Monday night and an allergic reaction which they "thankfully treated with IV Benadryl".
7. The shoes Harlow brings her are little booties, not something you want to wear if you have the ankle stability issues you claim because they offer no support.
8. Judd only showed up at the end of the video for dinner, so Jaq was pretty much alone all day, didn't talk about falling or fainting, just that she was fatigued.
I agree. She seems extremely happy in this video. Even when she was "tired" she just gave the whole "cat got the cream" vibe.
Also interesting to note that she seemed to do fine on her own the entire day, not much help needed I guess.
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Just thought I'd share this. She was pretty darn quick to respond.
She's not going to admit anything. The most drastic thing she would do is disappear and then try to pop up later in a different fashion.
If she was to find any way to leave this behind, I would guess that she will just choose a different path for her channel - one not based on her "illnesses." Instead, she'll come out and say she is tired of vlogging about her illnesses and will do something else instead. But she's not interesting enough to sustain that, so her channel will die out. That's my prediction.
AJ is right, the commenter obvs didn't see that reaction but she has been watching long enough to know IV Benny is nearly an everyday thing. AJ has
filmed several of her supposed reactions, many of which farmers feel are either faked or blown out of proportion. And of course AJ is all "we, we, we" what the fuck ever Jaquie.
Spacers are recommended for adults, too. Some doctors are more insistent than others.
And breathing treatments delivered with a nebulizer are called precisely that.
Oh, well that's different, then!
Which med was it? She was last pictured with Symbicort and ProAir (both red inhaler).
I'll place 2 bets, bookie!
1) She seemed enamored with those inflatable leg cuffs that she used in the hospital to prevent blood clots. I think her next unnecessary device will be those cuffs because of her "limited mobility".
2) Mary Frey's been talking a lot about her blood sugar issues lately, so I think that her next step is to start complaining about low blood sugars so that she and Mary can be DEXCOM buddies foreverrrrrrr!
Why not go for three stomas and have an ostomy in addition to her G & J toobz? kek
And I second the other anon with the DEXCOM.
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She's really proud of it too, because she didn't "use a recipe" and made it "all up [her]self" as if that's really a skill for something like stuffed chicken. It's not like she made her own baking recipe.
Maybe speculation/nonsense, but does it seem like she doesn't serve Judd much food? She puts so very little sides on his plate. Judd's a fairly muscular dude and he works long shifts. It just doesn't seem like it's enough to feed him after a 12-hour shift + helping her mom with errands, etc.
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OMG. You guys. This was his reaction and I'm ROFL
She's been mentioning muscle weakness (since infancy!) a lot which really isn't a huge part of EDS.
Congenital myopathy? Maybe EDS got too trendy for her so she's looking for something more rare she can subtly rewrite her history to fit.
Spacers help distribute the inhaler spray to the airways, and you don't have to get the timing as spot-on. They also help if the patient tends to cough when breathing in quickly (which you have to do when using an inhaler without a spacer).
(& showing my asthmafag credentials here, breathing through a spacer is a handy home neb trick if you want to avoid having to go to the ER)
K first, thanks Anon for that Glorious screen cap, was gonna look for it myself later but I'm lazy. That is the look of a man who regrets his life decisions.
2, maybe she stunts his portions so he will be hungry enough to finish what's left of her food and she won't technically be lying about it?
Hi bookie anon. I'd go for "urinary retention" if Jaq wasn't such a prude about pee and poop. No way she'd willingly have a catheter.
I think now she's got the AFOs and there are hip splints coming she'll look into continuing the cyborg set up with some good old fashioned CERVICAL INSTABILITY. Collars ahoy!
kekkkk omg i live for Judd's snarky expressions!
JUDD are you reading?? Please give us signs!
Muscle weakness since infancy, but she's a black belt in some martial art… right, Jaq.
I think the muscle weakness is what she was trying to use as her "mitrochrondrial illness". But mito is a yes/no thing, not a lot of middle ground, and I suspect she won't be able to bullshit that for long.
The first thing I'd imagine docs telling her is that she needs to try to eat the stuff she's supposed to be eating anyway – bland, BRAT, etc. That is, if she can get the GP dx'd using Jaq's method. We know she doesn't obey this.
Also, question – if she has delayed gastic emptying, how is the shitting out any thing she eats within 30 minutes, supposedly?
I also believe that in an older vlog, Jan joked that Jaq said Jan would have to get a feeding tube next. That's fucking creepy, what with Janiece trying to get a GP dx now.
It's the chronic illness version of throwing the bouquet!
I know that joke was tasteless. It's just unsettling how they're talking about feeding tubes like people talk about marriage, "You're going to get married next!" "You're going to be the next one to get a feeding tube!"
She doesn't have foot drop. She's copying off Julian, just like she copied his wheelchair, his autism, and his EDS, she's trying to copy off his nerve problems too, because she's a pathetic munchie who can't think of her own illnesses so she steals every fucker else's illnesses
Sage for rage
sorry, samefagging, clicked too soon
I think she decided to fake foot drop when she was trying to decide which obvious-but-customisable splints to go for. AFOs are often used by children, and needed usually permanently (for things like cerebral palsy) so can be widely customised.
She would have bitched about that. I had one and hurt a lot afterwards. Plus I doubt she'd miss the chance to vlog about it.
Though she might have decided to "forget" about it when the results came back negative.
yes he does, and I'm not sure if shes copying him or not, but if she is then she has hit lower levels of low than I thought imaginable.
I saw red flags and how pissed off Julian was in her vlog when she was showing off his wheelchair, I really hope Julian does come forth and out her for the monster she is. I feel as though we would all support his decisions here & defend him from the backlash from stans, right?
Irrelevant to this post - but important ish reminder to everyone else:
I've also just remembered that jan jan said she wishes she has a feeding tube when she was on live stream, someone asked her "do you have a feeding tube?" And she said "I wish"
Oh dear, I hope I haven't outed myself to many people. Although, only a few know about my upset so that's okay.
I really do hope more people don't find themselves questioning their own illnesses and experiences because of some twisted, lying person. No one deserves to feel like that.
Fingers crossed more people find this board and know they're not alone.(stop medfagging and post this on tumblr)
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Tech idiot, couldn't figure out how to post link. In nutshell, this might be one of Jaqs AND janjans tricks.
So excited to be able to post again forgot to say what the anti-diarrhea does kek
Taking too much can cause a euphoric rush and……heart problems. So, it'll get you high and help you get a diagnosis (or two or three) that you don't have. But it'll look like you do. Jaqs speciality
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I noticed only some of her vlogs have the "cc" next to them. Does that "cc" indicate vlogs that were captioned by the company her patrons help pay? And if so is it possible that JAQUIE is being paid to caption them? All the most recent vlogs esp since her surgery don't have the "cc". Thought I remembered seeing somewhere that anyone can apply to do the captioning and be paid. Might be wrong, long day.
Agree. I strongly suspect BPD in mommy that (as is common) also caused BPD in jaq with a dose of npd. I'm super curious what gave her the balls to go NC for half a year though. Because she's 21 now so presumeably this was when she was 19 or 20. That's young. And she says she's autistic. So, young autistic girl cuts off mom for 6 mos, gives her a list of requirements to be allowed back in, then rebuilds mommy relationship to point where she trusts her enough to let her caretake and be around at Jaqs most vulnerable times
(post ketamine, post surgery etc)????? She may claim no mental problems but she sure as muthafuckin shit didn't do all that without the help of a lot of therapy. No fucking way.
I already called her out on this on her video when I saw two months worth hadn't been captioned. Her excuse was she doesn't make enough on patreon to caption all as she's below her goal (determine that she makes a min of.$250 from her 5 executive producer patrons). She also uses money for medical expenses.
Despite the fact the video she put out announcing her patreon said first and foremost it was for captions.
I called her out months ago, my comments ended up shared here. But yeah, she's just spending patron money on herself.
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I must get access to this! I’m sure this contains stuff before her spiral!
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Found her etsy
Very interesting indeed
She also rarely if ever mentions CVS anymore
I'm hoping someone'll do a parody of the chronically Jaquie channel. She would LOVE that kek
Or vlog recaps with cool sound effects every time she
1) mentions a diagnosis
2) touches her hair or face/looks to the side
3) pushes IV anything
4) eats GP unfriendly food
I'm an ex-patron. The Skype parties typically lasted between 30 - 60 minutes depending on how she was feeling that day. She would get tired at the end. And she would end by telling us she was tired and she was heading out.
She didn't look confused/brain fogged or overstimulated to me. Without turning this into a blog, I struggle with reading body language because of my ASD. So the only time I could tell that she was struggling with anything was if she came out and said so. I really wish I could be of more help.
Not with her SPD.
The woman in the story doesn't appear to claim to have any conditions necessitating an ESA. She's just a pretentious artist trying to cheat the system.https://www.instagram.com/ventiko
Sage for OT.
Playing doctor here, Janjan has adenovirus. Ironically, it IS contagious. Don't tell jaquie or she'll come down with symptoms because she's immunocompromised kek
Also ironically given the 'does Jaq have Lyme discussion' from whatever night was, I just felt a crawling sensation on my neck, which usually is fun nerve stuff. Nope. It was a tick.
Back to janiece! https://news.google.com/news/amp?caurl=https%3A%2F%2Fwww.cnn.com%2F2018%2F01%2F30%2Fhealth%2Fadenoviruses-mimic-flu%2Findex.html#pt0-519453
It sounded like a publicity stunt to me, also Jaqs style. Stage cute animal things (ranch dressing) or some customer service issue with a major airline (peacock denial) and go viral, get new subs/fans=money. End goal with Jaq is always money. And asspats. But she seems to think she's above having a "normal" job like all us ordinary peons. Not Jaquie! She's so wonderful her job is literally paying people to admire her and treat her like the munchie queen she is.
Also, I don't think Jaquie has SPD. Or autism.
I was being sarcastic re. AJ's SPD.
Not a publicity stunt. Ventiko was travelling from NY to Los Angeles and was trying to cheat her peacock's way onto a plane. She ended up driving instead.
OK, I know this has been said before, but what's the use of a home health nurse coming by five days or so after you've been discharged from hospital? I know it is customary for a nurse to come by THE SAME DAY you're discharged after certain operations (it is where I live, anyway). E.g. when you got an ostomy they often come to check on the patient because caring for it by yourself can be overwhelming at first so they check how you are doing. If you are discharged with tube feedings for the first time, they come by to set up the pump and explain everything because the hospital uses a different pump so you get a pump delivered and have to learn how to use it. But she already has a pump and also knows how to take care of her stoma. They only thing I can think of they can do is check her incision, but as she can drive, she should just go to her GP four wound checks. Most probable this isn't even necessairy, because I assume she has a follow-up appointment within two weeks or so with her surgeon (depending on the type of sutures they used). Yet not only did a home nurse come by, (s)he is coming next week and the week next to that as well. WHY?
As to Janiece: I'm with the anon who said she can't have obstipation only one DAY following diarrhea. Severe diarrhea, by her account. But her account makes no sense whatsoever, as I'm sure we all know.
First of all, if she would have diarrhea so severe that everything went straight trough her, she wouldn't be vlogging. And if she somehow did manage to vlog, we would see her walking to and from the toilet more often. Yet we only see her lying in bed. Second, if it was so severe they woulnd't keep feeding her even solid food and they would have her IV wide open to replenish fluids - which they hadn't.
It's also a bit suspicious that BOTH times she was admitted she came in with severe diarrhea and during her stay it went away. At home she had diarrhea again. Now she has supposedly gone from very severe diarrhea to constipation. As this is Janiece and Janiece thinks she has to go every single day and if she doesn't go she is sick, she probably just got better and doesn't have diarrhea anymore. She hasn't gone to the bathroom in 24 hours and she thinks that means she is constipated. That's my theory anyway. And as another anon said, if everything she eats comes out 30 mintues later, she cannot have GP. But this is Janiece, so there's no way to know how severe her diarrhea actually was.
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This is a comment from the video the day before. What. The. Actual. Fuck., Janiece? Come on!
Anyone care to 'guess' who the 'we' in her reply are? Doctor Jaquie and Janiece, maybe? Or, I believe Paul asked about this during her previous hospital stay. Suuuuure. Someone comes in with an electrolyte inbalance due to not eating and diarrhea (possibly purging) and instead of figuring out what's wrong, sending her to a dietician and making sure she sticks to her diet, you give her at home infusions. Sounds like a great idea, isn't it? If they TRULY would be worried about her intake, they should give her nose hose so she can give herself formula and extra fluids if needed. Infusions is VERY OTT. A tube even if for idiopathic diarrhea (that disappears after a few days in-patients and isn't even chronic but rather episodic when she is at home), but home infusions? Yeah.
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Some comments from Janieces most recent video.
1. There was some discussion recently wether she should be on a GF diet. In her Insta she said somewhere she tried it for her migraines and later that it first helped her GI symptoms but then it did not (anymore). So why she started it is vague, but she does not have celiac.
2. GOLD. She really
should do that.
3. She didn't think of that?? She either is very stupid, or she doesn't know how narcolepsy works. Or both, of course.
4 & 5. It's interesting how she reacted to a LOT of comments, including no. 4. and comments posted both before and after no. 5. was posted. But she didn't react to no. 5. Didn't fit her story, maybe?
P.S.: I posted this one first and then >>488001
but had to correct something in this one. That's why I refer to the 'video from the day before' in the previous post. Sorry 'bout that.
Although the nurse was wrong to ask that (well, ignorant; she probably meant well) I never understood why they should be allowed to take Harlow to visit her. Yes, she is a service dog, but her services are not needed
while she is in hospital. Judd brings her in, and he doesn't need to take her to be able to visit Jaquie. And Jaquie isn't alone, so she doesn't need Harlow. Apparently she also doesn't need her to do her life-saving alerts while she is admitted. When she is coming with Judd just to visit Jaquie, she is basically a pet they bring to cheer her up. And ESA's are not allowed in the hospital.
What does failure to comply mean?
How is her mom teaching middle school with a criminal record?
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Do you guys think this could be about… dundun…. Adjustable Jaq???? Opinions
Damnit anon you beat. Me to it. I just deleted my screenshot of this post.
Can confirm - it's about jaq.
She probably has some muscle weakness from inactivity. She'd need PT for that, not AFO's. Or she's just plain faking it, which is also possible. If she truly had foot drop, even partial foot drop like she says her rheumy dx'd her with, we would see it as she walks, and she wouldn't be driving
. Even many people who theoretically have enough strength
to push the pedals but have proprioceptive issues and/or lack control drive with adaptations because they either can't dose their strength or they have to watch their feet to know what they are doing. I know people with different kinds of conditions who are all able to walk - however badly, and all of them use a wheelchair at least parttime - but use hand controls for this very reason. (Mild) CP, EDS, M.S., chronic leg pain, etc. Jaquie claims have EDS which would affect her proprioception, small fibe neuropathy which affects sensation, foot drop bad enough to necessitate AFO's, undiagnosed 'horrible muscular pain since childhood' in her legs, hips that sublux often (which could very well cause weakness and pins and needles in feet and legs), blood pooling in her legs from POTS, 'horrendous' spasms in her legs quite often on top of
general weakness, but she is happily driving everywhere, as long as the drive is under 20 minutes.
Personally I think the brace and AFO company are just trying to get more $$$ from her. She hadn't mentioned AFOs at all until she went to get her hip/knee braces fitted and then suddenly she was getting AFOs.
She doesn't have foot drop AT ALL and if she did I think she would go for a fancy nerve stimulator rather than AFOs.
Agree there is basically zero milk in this vlog.
I did find it interesting that she chose to wear her wedding rings on a necklace, because supposedly they interfere with her wheel chair gloves. I could see the diamond ring maybe, the wedding band itself? That seems odd.
Jaquie had a really rough morning. In the afternoon they went to the aquarium, after which she went for a good long walk (in wheelchair) with Harlow, she edited her vlog, and initially they were even planning to go out for dinner, while she is still recovering from her surgery
I WANT HER ENERGY. What is she on? If that's her special K, I need to get me some of that! (Only my
pain doctor says it doesn't work for joint pain and not even nerve pain that stems from an obviously irritated nerve instead of a 'wind up' of the nervous system like in CRPS. As my doc is an actual
pain specialist and Jaquie seeks out quacks, it's obvious which one is right here. Unfortunately, I would say. I mean: what if Ketamin actually
worked the way she says it does. Wouldn't that be GREAT?)
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Here’s Jaquie’s excellent wheelchair driving skills as she crashes into a wall. I watched it over and over probably 15 times it was so funny to me. I also hate how she acts paralyzed when she’s in her wheelchair! There was a hole to look under where you look up to see fish and Jaquie was like “yeah you’re supposed to go under.. but..” and just trails off. Like bitch! We’ve all seen you crawl all over the floor and use your damn knees. You’re no stranger to being on your knees.
Maybe even more funny is how Harlow just follows her, to almost into that wall.
Also, the way she catches herself? Most EDSers as bad as she claims to have it would dislocate more than one joint from that. Think wrists, shoulders, and kneecaps.
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I’m just gonna leave this here
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And of course, she orders something drenched in cream. Why would someone who doesn't get hungry and gets her nutrishun from a tooob even care about where they went? kek.
Her 'slow healing from EDS' somehow only
affects the amount of opioids she needs. Odd, eh? Must be a suuuper rare subtype.
Nothing 'skim' 'bout that
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I also noticed in the vlog that she isn't doing much good of keeping allergens out if she's wearing her new mask like that. I have the same brand and the nose wire is very hard to bend, but once you get it in shape it really forms well to the face. (Doesn't even fog my glasses up)
Jaquie doesn't seem to have fitted the mask to her face, leaving a huge gap for all those nasty allergens to get into.
She switches to her vogmask for the aquarium, guess she wants to look extra sick with those valves.
you're not outed. we speak on IG so I've worked it out but obviously won't share this with anyone.
saged for Adjustable Jaquie Victim Support Group
I've wondered about something like that the last few weeks. Sometimes I would want to know a little more about the people here. Not to create another Instagram or to share illness stories or whatever, but just not be anon and know who is saying what. Plus having a little
more information about where everybody is coming from without having to fear bans for blogging. And who knows, maybe actually to help
each other through difficult times.
It would even help this board, because I'm no empath anon, but even I can sense that a lot of people are getting annoyed with the amount of sharing and blogging lately.
Maybe a board with an open part and a members-only part people can only apply for after x-amount of posts?
(Sorry if this
is against the rules, but how else can we organise to be in contact OFF this board without first sharing a little bit here?)
4.2 Do not share names, pictures, or social media of people unrelated to the drama being discussed, for example family members, friends, or coworkers.
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Haven't watched the rest so don't know if she adresses it in the vlog, but apparently she's on morfine. No wonder her diarrhea is gone!
She mentioned before being on painkillers for her abdominal pain, but who TF gives morfine to someone with abdominal pain? More specifially, someone with abdominal pain with no known cause?? Wow.
i skipped around because janjan is boring and without jaq manipulating her i feel like she'd be harmless but to sum up the video:
she had her GES
she doesn't understand how people can do the test outpatient because it's a very long test
she realized how hard physical therapy and occupational therapy actually are now that she's had to do it herself
she never believed they were as hard as they looked
she is supposed to be drinking clear ensure 3 times a day (in between meals)
she didn't mumble as much in this video
talked about the teddy bear paul gave her on their first date
appearances by her brother(s)? and orion
looks a hell of a lot more clean/put together than greasy ass AJ (this isn't a wk it's an observation to my eyes)
I think armchair diagnosing her mother, who we've seen comparatively little of, isn't very helpful.
I more suspect being the (much) younger, practically only child of older parents gave her a sense of entitlement.
This seems totally overkill to me. I didn't think people will say shit if they're not anonymous. Many people who post here were never part of the IG "spoonie" community so you're never going to figure out our identities, if that's what you mean by wondering who we are.
There's already a lolcow Discord, why don't you join that or something?
We can still be anon, but have a username so you know who's saying what. That's what I meant. So you can relate something someone has told about themselves in a previous post to what they are saying next.
It won't be for everyone, some people won't like it, others will. I don't see much wrong with that. Some people obviously want to be able to share just a wee little more about themselves, for example to help someone with your own experience. It's not that I want to know what accounts someone has used in the past or whatever, because I've never used any kind of social media account and I'm not planning to either. People could still post milk here and talk about it, but also talk about other stuff off-site.
Just an idea. And it seems some people like the idea.
Will those be the medical records that Jaquie has sanctioned herself, or her complete records? Kek.
Also: if people have to call someone in an emergency, it's not much use in an actual
split-second-life-or-death-situation. The most important stuff HAS to be on your bracelet. If you have more info and the info you have is not immediately life-saving, there's the SOS Talisman that has a piece of folded up paper in there which can contain quite a lot of information. Conditions, vaccinations, the number of your GP and a partner/family member/friend, things to look out for (e.g. "joints dislocated easily, be careful with transport" or something like that) and it could even fit your medications and dosages. Although with the amount of diagnoses Jaq has, I'm not sure if THAT would fit on there.
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No shame in trying?!? Does anyone else find that an extremely odd statement to make?
Does hers have one? It looks like you can buy a piece to add the symbol.
It's interesting she's using them. I've seen other folks recommend them not for medical alert as much as non-verbal autistic children (esp runners) and older folks who have some sort of dementia. As in, not great for medical info but good for knowing if somebody is lost and who to call.
she didn't spell it right on her story.
Do we think AJ will get annoyed if Jan has GP? Will people start getting suspect? It's much too big of a coincidence that both these girls have the same illness. POTS is one thing, that's common now in women. But GP? Really?
I agree. People have also been telling her to get tested for EDS. Her being hispanic, chances are she has some degree of hypermobility so if she finds a quack, she might actually get that diagnosis. She has
been complaining about muscle pain for some time now, Just like Jaquie did at first. Jaq started out with muscular pain, which morphed into joint pain when she learned about EDS. Janiece might do the same. Since Janiece hasn't been eating for a while, her GES might even show a slightly slow motility. Especially if she is on meds for her diarrhea, which could slow down the stomach as well. So who knows, next they'll both have a diagnosis of narcolepsy, migraine, asthma, EDS, GP and POTS. Will MCAS be next for Janiece? Or would autism be first, so she can be mean and rude and blame it on her aspergers?
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Hmmmm. Interesting. I just found Julian’s tumblr. Appears to still be quite active. It’s full of sexual content, veganism, memes, occasional chronic illness, and other deep extraneous content. My point is, after looking at this I just wonder to myself.. how on earth did they become friends? They seem like individuals worlds apart. I mean he literally seems like someone Jaquie wouldn’t even understand or borderline think is inappropriate? I don’t know how else to say it. I’m wondering if she forced a friendship on him seeing as she has zero friends besides Wacko Janjan. I’m just very curious.
I feel for Christina. She wants it off her neck brace, but her fusion slipped so she had to have surgery again, on top of surgery for her knee.
I think AJ'S most recent brace kick is because of Christina.
"Don't separate from service dog."
What would a first repsonder do if they saw "dysautonomia?" Is that a helpful identifier?
Sage for medfagging
1) separate from service animal: helpful : yes and no. Doggy will likely remain protective but if you are having trouble breathing, bye bye doggy, hello emergency health care. Doggy is there to go get help or bring you a med or drag a magnet over your vagal stimulator. Emergency help is there to make sure you don't die from your resulting illness.
2) dysautonomia: helpful: yes: us medfags will know you'll come around if we put your feet up, and if you don't then maybe something else is really wrong, like you're having a real heart attack, or AJ developed a shrimp allergy because she actually eats so much shrimp and for once, had anaphylaxis instead of pretending to faint.
It really depends on what else is more important…in AJs case, not much is really intensive.
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Here's Christina's explanation on why she had it done.
Sage for OT.
A hospital near me (no where near Jan) has some rooms painted with Dr Seuss murals as it used to be part of a pediatric wing that got relocated out. They just don't always paint over murals since there's really no need.
Thanks for responding. I could see a first responder hesitating before doing much more beyond life-saving care if it wasn't clear what it was.
Loperamide is an opioid but it doesn't pass the blood brain barrier, so no high. Imo the FDA are being assholes by restricting it, addicts just use it to get through withdrawal without shitting their pants.
I wouldn't be surprised if these munchies are taking it by the handful and failing to disclose as much before GI tests. I'm sure it would mess up results significantly, and most people don't realize how effective a medication it really is. Although ironically, if you have something serious like IBD, it barely works.
It's not an opioid per se. It is an opioid-receptor agonist. It's primary action is to slow gastric motility.
It is currently in the news.
FDA wants to curb abuse of Imodium, 'the poor man's methadone'https://www.washingtonpost.com/news/to-your-health/wp/2018/01/30/fda-wants-to-curb-abuse-of-imodium-the-poor-mans-methadone/
As someone who used a SmartDriveMX+2 once, I can kinda understand her running into the wall. (Though it's still fucking hilarious.)
To start, you double tap the wheel , tap it again to set the speed, and then double tap to disengage. You can't make it stop immediately, so if you're approaching a barrier you'd have to disengage and slow down manually.
Not giving her credit, because she's had this chair for a while and should know how to work it better, but Smart Drive is a cruel mistress in tight spaces.
(sage for wheelchairfag)
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Your wish is my command.
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They just want to change the packaging. It can get you high, but only if you take a ton of it.
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how many instagram accounts does she have? Here's one that she abandoned in 2013, featuring service dog Osten and lil Judd https://www.instagram.com/jaquieblake/
All opioids are opioid receptor agonists, but not all agonists are opioids for the purposes of classification and thus scheduling.
Does she mean pass out and faint? Or pass out asleep?
Cause this is waaaay before she started angling for POTS.
I wonder. I've seen her describe narcolepsy sleep attacks like passing out. Literally ("it's basically passing out from narcolepsy" - paraphrasing here, don't remember the exact quote) but also explaining that when Harlow 'alerts' her, she know she is gonna have a sleep attack but can't stop it. So she finds a place where she can lie down and then waits for it to come. But that's not how narcolepsy works at all. If you keep active, you can often keep yourself awake. If you are sleepy and you're going to lie down, then yeah, you know you are going to fall asleep because you are hella sleepy. I always assumed her narcolepsy to be real because it is one of her first diagnoses and because I assumed they would not only do a sleep latency test (hook you up to an EEG for 24 hours and ask you to lie down at times X, Y and Z and time how long it takes for you to fall asleep) but also do an LP for for hypocretin. Someone in this thread (well, a previous incarnation of it) told me they don't always do an LP if someone comes in with symptoms of narcolepsy. And when I read her descriptions I really started to doubt it. I still don't know what to believe about her narcolepsy. But as I see it, she either is very bad at explaining her symptoms, is misinformed (e.g. someone told her there's no use fighting it and just have a nap when you need to and she misinterpreted it?), has a very atypical presentation, or doesn't have it.
As she describes her narcolepsy sleep attacks as 'passing out', your question is very valid. Also I'm not sure IF she even had her diagnosis yet by that point. I think
she did, because I seem to remember she got her first SD because both her epilepsy and her narcolepsy were so out of control? But that's the way Jaquie tells it, and she is notorious for rewriting her own (symptom) history.
From the early posts of her current Instagram, it doesn't seem like the "low blood pressure" symptoms she reported back then had her pass out. I don't remember her reporting it. It started with low BP and dizziness, not too long after she also mentioned heat intolerance, and it only changed to tachycardia after
she learned about POTS. I think
she talked about passing out before that from her "low BP", but I'm really not sure if that was as early as this post.
So I think at this point we cannot know. I will look back at her early IG posts (I'm the one who went through her and Harlow's IG a few threads ago and posted that long series that showed how certain stuff developed) to see if she is talking about passing out in the early days of H's account. Will post back when I find it.
(Sorry for my rambling, I always need a lot of words when I'm tired.)
I looked it up, and I think
she means "passing out" as having a sleep attack. Again: it doesn't make much sense to describe narcolepsy like that, but she did often refer to it that way like in >>414968
(links to my old post of her/Harlow IG). She only mentions dizzy spells, difficulty bending down and balance issues in relation to her low BP. And once that stairs are tricky when her "BP drops". I don't think she ever mentioned fainting due to low BP by then. That's in posts from december '15 and january '16, so it doesn't seem to make sense that she would have fainting spells in '13. We can't be entirely sure though, of course.
This sounds like classic textbook narcolepsy—to jaquie. Kek. As in she took the common misconception that most people with narcopelsy randomly fall asleep mid sentence, or when walking down the street etc. because that's what Jaquie does, she claims a diagnosis and fits her symptoms accordingly. She just didn't do her homework. Then when she did, suddenly when she passes out it's because she has narco with cataplexy
. But correct me if I'm wrong, with cataplexy you can't TELL you're about to have an attack so her saying she feels it coming and lays down…that's impossible. Also impossible, how much holding still and still staying awake she does. As anon pointed out, narcos figure out pretty quickly that to be quiet or not move a lot often means falling asleep. Hence many narcoleptics not being able to drive, or stay awake for an entire movie let alone a fucking marathon, while lying in bed or on the couch wrapped in blankets
which can make even NONnarcos have an unintended nap. And again, if she truly had narco she would NOT be 100 percent symptom free because it doesn't work that way. Pretending to leave your phone or mayo in the micro once in a while doesn't count either Jaquie.
different anon here but I have narcolepsy and if I didn't know anything about Jaquie I would say that sounds legit because I had a similar experience. The "passing out" she referred to when tubing would have to be cataplexy. But it's weird that she would say "passing out," since it only looks like you passed out to everyone else. You yourself are fully conscious. And that's a very severe form of cataplexy. If I had something like that, no way in hell would I put myself in a situation where I could fucking drown.
It's possible that she has narcolepsy but the rest of her conditions are bullshit. It's also possible that she read up on narcolepsy before she was diagnosed and knew what weird symptoms (collapsing when excited over mario kart) to pretend to have.
That would explain it. Another thing both Jaquie and Janiece don't get right about narcolepsy is how they say that they are always exhausted and naps makes them even worse. Janiece literally says she can't take naps because it makes her worse (because of REM intrusions) and Jaquie answered a comment on her IG ages ago where someone asked her if she felt better after a nap or worse that she is "always exhausted" and naps don't really make her feel better. But one of the defining characteristics of narcolepsy is that naps ARE refreshing, but only for a short amount of time. That's what distinguishes it from certain other conditions. They also don't seem to make a distinction between fatigue and sleepiness. Of course narcolepsy can cause fatigue as well, but diagnostically it's VERY important to make that distinction. To be honest especially Janieces symptoms sounds much more like chronic fatigue to me than narcolepsy.
Though what I still find odd if Jaquie doesn't
have it, is how many naps she takes during the day. Taking regular naps takes discipline, at least it does for me. Many people with fatigue due to whatever chronic illness don't feel like lying down because it makes them feel 80 years old. Also, it's difficult to time your naps and go asleep before
you collapse. Most people I know find it hard to find that balance and they just go on until they just can't. Sometimes they're even too tired to get themselves to bed. Jaquie takes a lot of naps during the day and if you aren't either very disciplined OR you just can't function without them, it's difficult to maintain that. Even most chronically ill people who technically should
take naps mostly can
go on without them for a while. It's only in the long run their fatigue and/or sleepiness catched up on them. Hence why it takes discipline to take naps every single day. I don't really see how and why she takes so many naps if she doesn't really need it. Naps are boring.
But that's just it: what she calls "passing out from narcolepsy" is NOT the cataplexy. I'll look up the screenshot where she talks about it. She mentions both cataplexy AND what she calls "REM attacks" (I think? I might misremember) and those
she refers to as "passing out". I'll look up the screenshots I posted before and repost them. I'll be a couple of minutes.
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And that's not the first time she refers to it that way. See the links I gave before in this post >>489154
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Might as well repost the entire image. If you want to see the complete series, start here:>>414965
She didn't haven an (open) Instagram or other social media account back then, and I don't think she ever talked about it. So unless I missed her explaining how she was diagnosed, we really have no way to know. It could
be in her "all about my chronic illnesses!" video, but I don't really fancy having to watch that one. I have seen most of it though and don't think she talks about how she was diagnosed. Just what the symptoms are.
This shit pisses me off because she's so manipulative and seeks out doctors that are shit or unethical and she ALWAYS gets her way and gets what she wants. Treatments, diagnosis, etc. she's not a good liar and doesn't have a "backstory" that makes sense to anyone with half a medical brain. HOW DOES SHE DO IT?
Sage for rage
Something happened just before or right around when she started vlogging that made her spiral even quicker, even if the relatives cancer was the initial trigger
. Good find anon! But I think we're still missing a crucial thing. Maybe it was Judd being deployed, or starting the vlogs and quickly becoming addicted to the asspats? Self loathing? Fight with mommy who thinks she's faking and suddenly she has allllll these new and worsening diagnosis? See mom, look how sooper sick I am, don't you feel bad now for doubting me?! Now, kiss my feet, do my bidding, jump through my hoops and you can be in my life again.
OK, I looked it up. And it is indeed in her "all about my complex bullshit disorder" video. She says she began having trouble staying awake in middle school (US fags, what age is that?) but what actually lead to her first sleep study was her excessive sleep walking. The initial sleep study showed signs of narcolepsy. After that, she had several more sleep studies and MSLT's (multiple sleep latency tests, where they measure how long it takes you to fall asleep during the day). After several studies, she was diagnosed with narcolepsy with cataplexy at age 15. She did not mention having had an LP.
What stands out to me about that is the "multiple" sleep studies and "multiple MSLT's". Why would she need more than one? Usually, one is enough to diagnose the problem. The only reason to repeat would be to assess how well a patients responds to treatment. And even then I'd think a MWT (maintenance of wakefullness test) would be more useful than a MSLT. I'm not sure if her first tests simply were not conclusive or if this is an early sign of doctor shopping, maybe on account of her parents since she was quite young.
Also good to know that apparently, she did not actually go to the doctor with symptoms of sleepiness and cataplexy. So even if the sleepiness might have been there, I think it's very possible the cataplexy was planted in her mind after doctors started asking if she ever experienced lack of muscle tone with certain emotions. We all know she has a LONG history of rewriting her own history and morphing her symptoms to textbook symptoms of a disorder only after
she learns about a given disorder. She might have been just tired or maybe have hypersomnia and changed that into typical symptoms of narcolepsy.
middle school (age 11 to 14ish) is a pretty common time for narcolepsy to start showing up, and MLSTs and the overnight test are what diagnoses it. The overnight rules out any other causes of sleepiness (like apnea) and the MLST looks for how long it takes to fall asleep and enter REM (which you shouldn't do at all in that short of a time period). You shouldn't need more than one unless the test is inconclusive or you just keep doing them until you get the result you want. It is possible to get a false positive if you know what you're doing.
I once went to a new doctor who wanted me to take the test again before he would treat me, but I refused because it's expensive and I would've had to go off my medication for several weeks, which would have made me unable to work.
I just watched the rest of the segment. She says that at the time of her diagnosis, she slept over 18 hours a day. That definitely
sounds more like either idiopathic hypersomnia with long sleep time (which is considered a subtype of IH) or chronic fatigue. Hypersonmia with long sleep time AND chronic fatigue is also common in depression, by the way.
She talks about how she used to have sleep attacks where she would just drop to the ground asleep without any warning. I have NEVER heard of anyone with narcolepsy having that kind of sleep attacks. If people are not sitting down or lying down they often either don't fall asleep OR their extreme sleepiness expresses itself in automatic behaviour, so they just go on with whatever they are doing and can seem fine to the casual observer, but they don't realize. It's sort of like sleep walking during the day. Jaquie seems to have an obsession with disorders that cause her to drop to the ground and/or completely incapacitate her out of nowhere: epilepsy, her special type of narcolepsy, fainting in POTS, severe allergic reactions, etc.
She explains things like putting mayo in the microwave or keys in the fridge as automatic behavior due to her narcolepsy. It seems a bit odd to me that someone who's narcolepsy is supposedly very well controlled (she shouldn't be driving if it wasn't) would still have this kind of automatic behavior. She does say that she only experiences automatic behavior when her narcolepsy is very bad. Well, if that is the case, then why was she driving in yesterdays vlog? She was driving on the very same day when she found her phone in the microwave. Fortunately we know she probably is either faking or exaggerating, but if that wasn't the case, then I would be very sorry for everyone who has loved ones in Florida.
That's because it is spot on, anon!
See, Jaquie thinks she has all this different disorders and her geneticist thinks he can tie most of them together because she is a genetic anomaly apparently. But you had the answer all along. There IS an explanation for ALL her disorders: CBD.
Interesting anon. We all assumed Jaq went NC because that's what Jaq said but–that means we're trusting Jaq isn't lying. Which prob isn't a smart choice. Something is very off in the mommy/daughter dynamic from both sides. They each seem to despise the other on a very deep instinctual level and it manifests as OTT way of interacting. Example, if Jaq asks (tells?) mommy to praise her for wiping her own butt or eating 1 bite of food, and mommy responds with a yes baby, or yes jack-a-Lynn, you did soooo good. It's like
the way people talk to little kids, giving them praise for a drawing that in your head you think "that fucking sucks little Timmy, you have zero talent". So you say good job and fake it. But not with the contempt and disdain Jaqs mom has when talking like that to Jaq. They despise each other but are super codependent. No empath anon, just had bpd mom and narcissist dad
I may be 100% wrong, but her mother doesn't strike me as MBP mom. I think she meant well, and her taking Jaquie to multiple doctors was more a product of a "everything for my little girl" mentality. And of course by the time Jaquie was 14/15, it's very possible Jaq already had mastered the art of manipulation to a reasonable degree.
I'm not sure why I don't think of her mom as being MBP, and probably most actual MBP moms (they are almost always female) don't give off an "MBP vibe" or they would've been caught earlier. But the way Jaquie interacts with her mom about her illnesses it's more Jaquie feeding the information (including opinions about doctors) to her mom. The conversations they have in the car seem very 'stiff' (can't find the right english word, but I guess you know what I mean) and unnatural. It's Jaquie prompting her mom: "what did you think of that doctor, mom? He was good, wasn't he?" Mom: "Yes, he was good." Her mother knows what Jaquie wants to hear and she is kind of following her lead. When it was revealed a few nights ago that Jaquie has basically set requirements for her mother to be allowed back into her life, those stiff conversations and the way she taught her mom parts of her medical care when she first came live with them made SO much more sense to me. She was teaching her mother what to do and how to act, and even what opinion to have about her doctors. She's experienced in training dogs, and it almost seems like she is handling her mom the same way. Prompting her, rewarding her if she gets it right and ignoring her when she doesn't.
O wait, I was typing >>489427
and somehow didn't read your post first. But we both interpreted certain aspects of their interaction the same way. That makes an even stronger case.
And mommy dearest goes along with it because she fears the repurcussions of stating her own (conflicting) opinion. One of the best books about interacting with someone with BPD is called I Hate You, Don't Leave Me. That's Jaq and her mom. Jaquie hates her but needs
her to validate her doctors and illnesses, and as an extra dose of OTT power play forces her to do so. Mommy hates Jaq but needs
her so she can play concerned mom and keep up the charade, and she fears jaquies rage if she does anything but
play along. They need each other because they're in an unbreakable cycle. Hence the NC for 6 months and diving back in because "conditions" were met.
A lot of this is armchair quarterbacking like panties-in-a-bunch anon rags on us for doing (but apparently same anon sees no problem in medical
armchair quarterbacking). Personality disorders (like many here suspect Jaq of having) are notorious for being scarily hard to see and pick up in people. Unless
you have had to live with/deal with fallout from one yourself. Then it's pretty easy to see, hence the armchair quarterbacking. Same for her medical stuff–if you yourself have what Jaq says you know she's full of shit, vs someone that doesn't have that condition and therefore prob doesn't know what symptoms of Jaqs don't make any sense. Sage for rambling
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Did Jaquie get a French manicure on the way home from the hospital? I couldn't figure out why her hands looked so different as she's waving them around. I don't remember her nails looking this nice.
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So THIS is the face she makes when talking about how she slept all day because her narco is really bad. Why does she always grin like the Cheshire Cat
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And her "alarmed because Jaquie weighs more than her" face
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Aaaand when she was reliving how she had symptoms of a stroke and it was scary. Notice the upturned corners on her mouth. Also known as a smile.
And she's getting morphine
???? If your tummy hurts that bad put the fucking camera down and act like an actual sick and in pain person. jeeeeeesus
They are just now
testing her thyroid? Seriously? That would account for some of the exhaustion, the cramping, the constipation, the stomach aches (from constipation), other levels being off. It only controls the entire body.
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I decided to Google that Prometheus test Janiece wants to do so badly. One of the first hits was this interesting discussion I found on this website: http://www.crohnsforum.com/showthread.php?t=33535
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Besides the fact that the test is apparently not very reliable (which is interesting enough on it's own) another interesting point is raised in reply #15 where it is mentioned that IBS can cause microscopic inflammation. Now I was almost sure I had heard that somewhere and have always thought Janieces symptoms were most likely IBS, but I was not sure when or where I heard that so had not mentioned it. Now Janiece has had clear upper and lower scopes and even had two colonoscopies in a few months time. All clear. Then the pillcam showed 'minor inflammation', which is the reason her doc wants to do the Prometheus test. But apparently, that finding can be 100% consistent with IBS as well. As are pretty much all her other GI symptoms. Hm…
(Argh, I keep messing up this post. Hope this one is right, finally.)
Interesting in todays vlog regarding her 'not being able to eat' is that Paul mentions that she hardly ate anything yesterday. She only ate her small standardized meal for the GES (not so small, imho) and had a snack in the afternoon. What was worrying according to Paul is she now experienced that if she hardly eats, she doesn't have stomach pain. So that makes it harder for her to eat more, because she now knows she is in more pain if she eats more.
But.. both have been telling us for WEEKS that she was hardly eating anything. She had lost a lot of weight and was malnourished etc. because she was hardly eating
. So how can she only now discover that if she eats less, she doesn't have that much pain? That doesn't make any sense.
Top kek anon, that is a pretty funny picture with lifting the wheel chair down the step, getting into it and zooming away. I wonder if having Jaq as an neighbor is a giant head scratcher. Like people that are OTT limping because of a "hurt" ankle and limp on the left one day and the right the next. We may never see much of her day and the shit she edits out but just imagine
the kinds of crap her neighbors must see glancing out their window or passing her on the sidewalk or parking lot
And after she pushed her Toradol, the pain was a little
better, and she was able to take a shower. I dunno, but for most chronically ill or disabled people, taking a shower is VERY intensive. We also know she doesn't keep her special shower chair in the bathroom but in her 'hospital room'. So not only did she have to undress herself, wash herself, step into the shower/unto the shower chair and keep her arms above her head so she could wash her hair and then blow dry her hair (by thirty seconds at a time, kek), dry herself, get dressed and get into bed, but she also had to drag that extra wide shower chair to the bathroom and put in IN the bath so she could transfer herself onto it. I mean, Judd wasn't home, so she had to do it herself. But she was in SO much pain, y'all.
Also: she was supposed to go for her special K the day before yesterday, but she had to cancel because she just couldn't do it. Yet the day immediately after that, she was able to go out with Judd. So she couldn't lie into a hospital bed two days ago because she is not yet recovered, but yesterday she could go out and today she could go outside to the dag park and train with Harlow? O. OK.
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Janiece apparently is NOT on morphine. I assumed because she had a band with "morphine" printed on it that it meant she was on morphine, but apparently it means they shouldn't give it to her.
That still leaves the question what they ARE giving her. She has said multiple times that they are giving her 'medication' for her abdominal pain, but she never specified what she is taking for it.
Another thing, and I have mentioned it before but I keep wondering about this: why the HELL do they keep giving her antibiotics for her diarrhea? Most people get diarrhea if they are on antibiotics, even if they had no GI problems whatsoever before. During her last stay they also gave her steroids, which made NO sense. Maybe it would make sense if they gave it to her now because the pill cam showed minor inflammation so I can imagine them giving her steriods as a hail Mary pass, but antibiotics? AGAIN?
The only reason I could see them giving her antibiotics would be if her white blood cells are elevated from an infection/autoimmune problem but they should have ended them a while ago, especially if they have her on steroids now as the steroids would help bring down the inflamation. Antibiotics should only be taken for a short amount of time if you have GI problems and them taking her off would also most likely help with her appetite, but no she HAD to try appetite enhancing drugs that didnt even end up working.
sage for medfagging
She was only on steroids for 10 days, from when she was discharged from hospital just before Christmas.
If they suspect an autoimmune disease, they’ll trial 2-4 weeks.
I sincerely wonder how she ever got it approved. It's a standard treatment for a condition I have but every insurance has different approval guidelines and tend to be strict with it.
Hopefully she won't hear about the new IM IVIG. It's supposed to be great :(
I think it's so strange that they didn't consider like putting Harlow in a doggie day care or ya know, paying somebody to walk her, during that hospital time. Just like…be responsible if you have a dog that has that much excess energy.
She claims her two accomplishments for yesterday (today's vlog) are going to the dog park and finding a new setting on her camera, but if she has a vlog out tomorrow then she's obviously lying. We talk about it all the time but it's like she doesn't want anybody to consider the vlog editing time work that she does but it clearly takes time and effort to put the videos together. It's such shit.
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Jaquie's SWF seems to have moved on from copying Jaquie to copying herself … two different Instagrams from two different days here
Long time lurker, first time poster, so I hope I'm doing this right. Jaquie said in her latest post that 'fainting, chronic pain, joint dislocations are much more manageable' thanks to her wheelchair.
Has Jaqui actually ever posted about particular joint dislocations apart from mentioning it generally? For someone with supposedly such chronic/extensive EDS, in the 6 months or so I've been following her 'antics', i cannot remember her posting about specific joint dislocations, going to emergency for relocations/reductions, taping her joints to stabilise them, etc. Nor of course does she engage in intensive physiotherapy, nor has she had prolotherapy, which is only available if there is no engagement from ligaments. Ie, only for people severely affected.
I often think it would be great to have a double column posted in this thread of a 'fact versus fiction' of Jaqui's adjustable adventure claims. There is so many layers to her stories, they are ever changing. But if you see them compiled simply, the inconsistencies are easily evident, particularly to those who are newly suspicious of her claims.
Ie 'Claim' Has severe anaphylaxis. Reality: can speak during attacks, therefore no airway involvement (hoarse voice/voice changes are a huge sign), no rash, no swelling, no ICU admissions, rarely needs epi pens.
Claim/ severe gastroparesis requiring feeding tube.
Reality; Gastric Emptying Study showed minimal delayed emptying, aka no severe gastroparesis. Mild at best. Able to eat many non friendly Gp Solids. Only 'unable' to eat solids if tube isn't working. Never mentions vomiting. Menchies etc.
Anyway just an idea, once you start to compile it up and contrast it like that, it's actually pretty mind blowing how dependent she is on complex details and layering her story.
Saged for newfangled/non contribution.
Thank you! I've tried repeatedly but can't work out how to reply to comments. Sorry for being a newfangled, tips please to get it right?
It was actually a friend who first told me Jaquie was the worst when we were discussing munchies.
It was quickly evident from being A) medically literate and B) living with similar illnesses, that things just didnt add up.
For me, the biggest red flat is when people discuss 'firing' their doctors. I've always found that to be a classic munchie behaviour and term. The average chronically Ill person is so desperate for help, these will continue to see a medical professional if they are awful/uncaring, because we usually have no alternative, doubt ourselves etc. Doubting yourself I think is one of the biggest things that separates a munchie from non munchies. Every sick non munchie person has asked themselves 'what if this is in my head? What if I'm going crazy?''. A munhje never asks themselves that.
You put up with shitty treatment from doctors because you have waited usually months to see them, and don't have other options. And you're desperate. That medical contact is your lifeline, something you may have waited 6 awful months and paid $300 for. You can't 'fire them' because you're too unwell, and too desperate.
A munchie can 'fire' a doctor because that doctor represents nothing more to them than another tool in their toolkit. If it doesn't work? You can just get rid of it, as there are no consequences, as opposed to if you're sick and that means you're now totally alone.
Sorry for the non contribution/ramble.
I think the biggest 'this is bullshit' sign for me was Jaquie's so called anaphylaxis. It's laughable.
Medfagfing but she must be the only anaphylaxis patient on the planet who doesn't experience impending doom, vocal changes, uncontrolled diarrhoea, loss of consciousness, and gets better WITHOUT adrenaline.
Just click o the post number of the comment you're responding to and the number will appear in the comment box.
Check out the usage tips, specifically number because this probably wasn't very helpful. https://lolcow.farm/info
I've always found the "firing" thing weird too! Insurance doesn't always cover a multitude of doctors either, so sometimes there is seriously no other options.
I'm glad you've seen the light like many of us have.
Maybe I’m a munchie but I don’t see the problem with ceasing to see a doctor/not adding them to your “team”? I mean anybody whose chronically ill knows that not every doctor fits for every patient whether that be because they don’t know about their conditions enough, aren’t comfortable with them, or personalities don’t match.
I mean I do understand there’s a line to be drawn here but I feel like saying they only munchies “fire” doctors paints and unfair image to people who DO have options. If you can see a different doctor and the one you’ve seen doesn’t fit well with you, there’s no harm seeing a different doctors.
I do think Jaquie takes it to a whole new level - it seems like she fires doctors just for not giving her the treatment she wants. That’s definitely munchie behavior. I don’t think non-munchies normally go into a doctor in the first place gunning for a particular treatment plan. Why? Because most non-munchies trust their doctors opinion since they’re the ones that went to medical school.
There’s a big difference between searching for a doctor you mesh well with, and doctor-shopping for the provider that will not only prescribe the treatments you want, but also either diagnose you with, or honor another diagnosis of, illnesses that you definitely don’t have. Munchies tend to ‘fire’ doctors who refuse to acknowledge a wrong diagnosis or don’t go along with totally unnecessary and inappropriate treatments. It’s not the doctor they dislike, it’s that the doctor refuses to play along. Jaquie saw some of the top doctors in the country, but they wouldn’t diagnosis her with the EDS, POTS, and GP she clearly doesn’t have, so she left to find someone who would, despite her testing negative for all of those.
>>489986>>Has Jaqui actually ever posted about particular joint dislocations apart from mentioning it generally?
When one of her doctors (the neurologist she went to for her migraines, to be precise) told her she had some hypermobile joints and therefore had EDS (I think we all know that having some hypermobile joints definitely does NOT equal having EDS) someone told her in the comments about the symptoms of EDS. Dislocations, for one thing. She answered then that she did 'not think' she had ever had a dislocation or a subluxation of a joint.
But over time, the hip pain she sometimes talked about slowly morphed into 'a feeling of being out of place' and a 'popping and clicking sensation'. She had never
mentioned that before. After a while, she changed that into 'hip subluxations'. She would sometimes say things like 'my hip subluxed a few days ago, and it's still causing pain today'. But then if you went back to her previous posts of that week, she never mentioned having a sublux on the day it supposedly happened. There's only one
time I can remember where she talked about a sublux on the day it - supposedly - happened. That was maybe two or three months(?) ago. She never talked about how it happened, what she was doing when it happened, if she had to put it back herself or if it just popped back by itself - nada. Just 'my hip just subluxed so I am in pain'. She also mentioned one
time that her ribs had slipped out of place and her physio had to put it back. But strangely, she pointed to her neck when she was talking about that. So who knows. In her "all about my chronic illnesses!" video she says that her most problematic
areas are her hips that sublux, her ribs that dislocate and her neck where the vertebrae often slip out of place. I'm not buying any of it.
As you say, she NEVER talks about having actual dislocations. I'd say the first time her hip actually subluxed would have been a traumatic experience. A hip, as many of us undoubtedly know, is a pretty stable joint of itself simply because the socket is pretty deep. Most EDSers who may often have dislocations of shoulders, wrists and kneecaps will never
experience a hip dislocation or even a hip sublux for this very reason. And while it is easy to pop a finger, jaw or even a kneecap back in place once you know how, a hip is not so easy. Of course with a subluxation a joint sometimes may pop back by itself or it will do so after you wiggle a bit around or you change your position, but Jaquie never talks about this. She just tells us that she had a hip sublux and that's it. And unless someone also has developmental hip dysplasia (immature hip) it is extremely
unlikely that EDS would affect her hips to the point of causing subluxations while she has never had a dislocation or even a subluxation of one of the joints that's much more prone to instability like a shoulder or a kneecap.
My theory is that maybe she has a snapping hip, but it's probably not even that. Maybe
her hip clicks or pops now and then and she thinks it's a sublux, but to be honest I think she knows what she is doing and she knows it's not a true sublux. Or she just doesn't care what it is and it suits her that the click - or whatever she is experiencing - fits her story.
She also said when she first got her wheelchair and she was using it without power assist that it 'gave her the feeling like her shoulders were going to sublux'. Whatever that might be.
The funny thing is that with EDS, it's very hard to actually feel when you're joints are going to sublux. The feeling your shoulder is going to sublux is caused by the ligaments being stretched to a certain point. But with shoulder instability in EDS, the ligaments will just keep stretching and won't give any proprioceptive feedback that the joint is going too far. Unless you have shoulder instability in EDS and specifically trained for this in PT, having the 'feeling' your shoulder is going to sublux more often than not means that your shoulder is not extremely lax. It may be instable due to other reasons, but you probably won't have a shoulder joint that can easily be pushed out of socket in almost any direction.
She IS persuing bracing for her 'instable joints', but those are prescribed by her pain management doctor. Putting aside how fundamentally STUPID it would be to use braces simply for pain relief if you have EDS, she clearly has no real joint instability. She never showed us, talked about it (in a way that made sense), had physio for it, or did anything to stabilise a joint or prevent them from dislocating in any way whatsoever. She also never went to the ER for a dislocation or had to use a sling/brace/tape temporarily after a dislocation or a bad sublux. Instead, she is getting braces for both knees, hips, wrists and for her neck PLUS AFO's, all at the same time. That's not how it works EVER in EDS, of course. If a brace is even needed, most of the time it will be fitted on one joint at the time that either keeps subluxing or had a traumatic dislocation so needs some rests. You don't just go to a clinic to get a zillion braces for all of your joints.
Jaquie of course, doesn't know that. She doesn't know how EDS works and what it does, so she just does what she
thinks a person with EDS would do. She probably has seen EDS patients with braces and asked her doctor about them. Her doctor is the one who prescribes her special K and routinely injects her joints with Toradol so we already know he is an idiot, so he agreed to prescribe them. And we get to see RoboJaq shortly.
I'm not a medfag, but first of all tube feeding most of the time doesn't give you all you fluid requirements. It depends a bit on the rate and the type of formula. You could
get it from formula alone, but you'd need a formula that's less calorific. Less calories per ml equals more fluid per ml. Jaquie's formula is a 1.5 (meaning 1.5 calorie per ml) so if she would be 100% dependent on that she'd need about (just a rough estimate) 600-700 ml per day of fluids with that. Even Jaquie acknowledges she's not 100% dependent though, so she gets less formula and would need more fluids.
But that's not even the reason she has infusions. She got saline infusions before she started angling for a feeding tube. She has infusions because of her POTS, which is a treatment that's hardly ever given outside the US and it should be only reserved for the most severe cases. For those severe cases though, it can greatly help with symptoms of tachycardia and low BP, especially if someone has hypovolemia (low blood volume) because it not only increases fluids and gives extra salt, but because it is infused directly into the blood stream it also boosts blood volume.
Patients with POTS should drink more (sometimes a LOT) more than what's recommended for most healthy patients and most are also on a high-sodium diet. Say she would need to drink 3.5 liter a day for her POTS (I don't know what's generally recommended, it's an educated guess) and she gets like 1 from her formula (she would get more formula, but it doesn't cound all as fluids) she would need to drink 2.5 liter extra water (or gatorade, or another elektrolyte mix) a day. Most patients would be able to manage that easily. Even those with GP, because fluids generally go through the stomach quite fast even with a very limited motility. But Jaquie being Jaquie, wanted the most OTT treatment there is for POTS so she looks more sick. The story on how she got to have those infusions is quite funny, too. I'll look it up for you and post the link to it.
Link to the series on how she got her precious IV fluids: >>407608
Brochure anon (or other anons who sometimes start new threads): I know I am promoting my own work here and it's not the first time either, but is it an idea to include links to my series (and other insightful ones) in the header of the next thread(s)? If everyone hates the fact that I keep referring to my own series just tell me, but it WAS a lot of work and it DOES give a lot of information. It might be useful both for people new to the thread to see what we have uncovered until now, and it also might prevent people from spending hours of work that's already been done. If I remember correctly, I made three series of postings from going through her and Harlow's IG.
Very true. The ONLY thing Jaquie has ever shown us that could be considered hypermobile is that she can touch her thumb to her wrist. And although I don't think it's a good idea to show of your party tricks if you have EDS, most patients have a lot of things that they could show without hurting themselves. Hyperextension of elbows and knees, skin stretchiness, or subluxations that would happen all the time anyway. If e.g. you have a shoulder that subluxes with pretty much every movement, it doesn't hurt your shoulder to put on a spagetti top one day and aim the camera to it. And if she truly had such severe delayed healing, she could simply show us any scars she has (like from her port surgery) to show the widening and either atrophic or hypertrophic nature of the scar. She never even showed us some bruises.
We HAVE however, seen a lot of proof that she does NOT have EDS or in any case that her symptoms simply cannot be as severe as she says they are.
-She has filmed herself sitting cross legged on the floor many times
while telling us how she just subluxed her hip recently and it now hurts so much.
-She has shown us how she can lift her arms far above her head without discomfort. (For most EDSers, if they could even do that, that would be a perfect opportunity to show how they reduce their shoulders after they dislocated.)
-She has many
pictures and videos of herself kneeling on a hard surface. But she needs
those knee braces, y'all.
-There's video's of her doing a 'tug war' with Harlow. Uncontrolled tugging could easily dislocate wrists, elbows and shoulders.
-Her wheelchair crash at the aquarium is a good one: the way she caught herself without any joint dislocations or other damage.
There's more, of course. These were just the things I could think of from the top of my head. Another nice one disproving hip, back AND neck problems would be her "all about my complex bullshit disorder" video, where she was sitting on the floor cross legged for over an hour (even if she did that in parts) AND had her infusion backpack on her back the whole time
. Wouldn't you want to put that thing down on the floor if you had shoulder, neck or back problems?
And there's SO much more..
Erm.. a bit premature, isn't it? They are still waiting on that Prometheus test, so it's not like they have stopped looking for what could be wrong.
Also, just the other day she was SO happy that the docs had told her they wouldn't discharge her this time until they had found what's wrong. (Dunno how long it takes for that Prometheus test to come back, but if she is stable I can't see a reason why she couldn't wait for results at home. They can do blood tests every week and/or have her follow up with her primary if they are worried.)
And again, we can see beeper numbers and the name of that doctor she said she didn't like. I'm sure he'd be thrilled if he knew about that.
I like how she didn't even adress the fact that her GES came back normal. Not in yesterdays vlog and not in todays vlog either. Yesterday Paul told us it was normal and Janiece never even acknowledged it. I bet she was hoping for it to show gastroparesis. She even humble bragged how hard it was to eat the radioactive meal and how something just had
to be wrong for her to struggle so much to finish it. I can't figure out why they indulged her and did the test instead of just telling her that 1. her symptoms don't fit gastroparesis and 2. the pill cam would have shown it and it didn't.
She clearly is taking a LOT of notes from Jaquie. She also predicts her next health crisis, with is VERY suspicious. As soon as she is done with her meds, she'll have her next crisis. Never mind that they are working to correct her electrolyte levels and that they'll probably prescribe her Ensure at home as well: she will
hit 'rock bottom' (her words, not mine) as soon as her treatment course is done and she will be back at the hospital. Of course, if she predicts it like that, it'll probably happen. Only next time her levels will probably be normal, because it's pretty much impossible to loose so much electrolytes in a few days time.
O, and both her and Paul STILL don't know the difference between electrolytes and vitamins. It was annoying the first few times, but it gets more annoying every time they keep repeating it.
Paul definitely has some sort of saviour-complex. You'd think with him having an actual
chronic illness that can be quite serious, he'd be a bit more down to earth about Janieces problems. But no. Crohns per se it not such a big deal says Paul, but if you throw vestibular migraine, narcolepsy and POTS in the mix it is all SO much more complex. No it is not. Maybe
there is one or two meds that interact or have side effects that affect someone with those conditions more, but what the FUCK has her vestibular migraine to do with her her GI tract? How is diarrhea more complex to manage because of narcolepsy? I don't see it. The sense of entitlement is enormous with this one. She thinks she is the only one who sees a GI and has other things
wrong with her as well. She has so many
conditions that it makes her case extremely complex
. So she needs to find a better doctor because she thinks her GI doesn't want to deal with her because she is too complex because of all of her
other conditions. Urgh. Do they REALLY think that she is so special? How many conditions and chronic illnesses do they think the average geriatric patient has, for example? Comorbidity is EXTREMELY common. So is migraine and POTS, by the way. AND IBS. But if Janiece has it, it's sooo special.
Sage for Janiece-rage, but it's getting SO annoying. She is NOT a complex case. In fact, there is hardly anything wrong with her. I am willing to acknowledge that there is a chance that her GI problems turn out to have an actual medical cause, but that STILL doesn't make her special. Most people don't even mention
non-relevant conditions to their specialists, because they are specialists
and they deal with a specific part of your medical problems. But Janiece of course needs a GI that takes her vestibular migraines, her POTS and her narcolepsy into account. And just WHAT does she think a GI can do with that
Argh. I have to stop this post before I break my keyboard.
That was my first guess but then she went on to say she had a specialized EEG at Mayo and that's where they discovered that she did
have epilepsy but because of how deep it was in the brain a normal EEG doesn't pick up on it. And now I don't know what to think of it anymore.
Maybe any medfags can weigh in on it? It's in her "All about my chronic illnesses" video and fortunately for us she created a time index so there's no need to watch the hour-plus video. Any part of it is hard to watch though, just for the fact that she sounds and looks awfully rehearsed. Like an actress doing a parody on bad acting.
I don't know what happened, but I agree that it seems something has changed. It has been going on for longer, though. After her Instagram hiatus, she dialed down the hashtag abuse by quite a lot.
be a coincidence that both of her post surgery-hiatus vlog were much less medical and more about things she can
do, but it could also mean something has happened. Maybe her fall-out with Julian has something to do with it? In his IG post that I'm almost sure was about that, he talked about taking a step back and not letting illness define your life, not equating being ill with your identity, etc. Of course we don't know what happened, but even if there hasn't been an actual confrontation between those two, it's very likely that she knows what's up and she still reads his Instagram posts.
I guess we'll just have to wait and see if she actually is trying to change her channel or if it's just a temporary thing or a coincidence after all.
Brochure Anon here.
I think that’s a good idea. Having some references to previous projects like that would be a good thing to have in the description do people can easily find them!
I've never understood the fuss about gloves. Wearing gloves when handling food is generally for whoever is consuming
the food not eating it. And in the case of food service you're supposed to wash your hands before
putting on gloves because you have to touch them to put them on. Dirty hands manipulating clean gloves means dirty gloves.
How is someone more safe from salmonella if they accidentally rub their eye with a raw chicken finger, whether said finger has a glove on or not? Her wearing gloves or Jaquie not makes zero difference unless they have an open wound on their hand somewhere. They just have to wash their hands thoroughly when they're done. Not WKing.
Sorry I meant "consuming the food, not preparing
Not awake yet.
From my experience wearing gloves does make you less likely to touch your face or your hair because touching your face with a gloved hand doesn't feel anything like just touching your face regularly. You're much less likely to do it unconsciously. Or at least I am.
Also you know Jaquie doesn't have a nail brush in her kitchen to get the raw meat juices out from under her nails so for that alone, wearing gloves would be beneficial.
But most of all, she needs to tie her stringy, fried hair back when she preps raw meals because her hair is always falling in the raw chicken.
Yeah, I was surprised at that! And for once I could understand her a bit. I know people who are afraid of cats (I myself love
them) and I could imagine how being tired and all she just did not know what to do. She actually seemed a bit autistic in that clip. The calling Judd was pointless though; he was at work, what could he do? And if she actually had some sort of panic attack because of her fear of cats on top of fatigue and autism, I do not think she would be able to go on filming. But the way she told herself "it's just a cat" and "it actually kind of sweet" was very out of character. I mean, she vastly overreacted of course, but still the way she dealt with it was.. almost sweet? Weird
don't know what to think of it.
Question on the panhypogammaglobulinemia - Isn't this confirmed by labs? Do they have to take labs continuously to see if she still needs it?
Do we know what medications she takes for her epilepsy? I found a study that relates diphenylhydantoin to causing the panhypoblahblahblah in HIV positive patients. Could Jaq be ODing on the epilepsy meds to cause that?
She stopped her epilepsy meds about.. a year ago or so? But her diagnosis of panhypothingy was also a while ago. And yes, you'd think they would monitor it to see if her numbers actually increase from taking the IVIG.
I saw or read in an older post/vlog of hers (sorry, really don't remember where) a while ago that she mentioned one of the lab values that she has been saying is too low was borderline normal (so on the low side) instead of too low like she has been saying for a long time. I don't remember which value that was and where I saw it, but if I ever remember or stumble on it again, I will post it here.
He *could"have come: "ma'am, we hear there's a domestic disturbance here?"
Thanks, anon. That's good info.
If it's borderline normal, you'd think they would just monitor instead of wasting an expensive treatment that uses "a thousand" donors to get a single dose.
I mean, she's so disabled and all and if the cat could have triggered
an anaphylaxis episode….isn't the cop motto to protect and serve?
It was discussed a few threads back and if I remember correctly it was decided it was a BS diagnosis. I'll see if I can find anything.
The fact that she gets IVIG makes me rage. CIDP patients get denied it left and right leading to a significant worsening of symptoms.
I wasn't sure about this particular drug either but the shaking vs rolling around gently can mean nothing or be bad. Most definitely the sticker (on there for a reason) should prob be the LAST thing to come off, especially since she jammed her grubby paw down onto it without
the sticker to push the cap down. Kek with no gloves on and lottsa hair touching.
I'm catching up and watching and it's like she doesn't pay attention or learn at all. She again calls it saline after the nurse told her it was sterile water, corrects herself but says "sterile water or whatever".
I also love how she says that "missing one day of nutrition" won't matter but she stopped vlogging for like 2 days after her tube kinked for like…one day.
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um, is she trying to bend her fucking needle? why isn't she stabilizing the bottle with her other hand?
also, when I fill syringes, you start with air in the syringe, push it into the bottle and the pull in the liquid while pulling the needle back so you avoid adding any extra air.
How bitchy she is being about doctors is wild. We also see that Jacquie has been coaching her and encouraging her to fire her GI. It also seems like Jan is actually getting a lot of doctors attention considering it seems like every single symptom she has can be attributed to not eating right…and she admits to not eating right. I'd love to see a doctor demand she keep a food journal or similar.
Also, Jan claims scary movies make her nacrolepsy worse. Can anybody confirm if that makes sense? Does she mean cataplexy? Also, should Paul really be doing his own maintenance on hospital doors??
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Can this cat be our new Savior? El Gordito Gato?
IDK, but that cat is just adorable!
sage for OT
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I stand corrected I found the post.
(Talking about just Jan here. Jaqs cataplexy in theory could be triggered
by scary movies but anons question I was answering was about Jan and her scary movie intolerance)
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Janjan looks like she's got the typical "villain plotting their next move" look here. She was talking about how her health will "definitely decline" once she leaves the hospital. Me thinks it's because you're a munchie.
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Two great comments in a row
I saw that comment. It has been brought up before, as well. Even during her last hospital stay, Paul supposedly asked the doctor if maybe it was a good idea for Jan to do home infusions and the doctor thought it was a good idea
. That doctor is either an alumnus of the Jaqueline Blake school of malpractice, or Paul is lying/twisting the truth. Jaquie doing saline infusions for orthostatic intolerance is bad enough, but if they give Janiece home infusions for episodic diarrhea of unknown cause that probably will turn out to be IBS, I will loose my shit. For some reason, Janiece annoys me SO much more than Jaquie does, which is really saying a lot. I can't really put my finger on it, but I think it's because she doesn't even try to hide her attitude of entitlement and she is just straight up being a bitch to her caregivers. I don't know. Maybe the fact that her moves are so obvious will finally prompt her doctors to call in a psychiatrist. If they did that to Jaquie she would probably tell her doctors she is keeping an open mind
or whatever and try to manipulate the psychiatrist to feel sorry for her poor, sick self, but Janiece I think is far more likely to just throw a tantrum and take her shit to another hospital. We'll just have to wait and see though. They'll probably finally kick her ass to the curb, but of course per her own prediction, she'll be back within a week or so. Maybe go to the ER of another hospital in hopes of finding "a doc willing to take on my case", which roughly translates as "an idiot doctor willing to do everything I ask". Maybe she'll ask for a repeat GES and try to manipulate the outcome. (And please
don't post here HOW this kind of stuff could be done, because if
Jaquie is reading this, I'm sure she would tell Janiece. Just to 'steer her doctors in the right direction', of course. Ugh.)
Perfect find, anon!
Though to be honest, finding the right still in Janieces video's is not that hard. She really
looks and sounds like a villain when she is talking about her health. Her facial expression whenever she is talking about things like weight loss, other symptoms and how other people worry about her is pretty much always that of a sarcastig villain plotting a move. "I have lost sooo much weight, that is really not
good" <- insert maniacal laugh. If someone who didn't know her would watch her vlogs without sound, I'm sure they could never guess what she was talking about.
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Janiece doesn't think she is 'bad enough' for an NG tube. But she is 'thinking about' home infusions.
I just can't. Is she really this stupid, or does she think infusions are more glamorous than a tube? Or what?
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Comment from Janiece's most recent vlog.
She was too special for Mayo? 'Sadly', of course. Everything is always 'sadly' with Janiece, even when it's not sad at all.
Does anyone know/remember when she went to Mayo? It obviously wasn't for her poop problems. Maybe her narcolepsy? POTS? I'm curious. They probably told her she was fine, so it 'wasn't for her'. Like it's a matter of taste or personal preference which doctors are good.
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..and finally a common sense comment. Up until now, everyone is telling her how horrible her doctor is for wanting to discharge her and how she should chain herself to the bed and ask for home infusions and get tested for MALS and whatever.
And just to be clear: she never actually told us clearly what her symptoms were. Her account is all over the place: from diarrhea to constipation in one day, thinking she can't digest her pills because she pooped out a shell, 'horrible pains', but able to eat a dole whip the next day (although that was a while ago) a bland diet that she was 'doing well on' but stopped two days later because they went out to eat and it 'would be worth it', not being able to eat at home yet able to when in hospital, going in with other symptoms then admitted for others.. it's a holy mess of symptoms and frankly it's not a surprise her doctors can't make heads or tails of it.
I really believe this is the beginning of the end for Janice. She was quite literally almost spitting with anger whilst explaining that she's going home and the doctors reasoning.
In the video today she doesn't say 'I just hope I don't get worse'. She says, verbatim 'so it's gonna happen again, my health is going to get bad very quickly, and who knows what, WHEN the next time I come in, how bad am I gonna be then?'. She says it in the time of a challenge. She doesn't say 'if I come back'. It's 'when'.
She's also very upset that her Doctor has given her perfectly sound, reasonable advice of following up with her usual treating team, and increasing her exercise and mobility. A brilliant idea given she supposedly has POTS and is currently very de conditioned.
In summary of Janiece; She went to hospital due to 'severe diarrhoea' leading to 'claw hand' from 'low potassium'.
Doctors have performed a Gastric Emptying Study at her request and it was negative.
Her presenting complaint of diarrhoea and claw hand has stopped.
No diarrhoea. No claw hand.
She wishes to be kept in because, despite saying she was now constipated, she could get diarrhoea again. So they should be keeping her admitted at a cost of lord knows how much, and taking up a bed that could be used by seriously unwell patients, inn CAEE she gets sick again.
She's fallen down the rabbit hole. My bet is she will next be seeing Jaquie's doctors.
I suspected that was not sure because she also seemed to like the NP. Remember has last admission? Coincidentally, that was shortly after she tried to get her GI to see her sooner b/c she pooped out some empty pill shells, and he wouldn't.
Disclaimer: I didn't see her new vlog yet, so don't know what she said exactly.
He's almost worse than she is. I'm dissapointed in him. At first I thought he was the reasonable out of the four (Jaquie, Judd, Janiece and Paul). He seemed a pretty down-to-earth guy. He was the one with a real
chronic illness living his life, working, etc. He also tried to feed Janiece a FODMAP diet and helped her stick to it. But theeenn.. I don't know what happened, but he decided he had to be her saviour or prince charming or whatever and he made everything ten times worse. He 'explains' Janiece to her doctors and to her viewers, tells them 100X that they have to take ALL
her diseases into account, and is overall doing more damage than good. Whenever Janiece tries to explain her symptoms or why she is worried, Paul takes the camera and explains is for her. She doesn't mind of course 'cause she's not very good with words and likes it if other people are worried, but he is just blinded by whatever it is he is suffering from. The difference is that I think that he would be able to
see what he is doing, but he just doensn't want to. He likes his the role he is playing right now: being the supporting husband and advocate for his sick wife with and almost MBP-like quality to it.
I'm starting to think this is turning into "The Paul Show". He's in the forefront of most of the recent videos, pleading Janiece's case with his supposed vast medical knowledge (yet he also doesn't know the difference between a vitamin and an electrolyte). All he needs is the hero costume with cape. Neither of them see that she hasn't followed any of the previous recommendations–bland diet, Gatorade, more oral fluids, butt PT, etc, which labels her a noncompliant patient. The docs solved her current problems, gave her supplements to take and stabilized her lab values but P & J have no insight that if she is consistently noncompliant with recommendations, that is what makes her hard to treat—not because "the case is so difficult". If she can lay in a hospital bed and watch children's cartoons and Disney movies incessantly and vlog, it gives the medical staff a vibe of "I'm a child", what with the pouting alternating with the foolish ear-to-ear cheesy grin and the "blah-face-droopy eyes-mumbling-talk". Also, there is a big difference between asking a doctor if this or that might help versus telling a doctor what you want. Janiece is just disappointed she couldn't get a list of diagnoses to compete in the Jaquie Show. And Paul is disappointed he won't have any reason to play hero. They both really are intolerable to watch. Face it, she's just not chronically ill—-and needs to follow the regimen. Quit coddling her Paul—then you WILL be the hero.
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Yessss!! And a win to the commenter!
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That cat thing seemed so very staged to me. Jaq and her bad acting. She probably borrowed the cat from a neighbor. Kek
But seriously, some YTers have been caught doing pranks and whatnot where it came out they paid actors to be involved or the person being pranked plays along for the vlog but in real life was in on it. There is absolutely nothing that says some of jaquies antics arent in the same umbrella. She could be "running her infusions" and pushing IV meds through her port that used to be real but someone along the way made her have it removed so now she slaps a tagaderm on there, feeds the toob somewhere else and "infuses". Would anyone be able to tell the difference from a vlog she controls the narrative (and shots and camera angles) for?
From the wording and phrasing used my guess is a lot of the comments are from people that read or post here.
Lately both Jaq and Janjan say stuff in their vlogs, usually about people giving ideas, input etc in the comment section, and I always find myself thinking….interesting. maybe
someone in the YT comments said that, but I know for a fact it was also something an anon said here. Methinks they're both prob reading here AND getting shit in the YT comments and they forget where they read what and are inadvertently responding to comments that were actually made here
which would be HILARIOUS
I think they also make shit up sometimes. And in one of her hospital vlogs Janiece said "a lot of people have been asking what is wrong illness I have". There was ONE comment. ONE person asking "what is wrong with her? Why is she in hospital?" And Jan twisted that to "a lot of people" to give her an excuse to tell everyone about her vestibular migraine etc. Erm, Janiece: when you are in hospital and people ask you 'what is wrong with you' they don't want to hear your complete medical history. They want to know what landed you in hospital.
But any excuse to tell everyone about ALL conditions she was ever diagnosed with, of course.
But a lot of people here
have been asking questions about whats wrong with her. If you're getting similar questions from 2 sources (YT and the farm) but have to pretend like it's all from one (YT) it's easy to mix this kind of stuff up. Right janiece? All the big bad questions are all a-jumble in that thick skull of yours?
They also get it all wrong. More activity IS adviced by doctors also if you are malnourished. It helps with digestion, apetite and of course is good for your overal health.
My hospital gives out a leaflet to all patients seen by the dietician who were labeled as either malnourished or at risk for malnutrition. It gives general info about nutrition, eating small meals, eating together with other people because it helps you to eat more, etc. Is also states explicitly that it is recommended to take a brisk walk if you can before meals. Obviously it's not advisable to run marathons, but to go outside and to do gentle activity is VERY good for malnourished patients. Unless you are at the point your heart might give out from any kind of stress, but well.. she's NOT THERE. Obviously.
Absolutely right! A true health advocate focuses on what they are doing to PREVENT health issues with a healthy diet, routine exercise, getting fresh air, taking rest breaks, respecting medical advice, seeking and following therapies such as PT and coping techniques froma a mental health counselor, etc. Life isn't about wheelchairs, ports, tubes and prescriptions. Preschool is over. Time for adult activities, adult movies, adult clothes and normal interactions with healthy friends and families with interest and joy in being with them. It's a great big world out there girls. Grow up!
It seems that often, when couples start having connection/ communication issues, one step they take is to try and focus on having "dates". It gives them chance to have a new experience together and also gives them something to talk about outside the humdrum of daily life.
It's so weird that Jaq has been so active lately– she's never like this, let alone within a month of a surgery. I wonder if this is a bit beyond her choice and moreso Judd's demands…
Catching up and it's wild. She rolls her eyes at the vitamin suggestions they gave her to take as if it's useless information.
Given that she and Paul cannot tell what a vitamin even is, it's not like they could have figured that out themselves.
They do act like something major has transpired between the 2 of them. Maybe when she was deciding on her j tube surgery and she said Judd and her mom both wanted her to have it and that helped her decide—maybe Judd and mommy both had a serious talk with her and said NO MORE, after this surgery it's time to stop the shenanigans (kek to use Jan's word by actually properly) and actually
keep moving forward. Judd has the attitude of a man that gave her an ultimatum of join me on the bright side or peace out
Well said anon, well said! If she does all that she actually could
be a good role model, whether she's faking her shit or not. At least she won't be damaging other people in the process and if she's being positive and encouraging actual sick people to push through it dare I say where's the harm in her faking? Kek besides that pesky insurance fraud issue..
Spreading your legs actually pushes the hip into
the socket, so if you're creative there might be ways..
Except that I do not believe for one
minute she ever had an actual hip subluxation, let alone a dislocation.
Isn't it funny how Jaquie seems to have decided to turn her channel around and have a more positive vibe while Janiece is going down the munchie rabbit hole faster than anyone has ever seen? While Jaquie is coaching her, nonetheless? It's odd. Also odd how Jaquie didn't come to visit her in hospital. I know people in Janiece's comment section said that she couldn't come because she was still recovering blahblah, but she seems to do better than ever. I know I
am jaleous at her energy levels. If she can go out to the aquarium, she would be able to visit Janiece in hospital if she really wanted to, right?
Especially since Jaq apparently bullied Jan into visiting her
was in the hospital even though Jan was sick and didn't want to go. But, Jaquie is incredibly selfish so it's not surprising.
I think everyone is fighting with jaquie or has told her in some form they're done with her bullshit. She's taking a play from the keep your friends close enemies closer playbook when it comes to Jan. Bait and switch (and Jaq reads here)–we say Jaq is queen munchie and she loses more and more subs and patrons. So she acts different and magically her tools start working, as she simultaneously convinces Janiece to go down the munchie hole. Because it takes the focus off jaquies munchiness and focuses it alllll on Janjan. It's a good plan, mad props to Jaquie for being calculating and methodical in her life choices
Kek with all the toradol she's using she's gonna end up back in the hospital. Maybe that's what she's after, a giant pity party. I was doing soooo much better y'all and enjoying life and feeling some freedom and suddenly it was all gone and now I'm really sick again. Asspats please!
She's mentally ill with some (or many) things no matter which way you slice it.
I would not be surprised in the least if she’s planning some huge crisis to end up back in the hospital (maybe with the TPN she’s been coveting). She’s in too deep and needs the asspats too much to give up being a munchie, and I’m sure janjan’s hospitalization so soon after hers has her plotting how to get that sweet, sweet attention focused back on her again. Yet her simple-tube-surgery-turned-complete-hospital-disaster didn’t get her quite the number of followers and asspats she was expecting, so now she has to come up with something new and wilder to top everything else. Besides, people are getting sick of the whole EDS-POTS-GP-etc crew that’s constantly having problems and crises, (it’s obvious that nearly all of them are faking), and it’s just not special any more. So I guarantee she’s searching for something that’s both rare and unique, to set her apart.
Tl;dr there’s a huge jaquie train wreck coming, it’s only a matter of what it’ll be and when.
Kek. I may or may not
be already on modafinil and notice no other effects than just staying awake.
BUT I meant it more in a general way: lots of anons give props to her for finally doing something
and showing how she just goes out and lives her life, but it STILL doesn't add up. She went out with Judd two days ago, had her IVIG yesterday and she went out again today. When they went to the aquarium we already said to each other how no one who would actually
have even only two or three of the disorders she claims to have as severe as she claims would be able to do that about three or four weeks after surgery no less, yet Jaquie is doing it all.
Today she not only went out again
, but she also cleverly disarmed any critique that might come by talking about not being ashamed of your good days. Bear in mind that she claims to only be able to do ONE online class a week
because of her illnesses and energy level, yet she is able to go out for who knows how long two days in one week. And the day in between wasn't even a rest day, it was a day on which she received a medical treatment that is quite draining.
I really hope she is actually
turning her life around, but even if she does I'm not sure if it'll be much better. We've already read people who said they felt guilty because Jaquie was able to do so much more than they could and she always cleaned her house etc., and they felt like they're being lazy for not being able to do more. If Jaq starts living her life that good for her (really!) but she can't do that and still claim the five billion illnesses she claims to have. Because no one has all those things wrong with them and also the energy to go out twice
in one week AND do intens treatments a few weeks after they had surgery
, no less. It's just not possible.
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JanJan is definitely where the milk has been. Here's a few comment highlights for your enjoyment.
Gotta get that direct phone number to the attending even when he's off
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She just needs some miraculous Kate Farms
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Dr. Kerri recommends a PICC. Perhaps with a side of CLABSI
Why a picc though? Everyone knows a self-respecting munchie gets a port nowadays. Or do like Aubrey and get a port AND a PICC. Maybe throw in a suprapubic catheter for good measure, so she can really
give her poor body a rest by connecting a night drainage bag so she doesn't have to get up every time she has to go to the bathroom? But there's her diarrhea still, of course. I know! They could do a loop ileostomy. Just until they find the cause of course, and then they can reverse it. But she needs to restrict her activity more, because if she starts being more active she might actually bring her HR down and not fulfill the diagnostic requirements for POTS anymore.
Ah yes, but are you taking it because you have the condition it's prescribed for? If someone who, say doesnt
have that problem took it it would prob cause a noticeable difference. but if you actually need it, it just makes you feel closer to normal.
It's the same as the somewhat common misconception that in hospital pain meds will make someone super high. Not true, if you really need them for extreme pain they make you act more normal than anything because they take away the symptom
(pain) that was causing the issue
That shit made my chest hurt like nobody's business and I had to stop taking it, which sucks big time from a sleepy standpoint. And I have no heart problems. It amazes and infuriates me that Jaq and Jan both supposedly have such sooper severe POTS that they can barely function yet they have nooooooo issues with the drugs for narcolepsy. Or for any of their conditions for that matter. They're such delicate little snowflakes yet can be pumped full of pharmaceuticals with no ill effects. Meanwhile those of us with one or two of their conditions try and (often) fail with every med available and just have to suck it up and deal with it. And those with many conditions play symptom whack-a-mole: what med helps one condition makes another worse or this med might
help but it counteracts with this other med that you HAVE to take, so you end up living with a lot of ongoing symptoms because there's no other choice. Sage for blogging/medical rage
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Looks like now Jan is out if hospital, Jaq may end up back in. This was a post in a group just now.
Well, I for one was wondering what we would have left to discuss now that Julian has been given a medal, Janiece is out of the hospital, and Jaq found grown-up clothes.
I guess I shouldn't have worried that the milk was drying up.
Prob it was that you included Julian getting a medal in a response to a post that had nothing to do with Julian? Guess I (wrongly it seems??) assumed you were bent out of shape about him getting a medal, which I attributed to you being the anon who thinks he's a munchie. Apologies.
I have to say though, I'm pretty excited for the milk another hospital trip will bring, from Jaq or Janjan. Every trip they take to hospital is just that many more chances for someone, ANYONE, that is involved in their care to red flag them and catch them in their lies.
Not bent out of shape about anything. Just summarizing the last few days…someone gave Julian a medal (so he seems all good), Jaquie found her grown-up clothes and did some normal things (so she seems all good), and Janiece got discharged (and she should be all good).
Just pausing to wonder if the milk is drying up. Everything said with good humor.
I'm sure you won't have to wait long for the next hospitalization
When I read the vlog and Instagram comments that suggest piccs and banana bags and other things, I always wonder if those are treatments that the commenter would really like to have…sort of THEIR wish list, too. And if Janiece can get it, maybe their doc will give it to them, too, eventually.
Maybe I'm reading too much into the vlog and instagram comments.
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Just so you guys know,
This photo is only from March 27, 2017. So how can Jaq and Janjan go from this to the bullshit they are at now? JAQUIE IS WALKING at Disney World,!?! I am shocked. She literally uses her damn wheelchair everywhere now. This is evidence of a blatant lie.
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Yet her neck looks fine when she took Harlow on a walk earlier that day. Afternoon delight or shadow?
YES! That's a good find in and of itself, but it's also the video I was referencing the other day when I said in an older vlog she said some of her levels were on the low side of normal instead of too low. Only I couldn't remember where I saw or heard it, but now I've found it. I'll transcribe what she said (at around the 11.00 minute mark and up):
>>My doctor also ran a lot of bloodwork looking at a lot of different things. One interesting thing they found is that my antibody IgE came back on the low side, which is surprising for somebody like me who had so many reactions on the skin testing. They also found that my immunoglobulin A and M were low and my G levels were barely surpassable on the low end of the normal range. So that could explain why I have so many infections and I have a terrible time getting over common illnesses. So she's gonna order more labs, looking into my immune system and we are going to repeat this testing in a month or two. I may be a candidate for IVIG, but we're not really sure yet. >>They also found that my chronic urticaria blood levels came back normal. Even though my bloodwork came back normal for the chronic urticaria, my doctor is going to proceed a treatment as if that's what I have, with Xolair shots, which is a biologic, I get a shot once a month and it's supposed to be a really good treatment option for people with chronic hives. We're gonna give it three months. If I don't improve, or I have another anaphylactic reaction within those three months, she is gonna discontinue the Xolair and treat me as if I have Mast Cell. And she said at that point, it would be a good option for me to get a bone marrow biopsy to really determine if I have mastocystosis or mast cell activation syndrome. Even though my triptase levels are normal, which is usually what indicates mastocystosis, she said that a biopsy would be more definitive. So that is my plan for now, fingers crossed the Xolair works and I don't have any more anaphylaxis.
So it appears this is how/why she got IVIG. I am not a doctor and I don't know enough about IG antibodies, so I would be very greatful if there's an anon out there who can tell us a little more about what this means.
Side note: it seems this video is shot before she discovered local anesthetics tend to work less in many EDS-patients, because the EMLA cream works well for her.