Because of course she found one. If this was just the story of a girl who had FND and got appropriate care for it, there wouldn't be much to talk about. When we left off, Hopkins had refused to see her and referred her back to her old neurology specialist, who she refers to as “the giant poopyhead" because he stopped believing her. Enter the quack. Mommy has found her a new neurologist in Morgantown, WV who says he’d look into doing botox for her arm. She has her first appointment with this miracle worker in March 2015. He tells her the other doctors who diagnosed her with FND were full of crap. This was clearly for real epilepsy and dystonia. Her eyes getting “stuck dilated” is related to her gimpy leg and her inability to eat and her neuropathy. He thinks there’s an underlying autoimmune condition causing everything. She’ll be getting nerve studies and an EEG, and he has a plan if it’s what he suspects it is. It was real guys. It was all real!
On Easter she’s in ICU for more seizures.
She’s started on another benzo, Onfi. This one Elizabeth’s daughter was on for years and was the one she had terrible WDs from when it was stopped for a period. Jessica had a new EEG and no one at the new doctor’s office was mean to her or said she was faking this time.
It appears she can do needlework, which involves a lot of fiddly motions and usually reading of very small patterns (and just in personal experience, a lot of manipulating the hoop with your non-dominant hand, although I suppose if you really couldn't use that hand you could adapt to a fixed hoop position.) She is also doing a drawing project she calls Art for the People, which is just doing doodles and giving them away to strangers who might be cheered up by them. Remember that on insta she claims that at some point she stopped being able to do all this, and at this point we’re supposed to believe that she’s doing it all one-handed while her other is contracted up to her chest. EDIT: whoops I can't read, she said she didn't make this.
She's now claiming her hand shakes when she does the etch-a-sketch but she's adapted.
She’s also posting new drawings on Facebook. They’re more cartoony than her old flower drawings but still have nice clean lines, shading, lettering. . .
She finally gets the EMG. Her nerve conductors on the left side aren’t working so well and she’s diagnosed chronic inflammatory demyelinating polyneuropathy (the same shit our friend Shelby Lynn Logsdon claims to have!), that the recent EEG showed left temporal lobe seizures, and that her dystonia is all related to this. She’ll be getting IVIG to slow the progression. Wow. I guess she’s really not faking then. Yanno, maybe she has both seizures and PNES. Katie Stanina has both, and the PNES is part of the reason her real epilepsy was ignored for so long. They even stuck poor Katie in a psych ward because they thought she was having temper tantrums and whacking her head on shit on purpose.
Her brother graduates high school while she sits home sewing dresses for her dolly. Not sure if her brother went to a regular school or if this was some kind of homeschool group’s ceremony.
Here's where she hand sewed an ugly doll dress.
She’s getting IVIG. She says a dose is over 1000 donors but she only gets half an adult dose because she’s so tiny. She has her first infusion and doesn’t have a bad reaction to it.
In June she says she had seizures bad enough that she had to be bagged and transferred to ICU at another hospital. There she has a feeding tube placed and says that since October she’s been unable to chew or swallow. Remember when the reason she couldn’t eat was “tongue spasms” from her seizure medication that were fixed by the L-dopa? Now it’s dysphagia, she’s been mashing her food with oil to a smooth consistency for years and she chokes when she tries to drink, but she’s never thought to mention this before now because she was embarrassed by it and thought she was managing. She failed the swallow test and could only take in ¼ teaspoon of honey consistency over a long time when she tried. Yah that sounds like something you could manage for months. She’ll be tubed for life. She’s in the worst surgery pain she’s ever had (also maybe the only surgery pain she’s ever had). But she learned her new abdominal noodle serves as a drug delivery system! How nifty!
The neurologist is already talking about a VNS or brain surgery. I wanna say that one of the things I learned from Katie Stanina is that there’s a lot of trial and error when it comes to epilepsy medication. Jessie has been on valproic acid and benzos for years but every time a doctor tries to change her medication to get better control of her alleged dozens of daily seizures, her parents decide they know better. So far we know about a time when a hospital put her on keppra instead and they took her out AMA, and at home when another doctor tried to add lamictal at a low dose they told her to stop taking it. The only drugs Mommy and Daddy fight for her to stay on are benzos. Generously this is because she’s an actual addict like U of Maryland thought and they’re mistaking withdrawal shakes for seizures and calm after a dose as seizure control. Less generously, she’s an unpleasant little viper when she doesn’t get her fix or they want a happy clappy retard to show off for all the jesus people and benzos help this. But instead of insisting on trialing new meds or adjusting her dose or even just getting her off the benzos to see what her baseline is, this guy’s just gonna sign her up for more surgery.
She goes to someone else's church with Daddy and makes a scene at communion.
Amy’s mom sends her a new outfit for her dolly. The pink thing behind her is a Yogibo Support which is an oversized u-shaped beanbag pillow that goes for $100+ and is not sold as a positioning device but just as like, a general back rest for gaming or reading in bed. In the comments, Amy’s parents talk about how well she’s doing with her g-tube. Amy really couldn’t chew or swallow at the end of her life.
They’ve had to pay out of pocket for her tube feeds because insurance wouldn’t cover it unless she actually couldn’t swallow, but she really can’t and might get staved to death! They get it sorted and she’ll be getting a refund.
Gib marijuana. Kids these days don’t even know how to get a weed man, I tell u whut.
She’s now in PT and OT again and learning how to do things without her gimpy left hand. She says she’s motivated to learn this so she can be more independent and doesn’t care if her adaptations look weird to normies. She’s rigged a support system out of pool noodles so she can sit in the tub and wash her own hair now. But she also knows her limits. Mommy has to put on her shoes for her and set up her tube feeds. She claims her heart rate and oxygen drop to ridiculous lows while she sleeps and she doesn’t know why. The neurologist thinks it might be seizures. What she’s describing is common in epilepsy and one of the probable reasons for Sudden Unexplained Death in Epilepsy. It’s also common in people who pop benzos like they’re M&Ms.
Her tube has granulation tissue and it NEEDS to be fixed.
She goes to get it fixed and while she’s in the hospital being fed by mommy they have protective services come up and have a lil’ looky-loo and a chat. This was prompted by her mother speaking for her in medical appointments, but she says she has given Mommy a piece of paper saying she’s allowed to speak on her behalf. That’s not a red flag or nothin'.
Her stomach now “prefers not to empty” and gets so full Mommy can’t even put the benzos in her teeny tiny tummy! She has “explosive proof” of this, which sounds like when they open her tube valve the formula comes spraying back out, which you can achieve by flexing your abdominal muscles hard enough (you can also flex your abs in certain ways to make swallowed food come back up as in Rumination Syndrome common in learning disabled people or “hands free purging” in seasoned bulimics.) Before tubequest she would eat an apple for breakfast and nothing until dinner and still feel full, but no one believed her. They thought she was starving herself. She is only up to 1/5th of her calorie goal with the tube and doesn’t know how much more she’s willing to take because it hurts too badly. If she has it removed, it means death. She’s being evaluated for the VNS now.
Her tube is working better now after an adjustment and she has a pump. She can’t really transfer in and out of her chair anymore but with great effort she gets by.
They're discussing a VNS.
Her new custom fitted wheelchair gets there. It’s a tilt-in-space Quickie.
She has a spinal tap for unspecified reasons. Sometimes her tube works, sometimes she drains it all, but she’s refusing TPN ostensibly because of the infection risk.
She takes a month-long break from blogging and comes back with an explanation. She was in ICU nearly every month losing functions. A doctor told her a procedure would be painless but she woke up in the worst pain of her life and the pain meds gave her a bad trip. She flipped the bad bird finger at her tube and called a doctor a poopyhead and another bad name that means he has no Daddy, but not to his face, only when she’s home. Officially claiming gastroparesis. Her feeding tube leaks, smells bad, and grosses her out. But she gets her VNS soon.
She’s taken to see a neurosurgeon at a bad hospital she doesn’t like, where Mommy and Daddy both sit with her to ask questions to the doctor. The doctor asks if Jessie could ever walk and she confirms she could. The doctor then asks Mommy if thats true and Jessie is offended because she is an adult. Ultimately the surgeon refuses the surgery and it sounds like it’s because he doesn’t trust her new neurologist’s word over the neurology team at the hospital. This is one of the hospitals that already said she has FND and probably have some notes in there about her family dynamic being insane. It’s not fair! She doesn’t
want surgery! She just wants hope but the doctors are so afraid!
Speaking of the new neurologist, he’s been giving her botox and it’s working! Her contracture opens right away and she can even give him a high five. I was under the impression that it takes a while to see results after treatment and once it does set in you end up with like selective paralysis of the nerves or something, not an instant return to normal function.
She found a neurosurgeon willing to give her a VNS after the last one refused.
The surgery is done. Don’t for a second think this is going to be a miracle cure and she’ll suddenly go back to the old Jessie you knew because that’s never going to happen. She has much more on her plate than just epilepsy now, like a nerve disease this won’t fix. She needs to sleep with oxygen. She claims people come to her red-faced and angry to complain about her blog and she knows this post will have the same response. She just seems like she’s always getting in bizarre fights with people over meaningless shit she posts on the internet. IDK if shes making it up entirely or blowing normal interactions into giant fiascos because she’s too awkward to understand adult interactions or what.
Her VNS is activated and adjusted. It does not help her get off oxygen. She wants every doctor who told her to stop this shit and grow up to know that they’re just angry and mean.
She gets a wig but doesn’t say why, just that hats are more comfortable.
In April she decides to kill off her blog. It’s getting too hard to write. She can’t even remember how to draw anymore. The memories of her art skills have just slipped away. She’s tired and the seizures are destroying what’s left of her.
She’s still updating facebook but it’s mostly just profile pics. She’s taken to wearing baseball caps. The girl with the dangerhair is her sister Katie, the one who’s only 2 years younger than her. So Kelsey grew out of her gender phase but Katie got married and immediately grew into this version of the Fuck You Mom and Dad.
And we are descending full force into Gypsy Rose territory with the awful haircut and the increasingly inhuman looking smile.
