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Jaquie Blake Beckwith, AKA chronically_jaquie, is one of the general Munchausen's/OTT thread (>>>/snow/387658) Munchie Queens.
- She has a Patreon for people to pay her to be "sick".
- She appears to have a few genuine illnesses, but overall contradicts herself 99% of the time.
- She has a button tube but shoves crap food into her pie hole most of the day. Claims she cannot tolerate her formula, and has to get a special type, but can eat fried crap.
- She has a service dog (Harlow) who does tasks that she is quite capable of doing (like grabbing a blanket across the room).
- Her service dog does not get worked the way a service dog should.
- She will not respond to messages online (except on her Patreon) because of "safety issues" (though we're pretty sure it's because she wants money to talk to her).
- She will not allow people to send her mail because she is too sick.
- Refers to herself as a "genetic anomaly".
- Claims to have EDS, POTS, narcolepsy, cataplexy, autism, unspecified immune problems, a mutated mitochondria, and too many other things. Surprisingly, Factitious Disorder is not on her list.
- She appears to be copying Mary Fray.
She enjoys deleting comments that call her out, and has an excuse or explanation for everything, something that is found psychologically in pathological liars.
Everyone is tired of her, even her family, and some people in the Munchie thread, so here's a place to talk about her to your heart's content
Previous thread >>>/snow/409311
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She spells autism wrong in her video header and the first sentence of the video is "this year my medical team and I have discovered a lot more new diagnosis for my selves" I listened to it several times. She definitely says my selves and not myself. What the helll?
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Look at how normal she used to be. In a bikini, on the beach, in the sun with her boyfriend, wearing a little bit of makeup and honestly looking pretty great. What in the world happened that she has allowed herself to become a peeling lipped, puffy faced, Barbie car driving munchie?
I just posted a bit of a timeline for meds and IV saline because someone asked about it in the previous thread because I am an idiot and didn't read the whole thread before replying.
But if anyone is interested, see >>422673
There is also a link to the screenshots of her IV saline history and orthostatic hypotension developing into pots/leg pain developing into ehlers-danlos/etc. history.
As someone on the spectrum, with POTS, I can definitely say without a doubt Jacquie doesn't have autism. I followed her videos for a few months, her posture, the way she talks, isn't typical of someone on the spectrum. Disney would be a truly autistic person's worst nightmare. People with autism tend to have 'special interests' usually if they were interested in medical things, they'd go and get a job in that field, rather than be focused on injecting themselves with drugs they don't need and buying things like wheelchairs, walkers, IV poles, pulse oximeters & stuff to feed that obsession.
Those on the spectrum usually have problems with self care, Jaquie pays way too much attention to how she looks, no one on the spectrum I've ever met has been that self absorbed, vain & manipulative. She appears to be rather sociopathic, with the way she treats Judd & other people around her. She's also doing completely the opposite of what someone who truly suffers POTS would do. If you had super severe POTS, most of your time would be spent laying down, without the energy to go to the supermarket, pick up a camera or clean the house, let alone go to Disney. Her super severe 130 beats a minute is not high at all, notice how she didn't point the camera toward herself when she was filming that heart rate? A person with severe POTS doesn't freak out unless their heart rate is like 170. She's the most munchie person I ever did see. Believe she has antisocial personality disorder.
Sage for Rage.
Autistic people aren't intentionally manipulative, they don't have the social grace or cognitive empathy to do so (at least discreetly or effectively). A lot of neurotypical people think autistic people are manipulative. In fact, NPD/socipathy frequently presents in the same way as autism, so the two often look the same from the outside, even though they are fundamentally different. An autistic person doesn't view "manipulation" the way a non-autistic would.>>422711
Disney is not necessarily a "truly autistic person's worst nightmare", since autism is a spectrum. Probably not the highest on the list for "Best place ever", unless it IS their special interest. But plenty of autistic people can enjoy Disneyland/world within limits.
However, from the little I've seen of her in videos, it does seem like she has pretty good executive functioning, which is not very autistic. Also anon, you didn't sage.
She has excellent executive functioning skills. Her ability to manage a YT site, Patreon page, all her medical appointments, home health needs, insurance, special diet for Harlow, the ability to organize her training from puppyhood forward, and so on, require a lot of attention and organization. Her medical binder is probably a work of art.
Patreon seems on a decreasing trend. It was at 218 in September, dropped below into the 190s at the start of Oct. (when people don't renew, I assume), crept up during the month, dropped again at the start of Nov. to 190s and now sits at 202. Janiece's is at 9.
What's up with the sudden obsessive interest in her blood sugar? Is this a continued Mary/desire for a Dexcom obsession?
Does anyone know this girl: https://youtu.be/smtdeq7T8Ic
Her chronic illnesses have become terminal and she has two accounts raising money for the service dog.
In her intro video, the first comment is from an MD who tells her to throw her pills away. https://youtu.be/mHXejAgc8R0
As someone with autism (I also research autism and mental health as a postgrad), I think it is very hard to say if Jaquie has ASD.
She has odd movements (her hand gestures) but these only start in later videos.
She claims to have sensory issues but rarely wears her headphones and we see that she previously owned t-shirts she now says she can't manage. As an adult you simply don't buy clothes you don't like whether you're aware it is an 'autistic thing' or not.
She has good focus and executive functioning however we see her struggle when the situation isn't in her control. She uses her symptoms to excuse herself or bring the situation back in to her control. Whilst people with autism aren't manipulative in the typical sense when you're in a situation you can't cope with you might do extreme things to get out of that situation.
Her 'special topic' or obsession could easily be chronic illness and social media.
Women on the spectrum are generally more able to 'camoflage' or 'mask' their symptoms and tend to copy other girls at school in an attempt to cope. This may explain Jaquie's obsessive copying of Mary Frey.
HOWEVER people with autism tend to follow rules to the letter, for instance medical advice. Jaquie repeatedly doesn't follow medical advice/ doctor shops. She also shows a very good ability to get what she wants from doctors, seemingly without slipping up and presumably whilst being verbal in all these appointments etc.
I'm very high functioning, I have degrees, I do research, however my executive functioning is less than Jaquie's and I require special support for medical appointments/ emergency visits and some minor adaptations at work.
Overall I don't think Jaquie does have autism, though she may be mis-diagnosed. If she went through diagnostics for an autism spectrum disorder they would have also screened for depression, OCD, anxiety and other common comorbidities/ differentials. So the fact she doesn't have/ doesn't share any mention of depression and anxiety (or the more fashionable OCD) is highly questionable.
saged, med/researchfagging blogging
Some pollens from flowers (esp orchids I think?) can cause anaphylactic reasons, but GRASS? TREES? DAISIES?
Has she ever said what kind of angioedema she has. I mean I pressume not drug induced but other than that it is caused by the most common food allergies (nuts, shellfish, milk, eggs), insect bites and stings and latex.
There is a genetic type "The fault affects the gene responsible for the production of a substance called C1 esterase inhibitor. If you don't have enough of this, the immune system can occasionally "misfire" and cause angioedema."
Other than that it is largely stress, be that mental stress or stress on the body due to infection/injury.
The way she describes it it is like MCAS and angioedema are the same thing but they really really aren't. Angioedema is literally the medical word for hives!
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how did she manage to get nebulized? there's a massive shortage in the US.
Also, a medicine she claims to take but never shows. You would think that a nebulizer would look great in a vlog and her "daily" treatment would be part of the vlog. It is for Mary.
Anyone else would have told Jaquie to put the camera away and enjoy the family time but instead Judd did some of the videoing! She was like a bratty child when she put her head down to nap at the table and he didn't say a word!
Last week was a pretty good shopping week for Jaquie–the mattress/bed, computer, sheets, hangers, squatty potty, tubie laundry bag, Vera Bradley wallet, etc. so this week will start with the new wheelchair dog leash, probably the redecorating of their bedroom (drapes, wall decor, new bedding), the hip and knee braces, etc. Unlimited funds apparently!
This week she will be most likely be back to the pain complaints to qualify for the Ketamine/Toradol injections ($500 minimum for the Ketamine alone), getting the Smart Drive wheelchair part, planning the surgery for the 2nd feeding tube, and trying to work in symptoms from her other chronic illnesses. Guessing there weill be lots of trips upstairs to drive the new bed up and down with the blah face because she is exhausted and in excrucicating pain (no pain sitting on the floor booting the new computer, tho). With Mary Frey in the hospital, she has to rev up her symptoms to overdramatize her own FD woes.
Angioedema attack but no visible symptoms? No hives, redness, swelling, throat issues—how bogus! My take on that is that she hadn't used that chronic illness in awhile and it finally moved to the top of her video checklist.
I have hEDS and POTS (from Jaquie's plethora of claimed illnesses) and can attest that the fatigue that comes with them can be debilitating.
Her lack of energy, however, probably comes from her purposely running low feeds and having a really boring life. When you have nothing to do in your life except focus on how sick you are (and how to monetise it) I can imagine the boredom would be tiring.
It is. Ironically, i spend a lot of time advocating for better access to appropriate mobility aids. With my own wheelchair, I can leave the house most days. Without it I could only manage it maybe once or twice a week and I was far more tired, depressed from being stuck inside all day. The thing is, Jaquie's wheelchair doesn't actually change anything for her. She's still not going to be going out on her own, or reasserting her independence. It'll only be used when Judd is there to film her using it. Now she's decided she can't drive, she's pretty much confined herself to the house in the daytimes.
Was she not looking into doing a communications class? I can't remember if this was an online course or in an actual college. I have no doubt that if she does start it, she'll have to drop out because she's "too sick" (she'll lose interest basically).
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I want to bang my head on the table seeing all her special choclit melk
I guess every good eating disorder needs some bizarre safe foods (on top of the other crap she routinely ingests)
Fatigue my ass. She is full of energy.
There is a reson why her hand movements became more and more frantic as she got more and more sedentary.
Replying to my deleted post? Sorry, I reposted to include the answer because I figured there would be someone who can't add two and two.
She is full of energy, and thus can't sit still. She's got to let it out somehow, so when she's pretending to need a wheelchair and has to restrain from moving her legs, she can't help but move her arms.
Makes sense? It makes perfect sense, unlike anything she says. Observe, don't listen.
interesting theory, anon
If that's the case, she's literally forcing herself to act "sick" for attention. Pathological.
Samefag, let me correct myself, archetypal malingerer.
Pretty sure she knows what she's doing.
If she was legitimately only taking that chocolate milk orally and relying on the tube for everything else i wouldn't blame her for wanting something "fun" and tasty. But she's not.
There are fruits and veg GP patients with severe GP can have… juices mostly though, or vegetable broth (clear). Not very exciting. But her GP isn't as severe as that obviously as she can eat solids.
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I don't really consider myself a psych fag, but I have had an interest in human behaviour and body language for many years now. Lately I've been specifically paying attention to Jaquie's body language when she's expressing legitimate frustration and/or anxiety, and when she's playing up her symptoms, specifically her pain and fatigue.
I've got a couple of screen caps to go along with this, but I'll start off with an example of what appears to be, in my opinion, a consistent gesture of real frustration and anxiety. In this clip she's actually talking about how she's nervous, in regards to her worsening allergies.
She will place her hand over her forehead, and often also run her hand through her hair.
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(cont.) This is an example of what she often does when she's playing up her symptoms. She'll touch her fingers to the inside of the bridge of her nose, usually with one hand but sometimes both hands.
Interestingly, I've noticed she actually does this a lot when she's in one of her "sick face" episodes, when she's talking about how sick she is, and she gets distracted and excited about something else (like talking about new medical equipment or making a RLLY FUNNY joke) but then she remembers she's supposed to be "sick" and she'll do this gesture, maybe a pained sigh (like getting excited was painful) and she'll immediately revert to her droopy eyed, monotone sick face.
Sometimes she'll continue this gesture into her forehead holding and/or hair stroking gesture. But I've noticed that the touching of her fingers to the inside of the bridge of her nose only really happens when she's being dramatic and playing up symptoms.
This particular gesture is something that's pretty commonly considered a "tell" that someone's lying. I know someone who did this a lot when she was giving a statement to the police, and her laywer actually dropped her as a client because it was so obvious to everyone that she was lying (she was). Ever since then I've been paying attention to when people do this, and I've actually found it to be a pretty reliable tell. Jaq does do this a lot, and along with changes in her voice, her other mannerisms etc, we all know she's a terrible liar.
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She even made it the thumbnail for the video for fucks sake!
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So today she had a super serious allergic reaction, they had to pull over on the side of the highway, administer IV benedril, she was freaking out, breathing heavily, sighing, wringing her hands over and over, shaking, rubbing her eyes, doing the "touching" thing demonstrated here: >>423418
Wow, what would have warranted all that, you ask? Her fucking wrist got pink. She got some hives.
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OK, who's shouting into the void on TheMighty?
(Not that it's not hilarious)
We're talking normal doors, right? Not heavy ones? At least I was.. The heavy doors I cannot open by myself anyway. I'm in a chair too, and I really don't see the problem. I have often trouble reaching the doorknob as I cannot lift my arms that far, but if/once I reach it, there's really nothing to it. Closing
the doors, now there's something that can really be tricky. But even those I can do from my manual chair - and remember, I cannot reach. So Jaq shouldn't have any problems. And if IS a problem: why not
stand up and open/close the door that way? That's exactly what I do when I use my powerchair (I can still walk two or three steps). Why wouldn't that make sense? I'd say it makes a hell of a lot more sense than using a public restroom with the door wide open.. >>423412
This is interesting. There was a part in the video about the allergic reaction where I thought 'wow, she actually
seems genuinely worried here. I'm not sure which part that was, but still. I agree that's it's odd how she seems to snap back into certain behaviors/demeanor sometimes, as if she catches herself showing things she doesn't want to.
There has also been some mention lately of how big of a difference there is in her demeanor in old versus more recent videos. I think her gesturing is especially odd when her vlog is more rehearsed, e.g. when she is explaining something about one of her many conditions. I also think it was interesting to see her on that episode of 'the doctors' and during that panel discussion, where she was a little nervous and her gesturing is much more like you'd expect from someone who 'talks with their hands'. Overall she looks more normal when she is less rehearsed.
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I thought that was very odd too, but when I read your comment I looked it up and I saw it said "logbook" and a timestamp. So I think her BG meter has a memory function so you can look up what it measured at a certain time.>>422965
I think she blames mainly her narcolepsy for that. Although that doesn't add up, because she said herself her narcolepsy has been very well controled for a few years now and she already had narcolepsy when she was training Harlow and other dogs at Disney up to three days a week. So it's probably her POTS, too. And of course, EDS, mitochondrial disease, and who knows what else.
Judd was just too happy from his visit with his family so Jaquie had to bring his attention back to her. The camera being magically present, focused and right on Jaquie for her BIG angioedema attack was suspicious–did she set up the camera first, Have it trained on her, then have the attack? How could Judd have set it up and focused the camera on her if he was driving? If her reaction was that bad that he had to pull over, would a priority be to get the camera set up? Her wrist didn't even look red. Or did she just shift into Sad Jaq mode with the sad face, squinted eyes, monotone voice, barely moving her lips and fake an attack? Who else would give a crap to look at the camera if there was a possibility of your throat constricting and not being able to breathe?
I swear she has a written checklist of her maladies that she looks at daily to see which one she is up on the rotation to vlog.
They started filming after they had succesfully aborted the attack. It's not like they actually filmed her while she was pushing benadryl through her port. She's a little more subtle than that (although, I have to admit, not by that
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Forgot to add image my bad
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Especially with the new shower chair she bought a couple months back. "It's going to make me safer and more independent"
And the wheelchair was supposed to do that, and the extra walker for upstairs… she collects this equipment with the promise she will be able to do more for herself and others will have to do less but instead it's been a complete downward spiral in regards to her independence.
Ding ding ding!
I was hospitalized due to an actual mysterious infection or some shit after a surgery last year and wound up on Vancomycin and Rifaximin. That whit isn't fun to be on and feels awful. Even oral Vancomycin sucked. She's a dumbass.
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This jenna person knows what's up. Her 'gp' isn't going to be helped with dairy.
"Jaquie isn't like most people", well we know that much. Kek
There isn't much evidence supporting Jaquie being immunocompromised, though. Jaquie has an agenda, and I'm pretty sure she has her next hospital stay already planned out in her head. She just has to pull it off now.
I was on the highest pill dosage of clindamycin there is for an infection other antibiotics couldn't seem to kill and it quite literally killed the lining of my intestines. I was shitting blood and cramping for days without CDiff.
If they put her on one of the super strong antibiotics my money is on that she will end up in the hospital experiencing the stomach problems she so badly wishes she had. That shit is no joke.
Jaquie was talking about everything that's going wrong (her mrsa, allergies, two toobz) with the camera neatly set up in front of her (on a tripod?) And she was being very rehearsed. Talking herself into a panic over it and getting upset, only it was totally, obviously staged.
She said something about how she's getting very overwhelmed. Then guess what? A fucking JUMP CUT to Harlow jumping up on the couch and sitting on her. She's all "what's this?" laughs "you're not supposed to jump up here?" looks at the camera "are you here to cheer me up?" The whole thing was so fucking fake.
Then it cuts to her making dinner, talking about how she got upset, but she watched a Disney movie, played with Harlow, talked to some friends, her mom came over for a bit… And then she proceeds to cook pasta with chicken, a shit load of heavy cream, like a cup of parmesan and half a bag of shredded mozzarella.
You'd be surprised. I have some experience in rehab settings and the number of times a trained counsellor would mention "injecting" and unconciously mime the action of shooting up… it was weird.
saged for completely O/T ramble
I didn't read all the old screencaps and analysing from the last thread, so I'm just going over them now.
In THIS post>>>/snow/415137
Jaquie (as Harlow) says that Harlow goes to sleep in the cinema (not unusual, when I go out to dinner with my friend his guide dog naps under the table). Except she says that the dog will wake up if she needs to alert Jaquie to anything. This doesn't make sense - surely even legit medical detection dogs can't sense bodily changes to their humans while asleep!?
Y'all were not fucking kidding about that recipe. Heavy cream is so caloric (and honestly kinda pricey compared to other options for sauces). At least this time she admits to using a recipe but for somebody who loves to cook, she makes the most simple, shittiest recipes that seem to be designed for people coming home after a long day of work (quick, easy) as opposed to something she could during her long days home.
On MRSA, according to Resistance Open, about 49% of S. aureus in Tampa is MRSA so not all that uncommon if you're going to get an infection of it at all. (It's about 35% in my location.)
lol i have local mrsa and it's really not a big deal. i just have to use an antibiotic gel and wear gloves when i touch my feeding tube. When I'm admitted to the hosital they place me in isolation just to be sure, just like they do for everyone who has a positive swab. (we swab everyone here because we have so many farms).
about 30% of the total population has MRSA so it's definitely not something to be so dramatic about unless you get an active infection
I'm not sure of the "average" but my last service dog worked for 8 years (unit age 10) when she was then retired due to arthritis. My program that I went through states dogs work for 8-10 years
Sage for service dog fagging
Jaquie uses Harlow for counterbalance which is considered a "heavy mobility" task in the service dog community. It is ethically advisable to have mobility dogs xrayed and cleared by an orthopedic vet and some people even do OFA. I don't know if Jaquie has ever mentioned this happening to Harlow, but I could just have missed where Harlow was cleared. Also I could be wrong but Harlow appears to be a bit bow-legged in the back, but I'm not an expert so sage.
Also I'll have to get some screenshots but the harness/vest that she uses to balance is not even meant to be used for heavy mobility work.
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She says she had her cleared by a vet, though I don't think it was an orthopedic specialist. In her "all about Harlow" video she says that Harlow didn't do counterbalance until she was cleared by the vet at 18 months old, yet on her Instagram account we saw Harlow do counterbalance at the age of 12mo.
The picture is a repost from one of my long series about Jaq and Harlow, but it illustrates the point. Is is
an imageboard, after all.
(My next post will be another picture from that series that's also relevant; I haven't figured out how to attach more than one picture to a post yet.)
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If you want to look up the whole series, here is the longest, beginning when Jaq started her first account (Harlow's) and showing how she got most of her diagnoses. (And how she changes her own history often by changing her account of symptoms to fit a certain diagnosis.)>>414965
If you want to look up how she shopped around to get her IV saline and her port, you can click here: >>407608
You guys really
think this is a good explanation for her/their situation, or do you just think it's a funny theory to discuss?
Cause I find it kind of crazy, tbh. I think it's clear Jaq is the manipulator. Not that Judd is entirely innocent (at the very least, he is one big ass enabler), but I do not think for one minute that Judd is the biggest factor in Jaquies situation. Not in an MBP sense at least; his presence and his actions may very well play a factor in Jaquies psyche and could influence her actions.
I wish she would just admit she has anxiety problems. When my grandpa died earlier this year I could barely eat without pain because the stress flared my acid reflux. It's totally normal. sigh
don't most chronically ill people go to therapy anyway bc it's highly comorbid with depression? Why not her?
Not to w/k but I assume Jaquie as done SOME research as in the cast Mast cell disease Benadryl can help stem severe allergic reactions because they aren’t true allergies - which is why something called a continuous Benadryl drip exists for people severe Mast cell disease that are in a constant state of anaphalyxis. That being said, she’s probably still bullshitting but it is semi-realistic that IV Benadryl would stop her severe reactions if they weren’t true reactions at all but Mast cell relatedness overreactions to various triggers
If she’s telling the truth about how anxious she is after her “reactions” especially she definitely has anxiety. I know people with legit life threatening reactions daily that don’t react as OTT and freaked out as she does after getting a few rashes. How the heck can she claim no anxiety when she acts like that???
I'm pretty sure she has no anxiety, knows it's the emotion she should be feeling so she tries to act it, using stereotypical body language - but she shows so many signs of lying, it's beyond funny. How does she expect anyone to believe her?
- my theory is that she doesn't feel anxiety because she's in full control of her situation- she knows exactly what's going on, whiten, why it came to be, and what she wants to get out of it/ how long she has to keep it up and how severe she has to make it to get her next 'present' or toy from a doctor.
On the other hand, she probably does have mental illness/es that she's keeping secret, which probably do come with anxiety. But does she feel anxious about her health? Probably not- so she has to act it
It's pretty obvious that she is calculating on how to get a hospital admission out of all this, setting the scenario with all of her disorders flaring–allergic reactions, can't eat (did she forget about the cheesy chicken slop?), joint pain (unscrewing the cap of her erythromycin bottle),etc. She is so desperate for a "Team" with all of her "we think", "we are trying" talk–like she has a team coordinating all of her supposed illnesses. CF patients like Mary Frey have a coordinated team including specialty doctors, respiratory therapists, social workers, dieticians, etc. and Jaquie would just LOVE to have her own team. All she has is the docs who she has shopped around for that will give her anything she asks for just for her good insurance reimbursement–no primary physician coordinating her care.
She is most likely a colonized MRSA carrier–someone who has asymptomatic symptoms but can activate the MRSA with invasive procedures (like the coveted 2nd tube that is on her Wish List or the special-Jaquie-high-risk-toenail surgery) or from already having invasive lines and tubes (port, GJ tube). She should be wearing gloves with ANY contact with those lines or with body fluids. She never wears gloves, not even handling the raw meat for the dog.
Again, she made sure the camera was on her during her allergic reaction, because that is the priority when your throat is closing. Holding out the camera on the selfie stick to film it. Pure shittery!
That's a good question…I have a DX of "Vit D" deficiency (as does every other person where I live), but it gives me pause when I see it on my blood work orders.
And I bet she does shop her codes.
Sage for blog-agreeing.
Where I'm from, you have no contact with your doctor/s beside the office- you need to get an appointment for anything no matter how small. I always wonder about these cows when they say "I spoke to my team this morning" or "I emailed my team."
I suppose some doctors hand out email addresses to select patients, but I think about 99% of them will not give out phone numbers or email addresses.
Fair enough that someone like Mary can call or email her doctors and health providers, because she has CF and can't wait around in clinics to see a doctor.
Jaquie has said she emails her "pots doctor" and tells him absolutely everything that's going on with her- and she does the same in appointments because she "wants him to know EVERYTHING that goes on with me." So I wouldn't be surprised if she's emailing him 5 page essays of what's going on with her.
"Team" cows speak of probably consists of the doctor and the doctor's NP or PA that often are CC'ed when you email them.
I have email access to one my main doc but I try to not abuse that privilege.
On the other hand some docs are impossible to reach.
Cows must shop for docs that call/answer at the drop of a hat.
I posted the question about asking questions.
We have our doctor's email address and his cell phone number. My husband uses email from time to time. [The doc and my husband are the same age, weekend warriors, and they bond over their pains from old and new injuries. Neither is growing old gracefully, lol.]
I just remembered this….I'm sure Mary Frey has a legitimate team because that's the way Boston Children's Hospital works. Mary is seen there monthly. We travel very far for my kid to be seen there once a year. A team of 4-5 specialists crowd into the room, each doc asks their own questions, they go huddle in the hallway, and then the main doc and case manager return with the plan. I do not get to ask any of the other docs any follow-up questions. It's all very diagnostic and sucky. My point of contact is the case manager, NOT the team, ever, so that's who Mary is probably emailing as well, I would think, but calls it her "team."
But this is how I picture most practices working, unlike the family practice. So maybe Jaquie has found a lot of one-doc offices that practice cowboy medicine?
Sage for going on and on.
This is how I use our doctor's office. To me this is normal. Jaquie seems to call for e.v.e.r.y.t.h.i.n.g.
The hurricane calls were the ones that got to me, though. Her GI's office is out of power and she calls and calls and calls until finally the on-call line is up and running. She reports pain near her feeding tube site.
OF COURSE the doc tells her to go to the ER because he's sorry he put the damn tube in because (obviously, now we know he didn't even really know where it should have been placed) and because he definitely doesn't know anything about buh-un tubes because his entire hospital didn't have any and all the nurses were oohing over it, plus he nor the nurses knew to check the level of water in it (despite the instructions in the patient booklet and websites everywhere). He wants to say he deeply regrets putting in the tube at all and wishes he had listened to the colleague that begged him to send her to a different GI, after he told the whole story to his colleague and friend between holes 9 and 14 because it took that long.
But now, terrified of committing malpractice, he tells her to go to the ER because their office has no power and if he tells her to suck it up and go to bed and she legitimately has a tube poking a major organ because of her unique anatomy, he then could get sued for malpractice.
Perhaps, to him, this is a nightmare.
sage for probably making things up. I'm sure Jaquie's doctor would not put in a life-sustaining tube unless she needed it. Eye. Roll.
Welp the toys are giving her side effects/ actual symptoms gasp
. She doesn't want ACTUAL pain and suffering, that's Not Fair!
She explains on Insta, but honestly, I think reporting that she's "overwhelmed" falls into the same category as a regular person's humble-brag.
A "regular" humble-brag would be, "You would not believe how many times I spilled paint this weekend while I repainted my entire house." (Look at me! I painted my entire house in one weekend.)
In Munchie Rhetoric, "I'm so overwhelmed," means "LOOK AT MEEEEE, I have so many more doctors' appointments and procedures and drugs to ADMINISTER than you do, nana nana boo boo."
At least, that's how I read it.
Here's her Insta explanation. Try not to choke, especially if you are actually, real-people overwhelmed at the moment:
chronically_jaquieIVIG Round 4 happened on Thursday. ✔ There were side effects, but it was all handled at home - Success! ? Unfortunately I'm in quite the pain flare (Ehlers Danlos Syndrome issues, not IVIG related). Between that, my multitude of on going treatments, and frequent medical appointments, life is becoming overwhelming. ? Though we still find ways to enjoy ourselves among the chaos! ✊ I'm thankful for the support surrounding me, my Lord, and everything else that helps me keep moving forward! ❤
#IVIG #Thankful #ChronicIllness #Warrior #ChronicPain #EhlersDanlosSyndrome #Immunodeficiency
In the latest edition of #ThingsNotToFilmForYT, Janiece is learning about enemas. https://www.youtube.com/watch?v=6hlDk0_YlUA
I could not watch, but if you have insomnia, go for it.
I am sure her Patreons who are signing up to learn how to feed their dogs a raw diet will be asking the same question, anon.
Wut?? She supposedly has severe obstipation, and doesn't know what an enema is? She's very nervous about it, is afraid it's uncomfortable etc. Um.. I'm sorry, but if your obstipation is severe enough, you'll be begging
for a double high enema.
I really don't understand why she's making such a big deal of this test. "No one has ever done it"?? I'm sorry? It's done literally
every day in hospitals all over the world, you nitwit. Plus, that test is not even the least bit painful, it's hardly even uncomfortable. Literally the only
reason someone would possibly be apprehensive about it, is that it has to do with your anus. So naturally, she shares it on YT.
Yeah, BIG suprise, if you have obstipation tests have to do with your bowels and your anus. What did she think, they would find out how her rectum works by having her dance the mamba in a Spanish air force uniform?
And you know.. I don't even think that these kind of things should never
be discussed online. I've seen videos of people with ostomies showing how they change their wafer and bag, instructional videos of people who irrigate their colon or vlogs of people with SCI who use microlax daily as part of their bowel management, all done in a tasteful and normal way. Some light joking about it is also fine by me. Nothing wrong with that. But Janiece and Paul: this is just NOT the way you do it. Just, no. NO. It's just not.
Reminds me of this girl who was kind of new in our group of friends. She was recently in hospital, having tests for severe obstipation. Was scheduled for a colonic marker study and a camera pill and even was briefly admitted when she couldn't go to the bathroom for too long (don't remember how long - doesn't matter). Anyway, she was just out of the hospital and one of the other girls was to be celebrating her birthday. The new girl called her to ask what she would serve for dinner, because she didn't like almost any kind of vegetable, fruits, nuts, legumes, if there was rice it had to be white, pasta couldn't be whole grain, basically no whole grain options of any food available, even bread could only be plain and white, and the list went on.
When my friend told me about that, we looked at each other and wondered why
she would be scheduled for expensive tests?
With Janiece, I don't know if she lies about what she eats. I wouldn't be suprised if the doctor didn't even ask her about it. Or Janiece somehow thinks she is eating "kind of healthy" and insists that her diet cannot be the cause of her problems. If you remember, she told us in one video that Paul could not eat any vegetables
because of his Crohns. Assuming they mostly eat together, that would mean she doesn't eat veggies, either. I'm not sure what she does
eat, but what she is showing us aren't exactly um.. the most wholesome kinds of food. But if even Jaquie wasn't sent to a dietitian before they poked a hole in her belly, why should Janiece see one? Clearly her obstipation is not so severe that she is having difficulty eating. She says she hasn't gone to the bathroom in so long that it's getting uncomfortable, but has no trouble eating ice cream to calm her nerves. I don't know, but most people find it quite difficult to eat at all
when they get to the point where they are literally so full of shit that it's starting to hurt. Not Janiece though.
The NHS (uk) is slowly starting to use emails. Mainly between clinicians (in place of fax). I have 5 consultants and only my mental health team and autonomic doctor use email. The others it is all old school phone the department/ if you're lucky you have that doctors secretary's number and you just hope your message gets to the right person. You usually don't get called back you would only phone to ask for an appointment/ to rearrange an appointment. You usually just get posted a new appointment. Appointments are just when the doctor can see you they don't take into account work/ childcare etc.
Additionally after peadiatrics (which you leave at 16/18 in the UK, none of this weird adults at 'such and such Children's Hospital' here!) it is very unlikely any of your consultant level doctors speak to each other, they all just write back to your GP.
A psychiatrist came by during I think one of her hospital stays for anaphylaxis. Jaquie just said that they concluded that she was anxious during the reactions because she couldn't breathe, but "of course that is normal" so that was the end of it. She doesn't seem to understand that even if it is understandable to have anxiety or depression or whatever due to your medical illness, that doesn't mean that it doesn't influence your quality of life and also doesn't mean you couldn't benefit from treatment. It's like her over-use of "but that is OK" whenever she is frustrated or afraid or whatever. She needs to tell us that it is OK, because she doesn't want people thinking that her emotional state could have anything to do with her physical symptoms.
I have to say that I am not sure what to think of her allergic reactions. I still think they could be real, or some of them could have been real in the past. I find it hard to believe that she would have been able to fool a whole floor or nurses and doctors on three seperate hospital admissions to think she had anaphylaxis if she didn't have swelling and didn't have her throat closing. And somehow I doubt that she would go as far as self-inducing an allergic reaction that could kill her. I can believe that she massively exagerates it, but I still think it is a possibility that at least some if it is real. That might explain why she is so freaked out about it and why she treats every minor itch immediately with IV benadryl.
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She titles today's vlog "How I suppprt my chronically ill Wife" yet this is the face he makes when she announces her IV antibiotics. And of course she's getting IV antibiotics. Mary is on her second course now. J can't be outdone. She will definitely be in the hospital before Thanksgiving at this rate. Goal!!
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Getting ready to cook up tonight's dinner y'all! It's chicken, mushrooms, cream of chicken and cream cheese! Sooper safe!
Did she show her eating it though? I don't remember.
And to be honest, I kind of doubt the merits of pointing out every day that what she ate wasn't the best choice for GP. It's kind of old news.
I do however find her obsession with food and with cooking interesting. It is often seen in ED patients who don't eat themselves, but who love to cook for the whole family. I mean, she says she loves to cook, but she's definitely not very creative with it. So I see her love of cooking kind of in that context.
Since Mary mentioned that she had Red Man Syndrome from a previous Vancomycin infusion, you can be sure that Jaquie will have it too. It's very common (medfag) and easily treated with her fave drug Benadryl, running the Vanco infusion slowly and flushing with high volume saline. No doubt that Jaq will be spending Thanksgiving in the hospital, though, because she's famous for her allergy performances and Red Man wouldn't be dramatic enough so undoubtedly she will have her version of anaphlaxis from the 2 antibiotics.
So happy she had an ADVENTURE today on her preschool fieldtrip, to see the mini-moos, and to have hearty laughs at Harlow at the dog park and after the bath–soooo funny!
Yet another healthy safe meal for GP!
He was sooo disappointed oh my god. And when she was making it she said she likes cooking so much because she enjoys feeding her "family", only just never likes what she cooks?
He literally said in today's vlog, "you always cook weird stuff"
And a while back he was eating southern takeout for dinner and enjoying the Fuck out of it, and said "why can't you cook food like this?"
He's always so whiney about it too. If that was my husband I'd feel bad and actually make an effort to do better.
But jaquie just says "well I
like it." And cooks the same creamy chicken breast bullshit the next night.
Just because she says she's met her top feeding rate doesn't mean it's true. I'm betting she hides a lot of what she really does behind the invisible cloak of the computer screen.
I noticed the hip clutch too during her intense workout and had to laugh—like she was overcoming an insurmountable challenge!
I have eds, and I've been told over and over by doctors that contact sports are a no go. I ignored it, because I don't make eds my entire identity and don't want to have it. I tore my meniscus and ended up needing surgery. It's plausible that someone with mild eds could push through any pain, but they'd likely end up getting injured. If hers was sooo severe, I have no idea how she would go that far in a sport and not tear something, especially with how much she over reacts to everything.
Sage for possible medfagging
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So, thoughts on today's vlog.
1) The poor CNA has to film medical tests now. I'd love a medfags opinion on how this test went (if possible from visual observation only)
2) Suddenly, she's apparently been having fevers from her toe infection (note that she hasn't complained about a recurrent 101-102 fever which is odd, not until after the CNA tells her that MRSA can cause them!). This fits her usual pattern of developing symptoms after* being told she either has or may have a condition.
Any other thoughts?
Jaquie is setting the scene of her dramatic health crisis that will require a hospitalization. Tired, aches & pains, new numbness and tingling, and now a fever. Symptoms mysteriously appeared AFTER the toe culture resulted. Meanwhile, Mary is in the hospital, and having side effects (not anaphlaxis) from her Vancomycin and other antibiotic but she "feels safe". Predicting that Jaq will soon feel UNSAFE and have to be admitted. Buckle up for the ventriliquist talk (lips barely moving), the sad eyes, and the strained voice and gasping over her own antibiotic anaphylactic reaction (because Jaq never just has side effects). She probably already packed her hospital bag with her toddler outfits, and her "toolkit" crap. But don't worry, she will still be able to film all her bullshit drama.>>426610
SHe just hasn't had time to read up on sepsis symptoms. Stay tuned…
yeah that was me, I couldn't believe she kept looking away from the camera!!! she literally NEVER does this at any other time. only in her sooper speshul austisms vidya. also she said she has a hard time with body language yet uses it ALL THE FUCKING TIME, even while saying she has trouble reading body language!!!! she also acts like she doesn't understand simple sayings, that she would have learned by now. because most people don't get them when they are kids but slowly learn them over time, even high functioning autistics can learn them.
I knew she was gonna have an allergic reaction to the "oral" antibiotic. after the reaction on the highway I had a feeling this was gonna come back. it's so obvious she just itches an area over and over, claiming it's itchy from an allergic reaction, but really she's just creating the red spots!!!! I can ALWAYS tell when she's using a fake voice to act like her throat is closing or itchy, it's the same fake voice she uses when she says she's exhausted or in tErRiBLe pAiN…
also I don't know if anyone else talked about this but I also mentioned how I believe she is purposefully not eating as much as she could, in order to lose all function of her stomach and become sicker. I'm fucking positive.
isn't it also amazing how she somehow got on day feeds so quickly, when not too long ago she could barely tolerate a 10mL/hour flow???? lmfao. and right after talking about getting 2 tubes, HER TUBE ROTATED ALMOST ALL THE WAY AROUND AT NIGHT KEK!!!! God she is so bad at this.
I totally agree that she's gonna end up in the hospital VERY shortly. >>425540
obviously Jaquie doesn't think she has mental health issues, for two main reasons. one being that she is actually extremely happy with her situation, loves the attention and care, loves all the cool "toys", the money she gets, the followers, I mean the list goes on. she fucking loves it. yeah she gets bored easily with her "diseases" but she just combats that by scheming up new toys to get or worsening/new symptoms. two is she doesn't want anyone uncovering her narcissistic sociopathic personality and factious disorder. plus if she had any long period of time with a mental health professional they would notice she's not autistic, at all.
O, wow, now I get her reaction. When she got the stuff out of the bag and was suprised and she said "o… they come like this" and she held on a syringe I was thinking 'yeah.. what's special about that? You get your saline flushes, your heparine etc. in a pre-filled syringe, why would you be suprised these would be the same??'
But yeah.. OK, I get it now.
And I agree with other anons that you could see the allergic reaction to her oral antibiotics coming from far away. That was SO friggin' obvious. I have to say I still don't get what it going on. She has a very localized infection; is it normal to get IV antibiotics for that? Of course she got oral abx first, but aren't there other abx that could be taken orally, and wouldn't they be a more logical choice?>>426828
Good catch, didn't even think of that. But I never understood how she can be tossing and turning violently
with her supposed EDS. If you dislocate or even just hurt your joints in your sleep, your body tends to learn not to turn as much. She even said when she had 'feeding tube pain' because she slept on it wrong that after a while she didn't sleep on it anymore, so that couldn't be the cause of her pain. So she can learn not to sleep in certain positions when it causes her pain, but not when it wakes her up?
O, and regarding the new bed: have all of you caught how she didn't have any reflux issues from her feeds now that she is putting the headrest up? So she is sleeping in a position that is NOT recommended for reflux because it can make it worse (there's pressure on the stomach when you are in that position, that's why they recommend you lie in a reverse trendelenberg, which means the bed is still flat but the head end is higher) and now she is not having a problem that she can't have(1) because the feeds go straight in her intestines. Sure Jaq, sure.
1) obviously she can still have reflux issues, but she says she gets them from her feeds and this is one of the reasons why she wants to do day-only feeds.
Of course, everyone is different and preferences can vary widely, but isn't it curious how only munchies prefer day-only feeds over night feeds?
>>426916>>She was supposed to go at the end of October and then never mentioned a word about it.
I think that was when her feeding tube stopped working? Obviously, she was too weak to go because if her feeding tube isn't working, she can't eat what she normally eats. I wonder if she rescheduled it. I doubt it, because as you say, she doesn't mention it anymore. And even if she would find a dietitian who doesn't know about GP, it would be very hard to find one who doesn't know how to calculate calories. So unless she flat out lies, they will know something is up.
"What did you say your rate was? Wait a minute.."
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So this the shot from her upstairs medical fridge yesterday and she says she's been sipping on a Kate Farms nutritional shake during the day. It's an identical shot from Oct 22 during the feeding tube "crisis" … does anyone really believe that she has drank 10 of those since Oct 22 and coincidentally has the exact same shot or did we just catch her in a lie? Also she hauled all of her new IV antibiotic supplies to the upstairs fridge with no mention of muh sooper severe POTS that prevents her from climbing stairs. Or in her excitement for that sweet sweet IV vancomycin did she forget that stair climbing is supposed to be a major feat?
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Oct 22 IG
I agree. And it's not the same picture, just look at the shelf above the shakes. So I think it's clear that she only drank one of them. I tried to find how many she got, but since she never said anything about ordering more or drinking them, I think it's safe to say she only got the ten when her tube wasn't working. That to me makes it very clear that she did indeed starve herself when her tube wasn't working. So much for her "I'll have to make every bite count now, so I'm only going to drink the shakes." I knew
she was bullshitting, but now we have confirmation.
I tried to find if she said somewhere how many cartons she received, but couldn't find it. But as I was rewatching a part of one of her disasterfeedingtubevlogs, I noticed her eye movements.
Just watch it from about the 6.20 mark. She says: "it's not that I don't want
to eat, that's not it at all" - while looking away from the camera. Then "I am a human being I love the taste of food" - watching at the camera, then "I just physically, cannot" - looking away again. Then she goes on how her stomach is 'partially paralyzed' and tells about her symptoms, during which she mostly looks at the camera. I think it mostly shows how that part is rehearsed more. But I would love to have a body language expert weigh in on her. Not only the facial expressions, but of course also her excess gesturing, which is discussed here often enough.
It helps. It still adds to the views and the more views and thus to the snowball-effect of her getting more views of people who don't use adblockers, but at least she doesn't get direct add income from your view.
It depends on the browser you are using. It's not hard to find an adblocker for most of the widely used browsers, though I'm not the person to tell you exactly how and what for any browser out there.
O come on.. watch the video. She really gets red. And the nurse present confirmed it. Of course Jaq is a bullshitter, but that doesn't mean everything
she shows us is made up.
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On a different note.. she appears to have used another KF shake since yesterday. Could she have realized that people would notice? Or is it just a coincidence?
(P.S.: I didn't know if it needed saging, it doesn't really contribute since it's a still from the video already posted - can anyone tell me if posts like this need to be saged or not?)
So I googled 'red man syndrome'. See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC270616/
Basically, the advice is to pre-dose with an antihistamine and to do the next infusion slower. Also, the risk is already reduced with a second or next dose. So it's a bit curious that her doctor would advice to stop treatment immediately. It could be they are just overly cautious because she is known for having more severe allergic reactions, but stil.. I did get the impression that it was mainly Jaq saying she was worried, as she said "it's a common reaction, but I just couldn't take it anymore".
But yeah, chances are she'll end up in hospital. Even though I believe this reaction to be real, the whole situation was just very predictable.
When she was saying she'd been drinking one throughout the day, she said "ugh. This gastroperisis is… Not behaving" chuckles
but the way she said it was just… So fake and rehearsed its actually cringey.
So she would've seen those shakes when she was visiting the fridge, saw one was missing, forgotten she'd already vlogged and photographed the fridge looking like that ages ago and thought she could get away with saying she'd drank that one instead of eating that day because her GASTROPERISIS IS SO BAAAD
(medfag) RMS is a common side effect to Vancomycin and usually symptoms are greatest on the first dose. As I mentioned in an earlier comment, it is treated with Benadryl, given slower (up to 3-4 hours), and often give saline before and after to dilute the Vancomycin in the bloodstream. If the person is symptomatic (redness clears faster than the itching usually), it can still be "administered", just following the above guidelines. It is more of a side effect than an allergic reaction. In the hospital setting, we sometimes see the redness last for a day or two, so Jaq's cleared extremely fast with the standard treatment. She wasn't faking it this time, but Vanco is the recommended treatment for MRSA and is not as effective taken orally for ANYONE, not just "GP Warriors"! If she truly has mast cell activation, she probably shouldn't be taking it unsupervised because the symptoms really could escalate but she could certainly go to an infusion center rather than a hospital. Still predicting she will get her "team" to admit her, because Mary is outdoing her right now. She will probably amp up the anaphylaxis threat and have them do a in-patient Vanco challenge, just like Mary had, checking blood pressure, pulse, etc while getting increasing doses of Vanco. I'm betting she will be using the "feeling unsafe" at home line, because Mary mentioned feeling safe in the hospital. The whole deal is that she has consistently overdramatized so many symptoms or so many illnesses that her credibility factor is zip.
It's a sad day though when a nurse jumps on the Jaquie bus and films her–in a hospital or clinical setting, that would be a HIPPA violation (referring to the patient privacy—not to her dog) and is very unprofessional of her.
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Can't help but laugh at this guys comment. Yeah dude, I'm fairly sure she saw Mary Freys vlog.
Well I'm no medfag but I picked up on that too, that's weird. You wouldn't normally say that I wouldn't think. It's an accurate description of bacteria growth in lungs because they're basically perfect bacteria growing caves in someone with CF.
Jaquie got some bacteria in her ingrown toenail. It's no bacteria farm, not anything like a CF patients lungs anyway.
You would say "the type of bacterial infection" not "the bacteria I am growing"
Thanks - that's what I thought.
This seems so overblown. I've had infected ingrown toenails before and had them sorted by the podiatrist, they cleared the gunk out and sprayed it with iodine.
it's probably different because she's managed to get MRSA in her toe. Which TBH is her own fault for being in hospitals so much, it's very hard to pick it up anywhere else!
Once again Jaquie does the dog raw food prep without gloves (even Janiece wears gloves). For someone with a supposed compromised immune system, why would she expose herself to bacteria from raw meat?
In her glee over IV antibiotics, she certainly had enough energy to unload the big box of antibiotic supplies. The nurse had gloves on for the antibiotic administration, but of course Jaquie didn't wear gloves—yet she brags about she is "very meticulous about sterile protocol". Her Red Man Syndrome was not a severe reaction—many patients have mostly face, neck and trunk redness (not usually legs) that can linger and fades over a day or 2. Hers resolved quickly.
It was extremely odd that the on-call pharmacist for the infusion company would call another doctor and not the prescribing doctor to report Jaq's Vanco side effects. She had to have given the pharmacist the other doctor's number because the pharmacy would only have the prescribing physician's name on the prescription. That would be like your CVS or Walgreen's pharmacist calling your gynecologist for a question about a prescription written by your internist. Makes absolutely no sense at all. Suspicious and possible lie–I wonder if it the number she gave was the family doctor that she manipulates for many treatments and referrals.
Jaquie then says how RMS is a common reaction—like she is a licensed professional with tons of experience.
FYI–MRSA is a superbug that is a staph infection that is resistant to common antibiotic treatment. It is not uncommon for us all to have staph on our skin and in our noses and not be symptomatic. Any open lesion (in this case her toe) can be infected with staph just from wearing sandals in public places–not just in hospitals. If the staph is resistant, it can spread to the bone and damage them. Infected people need to be hypervigilant in hand washing, in washing washcloths and towels in bleach and hot water, not sharing towels, disinfecting tubs and showers daily, and disinfecting shoes, sandals and slippers daily. Finally, bacteria breeds in dark, moist places, so airing out feet and not letting them brew in a warm slipper or shoe is a good precaution measure.
Sorry for medfagging—
Janiece desperately needs to learn to edit. That vlog is way longer than it needs to be. She says she failed several parts of the test. She couldn't pass the balloon they put inside her. She genuinely seemed a bit upset at the end when she was recapping because she didn't expect to do so badly. She debates whether to tell her mom she went for the test at all because her mom says her stuff like she (Janiece) can't poop because she's lazy and if she put her mind to it she'd poop fine, she just needs 30 days to break the non-pooping habit. She also mentions she's had constipation issues since she was a kid and her mom never took it seriously then either.
idk Janiece is on her way to becoming as munchie as Jaquie but her mom sounds crazy on the other end of the spectrum. It's like she doesn't believe in doctors at all and thinks everything can be cured with prayer and positive thinking…
Well, if you ask me something
isn't right. I do agree with the other anon that her mom is kind of crazy (she mentioned before that when she grew up, being sick basically meant you didn't pray hard enough) and I think that might even be the cause of her munchie-ness. But she is SO incredible OTT with everything.
First of all: I had that test, and there's nothing to it. It's not painful, not even uncomfortable, it can however be a bit awkward because there's something up your butt. I'm not easily phased by anything medical, but I can imagine that someone would be. But calling it "the worst medical test of my life"?? Come on, I can think of ten tests that are much worse. And she is being creepy about it, I agree. I mean: yes, if you are constipated a lot then having an enema makes you feel better. But thinking it is 'nice' and even going on and on about that on video
?? No, that is too much even for me.
Second of all, she sees every health problem as a "chronic illness thing". She already said things like "that's chronic illness for you" when her stomach problems just started. I think it is odd when you call a problem you've only had for two weeks "chronic" before you know what's up. Even now, when the doctor told her this would be an easy fix and PT would cure her, she still says at the end of the vid "this is another chronic illness journey" (something like that). No. It's not. If she actually has rectal dysfunction, that is not an illness but a functional problem and it's not even a chronic problem. Also, she wants to await the results and then shove them into her moms face. Her mom basically says that it is her habit not to go to the bathroom every day, and she just needs to go and concentrate. With the testing, she could prove to her mom that it isn't her fault, it is that "my muscles just don't work". But.. that is not what rectal dysfunction is. It is not that the muscles don't work, but that you are not using them correctly. In a way, her mom is right when it comes to this particular problem: it is like a bad habit of the muscles. Not that it is her fault
or that she would be able to think herself better, but what the PT will do is help her to train her to use her muscles correctly and to learn new habits. Treatment is retraining of the pelvic floor and behavioral modifications, sometimes together with a mild laxative. But Janiece thinks the test will prove her mother wrong. She also said a few times that she thinks the tests will prove she has rectal dysfunction, and that 'maybe they will find another problem as well'. I find that odd. Add to that the fact that she is already talking about this problem as part of a "chronic illness" and we should wonder where she is going with all of this. Her attitude to it is not normal, if you ask me. It could be that her mother is partly to blame for that, and the fact that her best and - as far as we can see - only friend is also a huge munchie certainly doesn't help. But Janiece is a grown up, and she can't blame everything on others. She needs to grow up and go live her life.
Yes, J, your toe had the same infection last weekend, but THIS weekend is the one that might require the ER trip. It's a good thing she doesn't have a trip with Judd planned.
Did she read the instructions? I doubt she is supposed to call Alert One while setting up the system. Apparently, someone finally told her since she's not trying it again.
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Did anyone catch this?
Interesting. That is on Mary's vlog? Why? What did they react to?
Sorry I can't make screencaps right now, but was scrolling through the comment section on Jaq's latest vlog. People suggest she might just need the vanco on a slower rate as this mostly prevents RMS, but Jaq says "as of now I'm not gonna take it again" and elsewhere she says she would be less
nervous for surgery then for another abx, because she hates the reactions. Just.. what?? Does she know
what kind of meds you get during surgery? That's more
then just an antibiotic, girl.
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People keep suggesting that she cuts her hair - and honestly she needs it. But apparently it would be too difficult for her. Why is everything such a big deal for this chick?
I'm guessing her autism? The reason being, there are so many videos on youtube about autistic kids getting haircuts. But if she's using her autism as an excuse to not cut her hair as an adult, there are so many things wrong with that.
Not to mention, maintaining hair that long is hard work for anyone, let alone someone with as many illnesses as she claims. It's a wonder she hasn't hired a personal hair-washer.
Hang on, Mary "needs" power assist wheels and organic nutrition? No she doesn't. Just because Jaq has them and doesn't need them because she isn't disabled, doesn't mean Mary automatically needs them because she has a genuine serious disease! What a weird way to view the world.
Sorry not really on topic but just… what?
Ugh sorry I didn't take the youtube url out from my last post
I'll show myself out…
Since Mary posted some sort of collab picture (giving each other high-fives from afar) with Jaquie in it a few weeks ago it has probably led to more people noticing the odd similarities despite different diagnoses (although I am fairly certain that Jaquie's videos come up as recommended if you watch Mary's - because similarities). Anyone who is paying attention to both will see how Jaquie is so similar that everything Mary experiences Jacquie does a week later (I would love to see Jaquie try to get herself a vest).
I'm not sure if Mary is just too naive or caught up in her own world to see that Jaquie is pretty much directly copying what she does (while she has a definite life threatening diagnosis - she has her own set of issues and I think that the chronic illness vlogging "fame" has caused her to be even more OTT and not necessarily taking great care of herself). She probably considers themselves friends (when really Jaquie just wants to outsick Mary).
I'm pretty sure Mary knows what's going on but ignoring Jaquie isn't the message she wants to send.
On a vlog some months ago, there were Jaquie followers commenting about how Jaquie's GP is far worse than Mary's and how they're thankful Mary's GP isn't as bad as Jaquie's… I don't think this thread existed back then- I might try to find the vlog and link it. This has been going on for a long time, and I'm pretty sure the Freys are aware of things- they've probably had comments and private messages etc.
I think the point was that Mary needs/deserves the treatments she gets, but Mary does not have a custom wheelchair and she has never tried to get one. She has a used one she bought in Scotland when she realized she couldn't do all the hills that were there. She uses it occasionally, but it's not a big focus for her.
Also, I believe Mary tried KF formula at first, but it didn't work for her. She actually wanted to mash up food and put in her tube, but was upset that wouldn't work, so she tried KF, which didn't work with her enzymes, so now she uses whatever she got at the hospital.
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These are the comments I found on today's Frey vlog
Can't do screen caps right now, but someone else posted, "Chronically Jaquie has MRSA in her foot? Maybe ask what her meds for it are"
And Mary seemed really careful not to mention toe-MRSA.
Mary would have not any reason to talk to Jaquie. Mary's MRSA is a resistant to antibiotic type of staph bacteria in her lungs which is mega serious for CF patients who already have compromised breathing from the excessive mucous they produce that blocks the airflow. She has an actual team of CF docs, Infectious Disease doc, Respiratory Therapists, Case Manager, Nurses, phlebotomist, etc. Her team evaluates her daily to see if he bloodwork and symptoms allow her to continue with her intravenous antibiotics. Even with her side effects, they decide if the benefit outweighs the risk.
The MRSA Jaquie has in her toe is skin staph and since she rarely walks her toe is not in big danger (doesn't interfere with any major bodily organ or function).
Nothing good, just some posts about the dogs not alerting to any of her "problems".
I saw a comment saying that the organization made an ig post complaining about Jaquie spreading lies about them, but I couldn't find the OP. TBH after looking at their ig, the organization themselves seem a little milky too…
I'm already out of the groups
I should have thought of this before leaving kek
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>>428026>>I'm pretty sure Mary knows what's going on but ignoring Jaquie isn't the message she wants to send.
You know.. I'm really not sure of that. If she knows what's going on, why would she post this picture and this text? That really goes beyond 'not ignoring'.
Mary Frey is truly ill with CF and its complications but she is by no means a 100% on the up and up in her vlogs. She definitely has an undisclosed/untreated ED and treats her husband quite poorly. (Another thing her and Jaquie share is a tendency to have a health crisis whenever their husbands' families come to visit to keep the attention on themselves.) She's not going to be calling out Jaquie for being a bad role model when some of that criticism could come back on her and expose her own issues.
I would imagine she's reaching out to Jaquie and other 'chronic illness warriors' because she's a savvy youtuber. Colabs and networking means more views and more merch sales for both of them. I don't think it's any deeper than that. She's just getting her hustle on.
Probably. And I agree Mary has some issues, but at the same time I don't think you can really compare her to Jaquie.
I find it funny that on the one hand we see munchies seeking out munchies (just look at who is following known munchies and you'll find more of them) yet at the same time a lot of munchies go out of their ways to point out "fakers", e.g. "fake service dogs" and vlogs/blogs about "illness fakers". We even see it here in the general munchies threads as well as this one.
i dont quite agree about the ED. CFers actually need more caloric intake and due to her coughing fits she is prone to throwing up. if you throw up so repeatedly makes the stomach valve weak and food getting pushed out of the stomach is even more probable.
anything else is OTT though. i like reading the gossip guru thread on her. she can do yoga and doesnt need oxygen but still lies around all day long like the lazy shit she is. others with CF that is more severe go to work. and also her relationship with peter is absurdly symbiotic>we we we
personally i think she doesnt really watch other chronically ill vlogs. i remember commenting once something on of her videos. her only response was: "Do you also have CF?". After I replied with 'no' there was no reaction. She likes to have contact with other chronically ill people. she also has conctact with aspen (diabetes type I) from the daly tribe, but doesnt watch their vlogs. or she like the OTT justification of munchies.
samefag: even claire (CF youtuber) is seen going low key hiking with her dog (non service dog I think) and she needs oxygen 24/7 and mentioned doctors say her life expectancy is only 1 or 2 more year.
still mary acts as if she was bed-ridden.>>428439
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Didn't she announce that she was on day only feeds recently?
Yup, that's what I said a while ago. I can imagine that doing it for old vlogs is a lot of work, so if she would hire someone to do that - or better yet: ask her fans to help with it - I could understand that. But her vlog is only 10-15 minutes long, she uses a LOT of rehearsed stuff explanations she has used before, so if she did it herself it would be faster. It's not like she has a job or goes to school, right? Vlogging is basically her job, she just doesn't want to actually work at it. If she really wanted to invest in something, she could get herself a speach recognition software pack. That way, she only has to correct that mistakes of the software and can save herself some time. But no, she has to hire some expensive company. And like another anon said: she can buy all kinds of shit lately while before they had to 'work it into the budget' first. But she can't pay for the captions anymore? Yeah right. Well, good luck with your hospital bed and home improvements, Jaquie.
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Christ, she's doing a "nice thing", y'all. If she really cared about accessibility, you'd think she'd consider this the "right" thing to do, yeah? She's entitled to every comfort but actually things that make stuff accessible…is a nice thing she's doing for people. (Never mind that she's not even the one paying for it.)
What is her mother and/or Judd supposed to say when J points the camera at them and asks if dinner is good?
Her mom looked really surprised/taken aback when she was greeted by the camera.
And then Jaquie wanted her to stay and play a board game, but her mom needed to get ready for work the next day.
Her mom is a teacher. Teachers WORK at night. Jaquie is very child-like in her lack of understanding of what a teacher needs to do to prep for the next day.
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She's getting called out for lots today…
Yeh with her infusion, and feed (I don't know if she has a 500ml or a 1000ml bag) plus the weight of the backpack it is probably 2.5-3kg which is 5-6.6lbs.
In a backpack it isn't really a lot but equally it isn't nothing. It is recommended that children don't carry more than 10-20% of their body weight in a backpack. Whilst Jacqui isn't a child she is theoretically disabled therefore she is hitting somewhere between 10 and 20% when she has her feed and saline running.
Has J ever mentioned whether her docs have ever suggested she NOT carry a backpack because it might exacerbate her neck/shoulder pain? She has neck pain so badly that she needs injections but she uses a backpack for hours each day?
Perhaps she doesn't really wear it that much and it's usually just on the couch by her? We know her YT biz takes a lot of time, but that would also seem to exacerbate her neck pain, too.
I have never seen her complain even one time about her shoulders or neck from the bag pulling or from computer work.
I'm the anon who (yesterday I think) brought up Jaq not using the pledges towards her CC like she said she would. I agree she's probably just talking about it because Mary and Peter are getting professional captions now. But also, they're paying out of pocket. Meanwhile Jaq isn't following through with what she promised. She probably feels out-done, and I imagine she wouldn't want to draw attention to it because she doesn't wanna get caught out. She's usually very censored. She never brings anything up that might show her in a negative light unless she feels people are catching on already. So who knows, maybe she did see my comment here.
But what really pisses me off is how J and J were SO mean to that woman who asked about the patreon pledges not going towards CC, Jaqs subscribers were being nasty too and Jaq wasn't stopping them. And she was just asking because she herself needs the CC. She's exactly the kind of person Jaquie "kindly" wants to help. Yet none of the videos have been properly captioned (I know this because I use CC most of the time myself) despite Jaq accepting pledges for it, and showing us every day something new she's bought. New laptop, new bed, new decor, new medical shit she doesn't even need. But you guys, there's NOT ENOUFH MONEY FOR CC. And when someone just simply asks why there's still no CC, she gets ripped apart. This is sooo fishy. If Jaquie really was as genuine as she tries to come off, she wouldn't have responded so passive aggressively, deffensively, or mean. She would've been apologetic becuase someone who actually needs CC wasn't getting something Jaquie had promised months ago.
Carrying even one liter of saline + pump in the over-the-shoulder bag provided by home health (yes Jaquie, you don't need your fancy altered backpack) threw my h-EDS shoulder out of whack a few times. So it surprises me that with how bad she claims her neck pain is + supposedly shoulders so unstable that she needs power assist on the Barbie car that she hasn't complained about the backpack making it worse! Or that she would continue to cause herself pain and injury.
"The backpack I need for muh nutrishun and salt water is hurting me sooooo bad y'all so I need a second wheelchair for my backpack!"
Carrying that much weight in any bag can be painful in eds, in the shoulders, neck, and back (and is why a lot of us try to do feeds at night!). Plus, she’s home literally all day, why does she specifically have to run her iv fluids away from home? She’s not even on gravity fluids, they gave her a pump. Normal infusions run 1-2 hours. And why in gods name does she need that much fluid when she can eat vegetables, pasta, cheese, chicken, fried shit, etc?
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Some of the comments. She has already threatened to delete the threat if it continues being controversial.
Caption companies put their clients' videos in a queue and then as freelancers get to them, they get captioned. Typically, the videos get broken into 1-2 minute segments and the captioner might only work on part of the video. And then it gets put back together and goes through quality control check.
A 24-hour turn-around does not seem too long to me.
Yup that one. Thanks for grabbing it I was sad to see it deleted so quickly, it'd be nice if more of Jaq's minions could read that kind of stuff because there's WAY too much unconditional praise on her vlogs.
Props to whoever left that comment, I enjoyed the fuck out of it.
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Oh, you poor suckered commentor. EVERY day is Jaquie appreciation day.
And I agree with an above anon who stated that all Judd probably wants after 5 12hr shifts and an out of town trip is to veg on the couch in his sweats and play video games with Paul. Instead he'll get to chauffeur around Jacqui in her Barbie car to god knows how many places. Maybe she'll have him take her menchies to get ice cream he doesn't like on his own dime?! Omg much excite!
She bought her bed through financing, so - according to Jaquie - that has nothing to do with her Patreon money. Um… she does
realise that 'financing' still means she has to pay for it, right?
And yeah, EcoFluffyMama (welcome here, another cloth user, I presume?) is 100% right. She said her main goal of her Patreon account was to get CC, yet she didn't. The only reason she adressed it was probably because Peter and Mary talked about it and EFM asked about it a couple of days ago. As someone else in the comments said: if she would rather use that money for her internet shopping she should do so, but she has to be honest
about it. If she simply would have opened a Patreon account just to supplement Judds income, people wouldn't comment on it. It would still be trashy, but at least she would be honest. If you say you are going to use it for CC, that has to be your first priority.
And if she really
thinks it is important, she should just do it herself. She is defensive AF because she has a reason to be.
Also with Judd in the armed forces doesn't that mean she has good insurance? And given all her treatment would hit her maximum out of pocket for the year quite quickly? (I don't really know how US insuranxe works.)
So people saying about alleviating the impact of her medical bills are wrong, especially as her dad is $$$
O, a quick question I had regarding her infusions. Someone mentioned the weight of it all (funny how she doesn't seem bothered by that, eh? She even wants to carry stuff around by day instead of just doing night feeds like everyone else) and that reminded me of something. When I first came across her vlogs I wondered why she didn't do her infusions at night, but then I thought that maybe that made sense as she would have to go to the bathroom more often so she would have to get up a lot. But when someone in the comments asked her if she had to pee a lot with her infusions running, she says no, because 'her body needs it'.
Now, I am not medically trained, but normally whatever goes in has to come out. If you're in hospital hooked up to fluids and you don't pee more as the drip increases, doctors start to worry for your kidneys. I don't know a thing about IV fluids for dysautonomia though and she claims her doctor says she is 'probably' hypovolemic because of her reaction to the infusions (never mind that the more invasive a treatment is, the bigger the placebo response and that your patient could have been dehydrating themselves, just stick in a port after two infusions if they say it works, right?)
Does anyone know if her claim makes any sense? Would she pee less if she actually was hypovolemic (wether she is or not - she could've looked it up and claim it for that reason, of course)? Or is this just another sign that she is dehydrating herself? I think this was before the feeding tube even, so she still claimed to be drinking 2,5 or 3L of water every day. It just was 'never enough for my body', dixit Jaquie.
Indeed I am a cloth user :)
That was my point that no one seemed to get. She started her Patreon for the sole purpose to caption. The idea I believe was leftover money would help supplement their income. But she makes money through merch and adsense. So there's no reason to use the Patreon money for anything else beside the captions. It drived me bananas she's deleted comments in agreement with me, which makes me look the only only with an issue.
Forgive me for a bit of personal blogging but it's relevant to her GP. She's had no treatment beside tubes. I've had to go through things like botox and I'm facing my stomach being removed due to my GP. I still have my NJ, I've been on a liquids only diet for 2 years but now can't tolerate that..so how, HOW is her GP serious?! This doesn't add up. Bit like her Patreon.
Saged for a bit of personal blogging to highlight her GP inaccuracy.(USER HAS BEEN PUT OUT TO PASTURE)
I know this is a controversial thing here but I would appreciate it if I don’t get attacked cause I’m just trying to answer questions. I’ve been getting IV fluids regularly for about a year now for dysautonomia (and no… it took 7 months before they even came close to considering a central line - a port after two infusions WTF???) and I do think Jaquie’s not peeing claim is weird.
I do know some POTS patients infuse at night but the majority say that increases swelling. I’ve never infused at night but I could see swelling being a bit of problem from your ANS maybe causing third spacing - especially with MCAS which also causes third spacing. I’ve always run fluids during the day because, quite frankly, they don’t last for long. One bag run slow (which benefits more than fast) gives me good symptom relief for about 12 hours then my Urine goes dark and I stop peeing and start fainting again.
That being said I was majorly dehydrated wen I started my infusions - e.g. vomiting everything I drank dehydrated. But even with no other source of hydration my infusions STILL make me pee. I do have days were I pee more than others, supposedly when I’m already more hydrated, but I’ve never had a day where the infusions don’t make me pee at all. I feel like that claim is highly suspicious because even with no oral intake she should be getting fairly sufficient hydration from her feeds and her fluids enough to have the urge to pee a lot during them.
Just cause you’re not pee doesn’t mean you “need them” more than someone who does pee. It kind of seems to me that by claiming she doesn’t pee is her very uneducated way of trying to make it seem like she’s so severe and needs them so badly, but TBH she’s be better off developing a kidney problem to explain her concerning lack of output.(USER HAS BEEN PUT OUT TO PASTURE)
too many things don't add up with Jaquie- it's beyond ridiculous.
Saged for weird question- what is a cloth user?>>429153
It's BS again- her explanation doesn't add up plus there's no way of knowing if she's actually hypovolemic without a radioactive test which they don't do any more. She probably just pees an average amount since she doesn't drink enough water.
Just in case anyone wants more input from a (real) POTS patient…
I am very prone to low blood volume, low blood pressure, and other symptoms of hypovolemia. My doctor refuses to even discuss the idea of saline infusions, so I do the damn work and I commit to drinking water constantly throughout the day and upping salt/electrolytes. I pee every hour at least, sometimes more. If I slack just a little on hydration, that rate drops dramatically and I can easily go 5-6 hours without peeing.
Also, much like Jaquie my stomach has a hard time accepting medium-large volumes of water so I use my fucking brain and I take it slow. But it works. And my stomach can't handle half the shit she eats.
If jaquie isn't peeing often, she's not trying hard enough. Simple as that. If she really committed to it it'd be possible. If she can tolerate ice cream, chocolate milk, fried food, rich cream sauces, pasta, overcooked chicken etc… She can drink the fucking water. Her infusions are just another toy- oops, I mean "tool".(USER HAS BEEN PUT OUT TO PASTURE)
>>429114>> I will be working a new side job soon myself.
If you ever get to caption Jaquies stuff, please
put in little fun bits, e.g. by putting <in monotone voice> before the text if she is particularly monotone that day. Please?
See it as doing a public service.
(in monotone voice) I've just had such a hard day y'all, my headache is so bad… but I got this new thing
(perks up) it's an alarm system in case I faint which I do all the time and Harlow can push the button!
(monotone) this is just going to help me feel so much safer on bad days…
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Direct emails are somehow a safety risk for Jacquie, I guess.
The thing is, she does pass herself off as an expert. She "advocates" for herself (ie. pushes docs and other medical staff to give her what she wants).
I can understand why other (possibly actually sick) people want to know how she did that if they're struggling, and also I understand why she wouldn't want to tell them (because she wants to be the sickest).
I'm such a sucker. When she did that big intro about how she wasn't going to focus on her because it was Judd day, I actually thought she was showing a more considerate side of herself! LOL NO. As soon as she can, she's lying in bed bitching about how sick she is. :/
I gotta say Judd was a good sport about the whole thing even thought he clearly just wanted to stay home and play video games. Psst Jaquie, since you read here, if you really want to show Judd how much you appreciate him: spend some of your endless TV time watching the Star Wars movies and learn a thing or two about something your husband clearly loves. I mean come on, even people who've never seen the movies have enough pop culture osmosis to know they're called stormtroopers not friggin SPACE PEOPLE.
Had to roll my eyes at the convenient "hips subluxing" described right as they got
home. Got to make sure babe knows there's no chance of getting any strange on his special day!
I pretty much don't believe anything she says! But god forbid someone thinks she was symptom-free for even a few hours!
I get she is all about 'raising awareness' but even IF she actually had these conditions then honestly I really think you'd just not mention every detail all the time!
I have health issues and I don't tell my friends/ family every time I go to hospital etc or every symptom. There are times when I need their support but if every single time something happened I called them I wouldn't blame them for ditching me! If you have health issues then these things become routine and literally aren't worth mentioning. I know Jaquie has no friends (other than Janice) but imagine you met her for coffee and made the mistake of asking how she is?!
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What's the bets she starts wearing dresses more often, just so she can show off her precious toob
I don’t believe her either, especially when she says she’s been throwing up all day, because she looks fine. Obviously she’s purging sometimes (moon face), but she doesn’t look like she’s actively throwing up. Also, if you’re someone with GP who does throw up often, you drain out the bile, and you certainly don’t eat the shit jaquie does. Once the bile’s gone, vomiting usually stops, unless you’re a total moron and eat. If your stomach is empty, you won’t have vomiting. Of course we all know that jaquie is full of shit, so that doesn’t even apply to her. She’ll say anything to get those asspats.
Right. If she reacts that
well to zofran, what's the feeding tube for?
The "vihtamin" pronunciation is really one of the most annoying things she does. I looked it up because it aggravated me so effing much and discovered that is how it is said in British English. And she was born in the U.K or some shit but literally says NO other words in British English and has zero hint of an accent so I have zero clue why she insists on saying "vihtamins"
Sage for rage.
Depends on your position. I has been known to happen to EDSers.
But I don't believe for one minute that her hip subluxed. Or ever did. But it was odd that it was Judd who mentioned it in todays vlog. So maybe it is her version of "I've got a headache today, sorry babe". Because she basically says she has headaches (almost) every day, so she has to think of something more special if she isn't in the mood. Though somehow I wonder if she is ever in the mood. I don't know, for some reason I don't see her as someone who would really enjoy having sex. Sex is a not all about her, so that'd be a problem.
Yes well, hip subluxation is sooper speshul for sure. Christina Doherty, who gave Jaquie the dress feeding tube tip, has real actual EDS (and POTS and MCA) and her hip sometimes subluxes from things like riding in a car for too long. Obviously J has to have it too because that's just so cool!!
Funny thing, tho – Christina can't get Zofran anymore because "they only give that to cancer patients" (paraphrasing her there). Well, cancer patients and munchies, apparently. Also, even though Christina is practically bed-bound a lot of the time, she goes to physio several times per week and hangs out with friends and has hobbies (jewellery making, painting and crotchet). And she's never OTT – in fact, she only mentions her pain in passing, except when it's so bad she's nearly crying. And she does
advocate for getting better and has relevant informational videos that aren't just All About MY So-and-So. Also, she got her port after Jaquie got hers, because she had a PICC line for the longest time to try out the infusion therapy. Like you're supposed to. Ugh.
Sage for ranting and OT and also this is my first post here so sorry if I messed it up…
I have EDS and the only time I've subluxed my hip is whilst horse riding (which I do occasionally as part of physiotherapy).
I get IM cyclizine for vomiting but this is given in A&E (the ER). Some people do have it IM at home but pretty rare.
If Judd loves Star Wars and video games, why didn't she have him pick out new games and veg out at home? He works all day or all night, then buys the groceries, does the laundry, drives her ass everywhere and listens to her go on endlessly about her ailments. Instead, she has him cart her to the aquarium so she can show off her handicapped equipment at the aquarium. When Judd stopped to watch the giant octopus–his favorite display–he said, "yeah, Jaquie already rolled away". Then there was the public display of her port and feeding tube line hanging out of her dress at the restaurant, while she sat and watched him eat. At least he got to eat some beef and not her shitty chicken!
Of course she couldn't let it be a real day about and for Judd–she had to work in her "relentless vomiting from her horrible nausea", how she was "struggling", "testing her limits", maxing out on Zofran, and of course, mentioning her "texture issues", like she was some kind of hero for her sacrifies for Judd Day. Meanwhile cancer patients are puking and insurance won't cover Zofran, paraplegics or quadraplegics can't qualify for Smart Drive wheelchairs, but it is Jaquie who is the example and advocate for chronically ill. And her Patrons can't fawn over her or give her enough money to encourage this shit. Finally, a hip subluxation? Really? And you can lay in bed with the monotone, sad, poor me face—she would be howling at the moon in pain if it had really subluxed–the after pains are almost as bad as a subluxation. Judd believing her shit makes him one tick above a rock mentally.
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I had to go back and screenshot this nonsense because I nearly spat out my drink. "I'm so weeeeeaaaak" wrestles a police officer
Well gee, now that you suggested there might be something better we'll get to see her trying to get Emend by next week.
I would have to say the cringiest part of Judd Day was the card she gave him with the t shit gift about how he forgot he wanted it, but thank goodness his thoughtful wife remembered.
He has purpose as long as he brings in his salary and plays the role on camera. Also since Jacquie's decided she can't drive (YEARS after being diagnosed with narcolepsy and epilepsy and still driving), he is necessary to her. Also someone's got to make appreciative statements about her cooking, since everybody
knows she can't possibly eat it herself!
kek yeah, even after taking nausea meds, I'm on clear broth for a day or so after a bad episode. It seems to give Jaquie a magical impervious stomach!
Also re: the never pooping. Didn't she say she had frequent diarrhoea recently? (Sorry for gross/TMI gut-fagging) If you are chronically constipated, often the only stuff that makes it through the blockage is liquid shit.
Sorry. So sorry. But not that sorry.
Judd Day is actually "Jaquie is a brave martyr warrior" day. It's just an excuse to show how apparently caring she is.
I wouldn't be shocked if Judd lied about his work schedule just to go shoot some pool with his work friends or something afterwards. Guy needs some downtime that isn't "making videos of Jaquie time".
Jaquie gets a lot of her "what can I do/have next?' ideas from Christina. I wonder when Jaq is going to get her hip and knee braces because Christina has a closet full of various braces that she vlogged about, so Jaq can decide which ones she will manipulate for. Of course, she will have an allergic from the brace material, because Christina did. I can't wait to see Jaq decked out in her strap-ons over her day/night toddler clothes. >>430233
Whether she is constipated or has diarrhea,she is still full of shit! Maybe she and BFF Janiece can give each other enemas then crawl back into Janiece & Paul's bed and watch another Disney flik. >>430415
Yeah, I can't imagine Judd thinking, as he climbs into his truck after work, "Man, I can't wait to get home"–knowing what he's facing. ALthough lately, he seems like he enjoys being in the vlogs—Celeb?
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Her fans are just fucking weird.
Wait, WHUT? A general anaesthetic?
If she's actually sick (sore throat, cold etc as she was claiming) and has asthma, and it's an elective surgery , then it should have been postponed.
But of course she wasn't sick. I'm still naive sometimes.
Braces (n/inc neck) should only really be used when you're using the joints involved, or when pain or dislocation risk is worse, otherwise your muscles grow to become dependent on them and they can cause their own problems.
So I expect her to be wearing a full set from now on until she starts experiencing new pains (caused by the braces) that must be the sign that her serious EDS is finally (oh my gosh you guys) … terminal.
Is it just IV Zofran that's hard to come by? Because I get the oral dissolvable version (which doesn't do shit other than make me cringe with the fake grape flavor)
I also wish Christina had a bigger following because she actively tries to live as normally as someone with her conditions can…rather than Jaquie who sits and mopes about the littlest things.
omg you're exactly right. I assumed it was because the real nerve conduction test is unpleasant and painful, but yes, there's also no way to fake that kind because it measures electrical impulses.
anyone know what the kind Jaquie got is called?
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Janiece calls her husband a service human too. Wtf?
In Jaq's case, everything is over the top and there is a history of her modifying what the doc really said and what her personal munchie interpretation of that is. Usually nerve conduction tests are done in combination with
the EMG for the full picture of conduction and she only had the NCT. Plus she tells what she wants to tell and there may be only a thread of truth to that because she is so desperate to be ill.
That's all she could come up with to vlog? That she hasn't showered in 3 days? Ate bread–a big mast cell trigger
–except when it's not. Whatever fits the moment, Jaq.
Urgh this pisses me off so much. She literally picks and chooses what bits of what illnesses she wants.
She supposedly has 'autism' but is fine in noisy places, fine going to appointments… (like HAPPY going?!)
I have Asperger's and my brother has autism and everyone with autism IS different but she geninely doesn't seem challenged by it. She also got through school with not diagnosis 100% fine etc. and without any mental health problems (supposedly).
Most people diagnosed late whilst they may have achieved at school usually have experienced substantial anxiety/ depression/ suicidality/ behavioural issues due to the environment and not knowing WHY they were different/ finding things hard.
There is thought to be a link between hypermobility and autism spectrum (and dyspraxic like symptoms) but arghhh
sage for ranting
Still the term service human is so fucking cringey and honestly kinda gross? I can’t imagine calling my S.O my service human
Sage for no contribution
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I think I found a Jaquie inspiration account. She talks about ketamine, how she prefers to be on a real food formula because it's better, how she has a team of doctors and she switches doctors a lot. It's like looking at Jaquie's account, but the person actually seems sick!
Isn't the point of CRPS that it is localised to one area though?
I've seen a few munchies online claim they have CRPS everywhere which just sounds bizarre.
Actually, toes are usually quite hypermobile in eds, and the slow healing is usually only in tissues, especially skin, but I completely agree that anesthesia for an ingrown toenail is extremely excessive. It’s not good for pots patients, and jaquie’s also claiming nerve damage, so shouldn’t her toe be less sensitive? Plus, eds patients usually have high pain tolerances, while she’s treating a toenail like she’s broken her leg. And yes, lidocaine can be less effective in eds patients, but you just use a larger dose more frequently, which is much safer than being knocked out, even if it’s light anesthesia or sedation. But jaquie’s got to justify spending $15,000 on her wheelchair somehow!
>>430918>>Anon, who posted all those screen caps of her port bullshit do you see anything on her Instagram you can dox her on regarding this?
You rang, m'lord?
mentioned it before. Long ago, I'll have to look it up though to be sure. It was I think shortly after they moved to Tampa bay, so that's about a year ago? She said she was to see a neurologist (I think?) to look into "possible small fibre neuropathy" because of the leg pains she has had since she was a child. However, as far as I'm aware, she never mentioned if she was tested and what the outcome was. She pretty much dropped the leg pain as well. During the time she was still looking for a POTS diagnosis and angling for IV fluids she posted once about Judd having to drive her to the ER because her leg pain was so bad. She has barely mentioned it, since.
Her pain symptoms seem to have changed from "leg pains" to "hip pain and subluxations and other joint pain." Her (possible) nerve symptoms seem to have changed from "leg pain" to "pins and needles in both arms and legs". Which, for the record, is so common in HEDS that most patients are never tested for any nerve disorder/damage unless they develop severe weakness along with it.
And as another anon said, she also mentioned nerve studies. One of her very recent vlogs features a nerve conduction study and she talks about having it had before.
I don't know what to think of it, to be honest. I find it odd that a rheumatologist would refer her for nerve conduction studies - maybe it's different in the US, but in most countries such tests would almost exclusively be asked for by neurologists (maybe with some specific exceptions, like tests for CTS might also be done for hand surgeons and orthopedic surgeons). I wonder if a rheumatologist would be able to interpret the results correctly. It's a very sensitive tests and results can be off if the patient even has cold hands or feet or if they are sitting in the wrong position. Normally the technician who does the testing would know how to carry it out obviously. But since Jaquie always seems to find doctors and other professionals doing things they wouldn't normally do, I tend to take pretty every suggestion of her 'team' with a pretty large grain of salt.
Apparently, she also has some problems in her lower back now that are causing nerve problems in her legs. Yet I cannot remember her ever mentioning lower back pain. We'll see what the MRI shows, my guess would be not much. Or maybe some incidental finding that of course gets blown way out of proportion.
I'm actually shocked she's never had an MRI of her neck with all the complaining about "muh servurr neck pain" and the high incidence of herniated discs in (actual) EDS patients.
I swear to god if they find an incidental syrinx she is going to be in heaven.
True. I don't know anyone who doesn't have instant at the very least
even if they don't drink coffee themselves. Just like keeping creamer if you drink your own coffee black. It doesn't cost a thing and it makes every family member, friend or repair man happy. But if you have a friend or family member who drinks coffee, it's even weirder if you don't have any. Most of my friends keep tea flavours they don't like themselves because someone they know likes it. Did she say they normally had it but were out, or just 'we don't drink it, so we don't have it'?
It is very telling though. Of course we know this because we watch her vlogs, but they never
have any friends over. I don't think Judd even has any guy friends, except Paul. Jaquie of course substitutes real friendship with online asspats from strangers who watch her vlogs and make her think she has friends, but what's Judd's excuse?
Agree about the coffee but J & J wanted to leave for Orlando so she and Janiece could crawl into bed and compare chronic illnesses while watching Disney movies. Daddy is only good for one thing–$$$$$. At least that gives Judd's mom some hope that the Jaquie Shit Show will be limited at her house.
Janiece was bitching about people talking to or about her service dog. Her vlogs are the worst–she could edit them down to about 3 minutes tops. She is incresingly her chronic illness list almost daily. >>431716
Who would want to be friends with them? Jaq has YT & IG pals and Judd is a dudd!
They don't keep any in the house. She made a big deal of mentioning when her mom moved out that mom had brought her own coffee brewer because she and Judd don't drink it. When her mom moved out of course she took her brewer and now they are back to having nothing.
Judd's excuse is probably shame in regards to his relationship. Haha maybe, idk, but Jaquie doesn't seem like she would be very accommodating to his guests due to her sooper severe e'rrythang
I can't believe she has created this unlikable image for herself and even if she wanted to crawl out of the hole she has dug herself into, I don't think she knows who to be. WHo is the Jaquie without the chronic illness warrior title? Just guessing she wasn't popular in school, didn't have many friends, etc. and has become a virtual shut-in and turned to anonymous media attention-seeking by claiming illnesses. Even Janiece didn't like her at first but has also fallen into her own illness rabbit hole, copying Jaquie. There are so many chronically ill claimers on YT and I think they compete for the largest number of subscribers, followers, patreons and the greatest number of supportive, sympathetic comments. She is so unlikable in this role, is so suspect for lying, and such an incredible bad influence on young girls who may be insecure in themselves and are copying her. One way to undo some of this damage might be–if indeed there is any truth to her diagnoses–to be the example or warrior that lives fully DESPITE any illnesses. Setting and reaching personal goals, overcoming symptoms, and/or putting the focus on helping others would absolve her somehwat from this nighmare she has created for herself. Or she could train service dogs for others. Or work for a hospital, because she certainly has a talent on ways to obtain insurance coverage.
Ironically, her "fans" will say the opposite - that's she's very likeable, selfless, brave etc.
Also re: training service dogs - can't recall which thread it was, but she has been kicked out of a few SD groups because of either poor training or lying about it.
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This call out is good. In today's vlog she tries to justify getting a real Christmas tree despite her severe plant allergies because the fake ones collect too much dust. Sounds fishy.
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We got to see her Thanksgiving toooobie pad y'all!!
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More adjustability. This from the chick who supposedly isn't safe to spend time alone, can't drive and just invested in a medical alert button.
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Of course she doesn't have depression. She LOVES living like this. She lives to live like this. She's mentally ill for sure but definitely not depressed. That would be the normal reaction to someone who had 11 or so "chronic" illnesses.
Yeah, talking with your eyes slit open, monotone voice with (cracked, dry)lips barely moving, and no expression is NOT depression.
"But that's ok"……
Maybe its the new chronic illness: Fakery Fatigue. It's very rare–only she and Janiece have it.
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Clearly she's got nothing to do besides sit around on social media. And I prayyyyyyy this was sarcasm.
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guess who's too special to have her "monthly" so she needs even more pills to stop it?
No more than it would be for anyone else with her plethora of conditions. I know lots of people with EDS/POTS etc who've chosen to have kids, and even though I couldn't do it myself, it is not impossible and not specifically advised against by doctors.
Psychologically, though, it's probably best she doesn't.
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Our resident five year old. Cookies and hot chocolate while the grown ups eat. And then she has small plates from their dinners instead of ordering her own. Even though she made a big deal about not being hungry and only being at a restaurant so Judd and his mom could eat.
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Anyone see the most recent reaction to that comment? It's.. interesting, to say the least. I am not even sure what they are saying. Are they saying basically what we say (i.e. she loves the life she lives, so why would she be depressed?) or is it more a "you cannot compare the chronic illness experience from someone who has a good team of doctors and who is reasonably affluent with someone who has to worry about getting their much needed treatments covered because no coverage equals no treatment for most Americans"?
If it's the first, it's pretty well concealed. But as I said, I really don't know with this one.
It's hard to say for sure but I would guess OP is smart enough to know that without some nuance, the comment will get deleted. Reading between the lines, personally, I get from that comment - she doesn't have to work and is completely supported. She seems to have zero goals other than being sick. She gets continual asspats from her fan base. She seems to hold some magic card when it comes to getting whatever medical treatment she wants regardless of how OTT or unnecessary.
Most other people with chronic illness on
the other hand, have to work, have to interact with the world, have insurance companies that battle and deny everything,
don't seek and receive attention from
internet strangers, have goals they have to give up or struggle very hard to meet, deal with frustration from family members and
friends in regards to their own struggles in
coping with a loved one with chronic illiness and being depressed is normal when you look around a compare yourself to someone
who is healthy.
Jaquie lives in a sitcom type of chronic illness world where even though she supposedly struggles, everything is ideal and perfect. She's a horrible "advocate" for anything.
Sorry for being so long winded…
I haven't seen the video, but I actually think it makes more sense to eat two bites of your SO's plate than order your own, if that's really all you are going to eat. I feel most of the time she does
order her own. Sometimes to eat "more than she thought she could" because since her feeding tube she is mysteriously having a lot of "good days, GI-wise", but sometimes she just eats two bites and leaves it at that. Even if she gets a doggy bag and lets Judd eat leftovers the next day, it's still a waste of money to order food in a restaurant and not eat it. And I'm pretty sure that despite her insisting they never waste food, Judd doesn't always want
Not only does she have viewers, she even has her own fan base. I haven't seen any of her most recent videos as I find hers very hard to watch (let's be honest, as annoying as Jaquie is, she does
know how to edit a video, while Janiece has no friggin' idea). Are her fans still sending them stuff for her dogs? I don't get it. I mean, I get that animal lovers want to do something nice for a pet sometimes. I once got a very cute home made cat toy from someone I knew strictly online because I was talking about a problem I had with my cat and she thought it might help. That was just nice. But having strangers sent you stuff every day? Making an Amazon wish list and putting expensive toys on it? It's weird and creepy. Not to mention greedy. If for some weird reason multiple people whom I did not know would want to sent me stuff and I received packages basically every day, I would be SO
weirded out by that. I think I'd be afraid to tell people about it.
So.. does it pay well, being an interpreter?
Just kidding, I think that could be a good translation. But as you said: it's hard to say for sure. I think it's also possible that someone would be able to see that her drama is mostly short-lived, she gets always the high-end treatments and goes to a lot of doctors (and a different one if the first one didn't indulge her) without seeing the extent of her lies. It's possible. I just don't know.
Amen to your perfect response.
And now she is going to call about the Smart Drive so she can do even less–all she has to do is steer. Steer where? Up and down the hall? She can't drive, can't lift it in and out of the house, etc.
As for her eating others' food, she could get a kid's meal (and eat it in her kiddie booster seat)and let them enjoy their own instead of always making everything about her. No worries about it being a waste of money–apparently money is no object for ANYTHING she wants.
OK, if you are sitting down, below is a link that shows how much Jaquie makes from You Tube. The first is the link and the second is her YT URL number. Try not to shit your pants.https://influencermarketinghub.com/youtube-money-calculator/
YouTube Video URL: UCKaX0dQwEUgTafzCZ2yEjUQ
Janiece's YT URL: UCgX3KpWwWabNKiuLdqE4uUw
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Social Blade shows her as making a lot less. Is there a way to determine which one is most accurate?
Andif that isn't enough, here is her Instagram income:https://influencermarketinghub.com/instagram-money-calculator/
Don't forget helper_dog_harlow
If that calculator is accurate, Harlow's is a lot more.
Pretty spot on. If Jaq sees it, I expect she'll do a blog all about her headphones and start having a lot of trouble interacting in public for some reason.
(my sister has what we call facetious disorder, we expect because when I was little I had to run around in a back brace and see doctors all the time, so she got a little neglected. I have my own theory why Jacqui is how she is.
It is why I come to this forum, because sometimes I just need to go OKAY! Other people deal with this, too!) (that makes me sound like an arsehole, I know.)
Revisited this comment from her and I have to say I would doubt she even received any OT for her autism. Wasn't she diagnosed as an adult? I presume she would claim getting OT for her claimed sensory issues - it can be difficult getting insurance to cover OT for kids and OTs tend to be in shorter supply (the company I work for always has a waiting list for clients seeking OT). OTs that work with adults tend to have a different focus than the ones that work with kids so it would be even more work to find an OT that works with an adult on autism related issues. I am sure its possible especially with daddy's money but I doubt it. (Since any sensory related autism issues would be present as a child and not just magically appear in adulthood).
And she doesn't mention any speech tx, which would probably be easier to get and focus more on social issues that an adult with autism might encounter.
There really is no reason/benefit to an adult being diagnosed with autism except to help them understand why certain things may be difficult for them. Seeing as Jaquie does nothing all day and seems to interact with her small circle of helper humans just fine the diagnosis is just another fun thing for the list.
If she is autistic, it wouldn't surprise me if she was diagnosed so late. At least in the UK girls are way underdiagnosed compared to boys because the way autism presents is different between the genders and a lot of what parents and teachers - the people who will notice and suggest evaluation - think of as autistic traits are really male autistic traits.
The thing that makes me think she has it and has had OT for it is that grating "thanks babe" thing she does while being especially demanding. It's like someone told her the socially correct thing to do is to thank them when they do something for you… and she interpreted it as long as she insincerely says thanks, she's in the clear to do whatever she wants.
I don't think you can diagnose autism via a highly-produced YT video. But what I do know is that Little Girl Jaquie is slowly replacing Grown-Up Jaquie in her YT videos, and I can't tell if she is doing the thing that young 20-somethings sometimes do to garner attention from their boyfriends/husbands or if it's really about autism. If it is about autism, she has given herself permission to stop trying to grow up.
Contrast this video to any recent video. Little Girl Jaquie has taken over the vlog and has become a video star over the past 10 months. To make space for Little Girl Jaquie, Grown-Up Jaquie has had to give up driving (she drove the first time her first feeding tube clogged, so it hasn't been that long), dress Little Girl Jaquie only in v-neck t-shirts and leggings (someone here even calls them her toddler clothes), pout regularly around Judd and Janiece and provide obstinate faces when it suits her mood, request more often than normal that her parents play games [that they played when she was a child] in the car and at home, delight over a children's plate (and loudly explain that she won't eat foods that she likes if they are touching foods she doesn't like), order milk instead of tea or something age-appropriate at a restaurant, gush about the pinkness of her wheelchair that someone calls her Barbie cart, use headphones for noise when she remembers, eat foods that little kids eat (cookie cereal, chocolate milk, mac & cheese, white rice, mashed potatoes, and smoothies purchased at a smoothie place, not made in her kitchen) and pretend to love Disney.
Regarding Disney, neither Little Girl nor Grown-Up Jaquie appear to have no real interest in it. Her videos at Disney feature training Harlow, mobility challenges in her chair/with Harlow, and food, etc. It's never about Disney fun. Little Girl Jaquie will occasionally appear to discuss food, I mean churros and hating Dole whips.
Grown-up Jaquie is very task-oriented and gets things done. If she worked as your administrative assistant, the office would be spotless, your task list done, all of your appointments made, calendared, and confirmed. She runs a YT channel, several Instagram accounts, sells T-shirts, manages a Patreon page and the communication that it requires; she makes all of her own doctor's appointments, deals with insurance, works out things like their budget, financing for their bed, orders the groceries online; she manages her feeding tube and mega deliveries of medical supplies, accesses her own port (let's face it, she's articulate enough that her primary doctor follows her instructions); trains Harlow; learned how to post videos to sites like junkmedia.com that will sell licenses the videos so she can make additional money.
She is a savvy and shrewd business woman who takes care of a very real business agenda.
Eventually she will turn 27 and realize it's more fun to be a woman and then people will be confused when she starts getting angry because everyone treats her like a child.
I just have one question- we know she does all this. But how does she keep track of all this but claims she can't follow along with one of Judd's movies he has to watch alone?
I suppose it's quite normal and common to have a childish side- who likes to reminisce and still has guilty pleasures, like a man who likes to play lego or drive remote control cars with his kids, or a woman who endulges in Christmas decorations etc…?
Jaquie has two polar opposite sides though- she seems to have a never ending supply of mental energy, which is impossible for anyone with as many chronic illnesses as her, who claims to be so sick (all the time). She lives an extremely high maintenance existence and seems to have an alter ego as a chronically ill child? Sorry if my interpretation is off. But it really points towards an underlying personality disorder rather than autism, jmo.
Did you ever do any profiling work? (I think it's good!)
I have seen that video before, but not recently. Just look at the start of the video - only her introduction. Her demeanor is SO different if you compare it with her more recent 'sick-face' videos. It's almost a different person.>>432633
The personality disorder that is imo most likely to be misdiagnosed as autism is schizoid personality disorder. (OK, and avoidant, maybe?) And to be honest that's not an unlikely candidate in Jaquies case. The personality disorder that correlates most with factitious disorder is borderline of course, but that's not what Jaquie shows us. For one thing, she is way too happy with her life. Of course narcissistic PD has been mentioned and is a possibility, but based on what we have seen thus far, I would lean more towards schizoid with narcissistic tendencies than outright narcissistic PD.
I won't go into it too deep, but it is possible to see the way she uses her illnesses as part of the phantasy life that is often seen in SPD. Her relationships with health professionals may be a ‘safe’ substitute for real friendships and intimacy: it enables her to ineract with others in a way that never gets too personal and is more factual-based. Plus, it is all about her and she doesn't have to listen to their personal story or factor in their feelings.
SPD would also explain her flat affect. This is also the reason why I don't see her as a someone with true narcissitic PD: someone with SPD will rarely get angry, even when directly provoked. A narcissist has more inner turmoil and has strong emotions but won't always express them. They tend to be either very jaleous of others or think others are jaleous of them. Or both. People with SPD merely lack strong emotions. They are not sensitive to critism, as opposed to your typical narcissist who tends to be very
sensitive to it but just tries not to show it. People with SPD often do have narcissistic tendencies though: they typically are not interested in what someone else has to tell, but would like to skip forward to what they
want to talk about.
I’m not even saying I think she has SPD, I just think she could have. I also think it fits better than ASD, because it explains how she can have ‘autism-like’ symptoms and at the same time have high executive function that allows her to be this business-woman. People with SPD can be very good and effective in what they do, as long as they can work alone.
She would not be a typical case though. Her child-like behaviour is still a bit odd, although it might fit into the ‘phantasy life’ that SPD patients often have that in a sense replaces the real world and real relationships. Much like her medical obsession and the relationships with her caregivers.
I'm interested in what others think about it, though.
I have never paid attention to Judd's movie choices, but I'll go out on a limb and guess that some of these films lack plot lines that follow from beginning to end. In other words, if a person is not familiar with the entire franchise of whatever he's watching, figuring out the plot can be ridiculously difficult.
I don't know anything about personality disorder, so you'll have to say more, but I do know about 20-something year-old girls. I am definitely not one of them (old enough to have parented one at this point), but I work with this age group regularly and there's a cadre of them that like to play little girl and let their boyfriends take care of them.
In my experience, they usually grow out of it, and often, the boyfriend, who was more mature to begin with, is rightfully confused. All he was doing was what his mamma taught him to do–take care of/protect his girlfriend–and suddenly she's complaining that he's over-protective and smothering her.
But, two weeks ago, the girl wouldn't walk from class to the dorm alone and now she thinks it's controlling that he brings her Starbucks and waits for her class to dismiss.
So, that's my observation, but I'm not a psychologist.
These are interesting points about personality disorder. I'm not a psychologist, but narcissism is a word that floats around sometimes when she's hell-bent on talking about her issues like the professional who can't stop talking shop at the end of the day. People want her to, but she's just too focused (like a lawyer in the middle of a trial). >>432604
No profiling work…just a lot of experience with 20-somethings.
How does she know it's kinked? Did she already have imaging? It could just be blocked. That happens a lot sooner if you don't use it, so her not running it at night might explain that.
don't understand how her fans, Judd and her parents don't see through this. If she starts starving herself again, I mean. It's SO obvious. But who knows, maybe she'll even get them to do the surgery to seperate her tubes as an emergency procedure. And of course, she'll have to get ketamine again.
Those wounds on Judd's wrist >>426074
still have not healed, and the surrounding area appears inflamed.
I forgot to include the title to the vlog, which explains it alllll: "ER Trip: My Feeding Tube Kinked AGAIN
So, yes, she's had imaging, and it's kinked.
That person is smart… veiling the comment with lots of words to get a good point across - Jaquie has enough money and doesn't have to work, so she is not depressed.
When someone is alone with no money and a chronic illness, they get severe situational depression as a result of the anxiety from the situation.
When someone has their whole world catering to their needs, they feel secure and therefore don't have to have anxiety, thus preventing the situational depression.
Clinical depression is a whole other thing.
Her J-tube is blocked. She vents out of the G-port. So no, that's not an explanation. Besides, apparently she had imaging and it IS kinked.
Which is strange though, because her specific tube has anti-kink technology.
Is it possible for her to kink it deliberately?
I can't help but notice that this happened when Jaquie was scheduled to spend the day alone with Judd's mom. Suspicious timing, to say the least.
I wonder if she's checking the water level in the balloon? OR, here's another thought. We know from the vlogs that Dr. Doesn't-Know did not place the tube correctly and no no one told her to check the water level. Based on the amount of water she is supposed to use, it's the largest size tube for her brand.
So, is it possible that the tube is too large? If too large, the tube would spin even when the balloon is full, causing the anti-kink tech to kink.
And, Dr. Doesn't-Know already said the placement isn't good. Let's hope his colleague, Dr. Actually Knows will do the surgery this time.
I am so sorry, anon, but your words of common sense are not compatible with the magic powers of this feeding tube.
It is absolutely an emergency. Jacquie CAN'T get her usual oral intake if she doesn't have her tube working. Don't ask why, though. It's just bullshit.
Looking forward to Jacquie starving herself. I'm betting on her showing us one of those KF drinks that have been collecting dust in the medical fridge.
She is completely one track-minded. She can apparently only eat orally if she knows the tube is patent, whether she uses it or not. She shut down orally last time it kinked too. The location of her tube has been a big disappointment to her from the get-go—she originally thought she was getting a cute Mic-Key button in her lower abdomen like Mary–instead Dr. Doesn't-Know (love that!) placed it high under her ribs and with her adjustable bed, she probably bends just below it, making it prone to kink.
Once again, Judd's visit with his family got cut short. Emergency xrays? On a Sunday? When she can eat cookies and drink chocolate milk? Now Judd might have to take her to a restaurant b/c she can magically eat off his plate but not order her own.
Double tubes finally moved to the top of her wish list!
Sidenote: Mary just got approved for a Dexcom. Kinked GJ tube + inability to eat orally = low blood sugars/Dexcom trial. Just saying…
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What's going on with her nose here?
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Looks like she never officially changed her last name. Seems unlike her.
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Judd has a giant lump on his arm.. wonder if he has MRSA from her
You're right about girls not being diagnosed in childhood as often. I was marked out as the "naughty" child, but I was undiagnosed until I was in college.
I'm willing to give Jaquie a pass on this, maybe she is actually autistic. Albeit very mildly, and knowing full well that she's exaggerating a lot of it (like the sensory issues - magic disappearing/reappearing headphones).
Ew, Judd’s got a creepy pedo ‘stache.
And jaquie’s an adult toddler…. Coincidence??
(Sage for total speculation)
For one thing, that chair is way too big for her. And another thing, females tend to have bigger hips. It's not too odd that a big guy can sit in the chair of a smaller female. Although in Jaquies case, her 'custom' chair has a very
bad fit. It's far too wide.
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One of the only comments that she's replied to is about how someone else used to have problems with their tube kinking too, and guess what comes up…
I don't. As an anaesthetic it's not given frequently (like a recreational habit) and it's not physically addictive like opiates, or benzos.
As for the psychological addiction side, nobody likes being in pain all the time…. but she isn't. kek.
think she enjoys the "freedom" of being able to act like a child while it wears off.
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Here’s the tube that’s for the separate g and j (and just g or just j). You just stick it in and inflate the balloon, no X-ray or scope needed since there’s nothing to get in the right and wrong place. So switching it is easier, but twice the maintenance and twice the holes you need in your abdomen, which is twice the risk of complications of infection and stoma problems. That’s why combo tubes are usually suggested for eds patients, unless there’s a really good reason why a GJ wouldn’t work.
With the amount she goes on about pain then potentially she'd get daily pain meds BUT a lot of her reported pain is around 'subluxations' and the recommended treatment is phsyio, generally where you actually SEE your physio and if it is avaliable then hydrotherapy is great.
Additionally, contrary to what cows will have you beleive subluxations and dislocations are far LESS painful for us because everything is loose. You're literally talking a few days of an OTC painkiller with an OTC anti inflamatory.
Obviously there are people who dislocate at every movement but that is a seperate issue.
Also most people with EDS avoid surgery. For instance if your MVP isn't actually causing problems they don't operate on it. Shoulder completely unstable? It is unlikely surgery will result in improvement and that healing will never properly occur. Depends on the orthopod obviously.
Jackie is just a load of bullshit.
This is just a loaf of crap, this is wh in the UK you only get a PICC (even as a child) if you are having a LOT of access. NJ/G tubes are placed much more commonly and it usually is several years until something else is discussed (sometimes less if you're working or somthing where having such a visible health problem will impact on your career). Any known exceptions to this are pretty obvious uk cows discussed in other threads.
It's obnoxious. Sage you really fucking non contributions. >>433405
SAGE and cool it with the samefagging. You're essentially spamming this thread with one line posts.
It literally is fucking big deal, it's an actual rule here. Read. Them.
Now can we all move the fuck on to some milk?
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I bet this comment killed her.
Ironic since you're a non contributor who didn't sage their post>>433473
So is yours. That post is way more valid than yours anyway
What the fuck are you going on about? You realize there are a lot of different anons on here, right? My posts are all saged so seriously fuck off newfags >>433460
Any cardiologist is going to check their patients for MVP. Its a common condition that's diagnosed with an Echo, nothing special.
It's also not typically a big deal unless you have regurgitation associated with it as well.
She's on Xyrem. That's
why she can't use opioids.
I just checked the contraindications and as well as opioids you're also not meant to take Xyrem if you're epileptic (which Jacquie supposedly is).
But Ketamine is ALSO a CNS depressant therefore should also be off limits. It's all a bit suspect.
Well, I fell down the K hole and couldn't walk for 3 hours.
But um, clinically? I've never had it in a prescribed setting so I don't know. Xyrem is for her narcolepsy not supposed POTS.
It is the drug of choice for people in traumatic shock who are at risk of hypotension. Low blood pressure is harmful in people with severe head injury and ketamine is least likely to cause low blood pressure, often even able to prevent it.
The effect of ketamine on the respiratory and circulatory systems is different from that of other anesthetics. When used at anesthetic doses, it will usually stimulate rather than depress the circulatory system.>>433611
Its psychoactive effects are highly dose-dependent.
People can change names regardless of their immigration statues once married, that's got nothing to do with a woman taking her husband's name.
As someone with chronic disorder I decided to not change my name when I had the opportunity to do so - changing the names with all my doctors/surgeons seemed like a major hassle, potentially leading to mix ups that can affect my care.
Of course with everyone having EMRs, that's less of a worry but just 5 years ago folks still had paper charting systems.
Sage for blogging
Today, Jaquie is trying to make a decision about whether to get two tubes. Her GI says if she keeps her current GJ tube, it will kink again because her stoma had to be placed in a weird location because of her weird anatomy. GI doc says she needs to have two tubes. But, she doesn't know if she wants two tubes.
Isn't the decision fairly clear-cut or am I a dolt? Would her doctor really put in another GJ tube if it's only going to kink again? Or, can the doc use this stoma to put in only a feeding tube (no venting) that would not kink?
She goes on and on about how this is a personal decision for her to make.
I thought feeding tubes were life-sustaining (unlike, say an eyebrow lift) so wouldn't the kind of tube(s) she receives be determined by the U.S. expectations for "standard of care," not standard of patient desires?
On an odd note, she's not even flipping out at all about malnutrition like she was last time. She's not doing all the things–preserving energy. Just said at the end she's fine and the tube will be replaced in a few days.
(medfag)The Ketamine she gets has been used more for children (perfect for this girl-child) for procedural sedation. With it the patient is awake but drowsy and the effect of the Ketamine is that it lightly sedates and lowers pain receptors during the procedure and there is no memory of it afterwards. The biggest side effects are hypersalivating (too much spit), mild hallucinations, nausea and mild agitation while it is quickly wearing off. That is why she also gets Versed which alleviates the agitation and gives a smooth ride during and after the procedure. It is monitored procedural sedation, not general anesthesia, in which she would need respiratory assistance. She just has a prolonged pain relief from the small dose of Ketamine, which is a very individual response. Ketamine and Versed are given in VERY small doses and are short-acting so they wear off quickly. A larger dose could affect the respiratory system and in rare cases can cause a seizure. Using light sedation for these minor procedures is more to lessen anxiety because a tube change is really a minor out-patient-office procedure. The main concern with a j-tube is imaging to make sure it is in the jejunum and not coiled in the stomach.
Ketamine has been used in vet surgeries and as an illegal street drug is known as Cat Valium or Special K–and can be fatal when mixed with barbituates or alcohol or alone in larger doses.
Apologies if this is too much or unwanted medfag information for y'all.
If this GI doc is in it for her insurance money, he might push for the second tube. Or if he is ethical, he might still push for it just to stop her from frickin' calling his office every other day! If both docs said no, she would shop until she finds one who will oblige her.
She just wants a j button low in the belly like Mary Frey's—hers is a very short tube straight into the jejunum and she can change it herself at home and because it is so short it doesn't kink. The G tube would probably stay where it is because she just uses it to drain her semi-digested 'I can't eat' food from her stomach.
strange. In todays vlog she even said that "that (support) is what any chronic illness warrior
or anyone in a difficult situation needs: support" (and not suggestions 'do this or do that', or 'why not try this, etc.) Ehm.. no? If I'm in a difficult situation, I like to get input from family members, friends, heck sometimes even people online (depending on the situation) as to what I should do about it. That's just common sense. I agree that with medical stuff the suggestions can become a bit wild (especially from people who are into alternative/holistic treatments who will basically tell you if you're not willing to eat horse manure, you don't want
to get better) but in that doesn't mean that sometimes people can't have good ideas. And when it comes to other situations, I sure as H want suggestions from others.>>433846
She says that this time her G-port is also not working right. Which a) I don't think makes sense with the explanation she gave for why the kinks happen and b) would mean that this kink would be an even bigger disaster than her last one, because back then she could eat more because because she could stil 'vent' (which according to her explanation, means she can eat more then before she had her tube).
According to Jaquie - so take it with a big grain of salt - her GI thought she might have GP. She went to mayo for tests, but the mayo dr said she didn't have GP and suggested something else since her problem seemed to be that she was vomiting right after eating. He gave her some exercises she could do at home to try to see if they would help her. (I don't think she ever mentioned actually trying the exercises.) However the mayo dr had mentioned in his notes at some point that GP was a possibility before he settled on it not being GP.
For whatever reason her GI disagreed with the mayo dr and stuck with the GP diagnosis, Jaquie obviously preferred the GP diagnosis so she went with that. She used the mayo dr's notes suggesting possible GP before he changed his mind as further proof that it was GP, the mayo dr was just 'not a good fit for her'.
As for how she got her feeding tube so fast? She was 'severely malnourished' before they put it in, aka refusing to eat. I think she used her cyclic vomiting situation to convince the dr not to try a tube down her throat she'd just barf up.
Got to hand it to her, Jaquie's slick at getting what she wants. Imagine what she could accomplish if she used her powers of manipulation to do something useful with her life!
You got some facts wrong there. Doesn't matter much for the outcome, but still. I sorted it all out in one of the previous threads. I'll either put a link or repost in a while.
-After they moved, she went to a new GI for her CVS. That GI wanted to test her for GP as well, to 'cover all the bases". Jaquie thought she didn't have it, but that the test couldn't hurt.
-Test came back borderline slow, so local GI dx'd GP.
-She went to Mayo for testing and among others saw a GI. GI didn't agree with the GP dx because of her symptoms and thought she had decreased gastric accomodation. Jaq would go back to Mayo to see a physio to learn special breathing exercises.
-Local GI said she did have GP, although it was a mild case. Also said decreased accomodation could also be a factor.
-Jaq never went back to the Mayo GI (so she never got those exercises) and the local GI also never looked further into it.
-After a little under a year, Jaq went back saying her GP got worse and she could hardly eat anything. They were going to put in an NJ, but if we believe Jaq's account, another hospital GI told them that as she needed a more permanent solution, they'd better put in a permanent tube right away.
I thought it was decreased gastric emptying, meaning her stomach is not digesting the food at an appropriate rate. Is that right? I don't fully understand the insanity of all of J's medical conditions. kek
I do know that I have a coworker who has GP IRL and she never had a feeding tube of any kind. I felt so bad for her because her life was miserable for decades. She was very malnourished, had major problems with reflux, always was struggling with what she could eat and what would make her sick. It was just horrible. She just now got surgery in her late 40's to fix it. I am not 100% sure what the surgery type was, but I find it extremely interesting that she never had a feeding tube to treat her GP. Maybe some medfags can weigh in on why the feeding tube seems to be the go-to treatment for GP, but in this situation she never had one.
Wait, why wouldn’t she just take a PPI if stomach acid is a problem? It’s so fishy. If I remember correctly, GERD doesn’t cause but is cormorbid with GP? They exacerbate the symptoms of each other is what I mean to say. If her GES showed a barely-there 14% and she’s worried about stomach acid, you literally just take the Prevacid and go about your life with some dietary changes. If low doses don’t work, you bump it up until it does.
My apologies if she is on medication for it, it’s hard to keep up with her and all the other munchie’s medications.
It's not the pH that's the problem it's there being anything in her stomach. Gastric juices (mm, delicious) sitting in the stomach cause problems for people with severe gastraparesis.
None of this applies to J though because of the aforementioned 14% remaining after 4 hours.
Samefag and blogging, but I had debilitating vomiting for years. Like, on a single walk across campus I would have to stop three times to puke in three different buildings. It took one upper endoscopy, a completely typical GERD diagnosis, and 60 mg of Prevacid a day and I haven’t had a problem with it since. I did get the GES and I too had very mild GP, but it wasn’t really a factor. As long as their was acid in my stomach to destroy my esophagus, my body wanted it out by way of vomiting. No acid - no problem.
I know it’s probably getting a little too personal, but the fact that she claims the acid as the offending substance and cause of her nausea and vomiting, but hasn’t mentioned an acid reducer to my knowledge. The fact that we KNOW she only has very mild GP that wouldn’t account for her supposed vomiting (that isn’t just purging)… It’s just so similar to what I went through (sans the munchie bullshit) that I have to question it.