She gets her GJ surgery and once again, other girls who have had this same surgery with this same doctor are in the comments.
Just in time for another awareness day. She’s in love with her new tube even though it already is giving her problems. She’s just glad to not have the nose hose everyone stared at that made her cry herself to sleep all the time. Remember that Natalia can't eat while you get up to eat a snack.
She goes to pride, drag queens still can’t not be creepy to young people. #genderfluid.
At this point her posting is really sporadic and she says she mostly moved to Snapchat so I’m going to do something I almost never do and scan through her saved stories. Here’s one from this era where she's calling herself Nate and saying she's also "transmasculine." These font choices are so accessible thank u. Here she says her CRPS is now “stage three full body” so I guess that R part is no longer a thing. She has both osteoporosis and osteopenia, slow transit constipation (lol drugs), and motor ocular dysfunction, a disorder where the eyes have trouble tracking which makes reading difficult. She also tells us the heart defect she had repaired was an atrial septum defect. Super super common, often close on their own during childhood and those that don’t usually cause no problems. A few rare types can be dangerous. We don’t ever learn what specific type she has or if it was actually one of the rare cases where it was causing problems but If I had to guess it was more that Natalia went from active kiddo to sitting in hospital beds all day drowning in anxiety and this heart thing was blamed for her somatic/deconditioning symptoms. As for the osteoporosis/osteopenia, yeah that’ll happen if you’re on steroids – she’s on Florinef for “POTS” – and never walk.
In May she goes to the sick kid prom again and wins all the prizes again.
You were not exactly diagnosed with EDS. A diagnosis mill rheum you traveled across the state to see said they thought you had it then the actual genetics department at the well-respected children’s hospital said no.
Another central line infection in June and another time she has to talk her mom into bringing her to the ED. Interesting use of scare quotes around discussion. Her line is infected with staph and yeast-colonized again. While hospitalized she has the same problems she did last time she had the line infection: her IVs keep infiltrating, her feeding tube breaks, etc. This time she also ends up with massive blood clots and has to be started on thinners. She gets a new central line and tube and is sent home on blood thinners. In an update she tells us her new central line is now bleeding uncontrollably and she’s been readmitted. Every photo here is just her cheesing with people who came to visit her in the hospital.
She doesn’t really update on that. She comes back in August to say she spent the last month in the hospital. She got more ketamine infusions from the 17th until the 21st when she started vomiting bile. They try to treat it at home, again with the implication that she thinks this is an emergency and mom is making her try to wait it out. She’s in intense pain and her doctors think she has a bowel obstruction. She’s told to go to the ER. It ends up not being an obstruction but a HIDA scan shows her gallbladder has completely stopped functioning. Doctors start her on short-term TPN after they can’t find a feed that works for her when she’s that sick and in that much pain. Always nice when a pain munchie has something genuinely painful happen for the first time.
Discharged in time for an anime con before surgery. She’s definitely gained a lot of weight and her legs are looking much less floppy. She crosses her ankles, leans forwards with her feet on the ground, and even sits on the pavement with no problems. She claims she can’t walk because of CRPS pain in her feet and lower legs.
Gallbladder removed as well as two severely damaged teeth. They take her off TPN and restart feeds. She claims incredible pain and nausea from running them but her doctors won’t let her change her rate. She wants the TPN back and is not making that a secret. She’s now claiming that her colon and bladder are also paralyzed. While she mentioned having things like bowel prep on hand for her totally-not-drug-related constipation, she’s never mentioned a urinary catheter.
It’s nerve-ember and she recounts the history of her disease in more detail. It was initially thought to be a sprain but then her hand got swollen, red, and ice cold to the touch. The first hand surgery was a biopsy for fasciitis after during the surgeon said it was CRPS and the biopsy had not been necessary. The photo of her holding the iPad shows that her hand actually was pretty swollen and painful looking at the time although how much of that was there
before she got a chunk of her hand cut out? Then there’s an interesting tidbit about how when she was hospitalized and put in OT she screamed so much from being measured that her mom took her to a pain doctor where she got an official CRPS diagnosis. For the first time she tells us the reason that she can’t walk is that after all the OT on her arm she was involved in an accident where a car t-boned her school bus directly at her seat doing 80+ miles per hour and she didn’t have time to brace herself, which she never mentioned before or after. needless to say I could not find any accident that matched her school district at the time, let alone a school bus being t-boned at suicide speed with students on board. She does prove her feet get swollen (check out the fluid roll above her big toe in the second pic) but a lot of things can cause this including sitting still in a wheelchair in a hot climate.
Hey speaking of her mom and pain meds, here’s a story where Natalia lets us know her mom administers her meds through either her feeding tube and/or her central line while she’s sleeping. Oh boy.
Also she’s still only going to school a few hours a day. These days she doesn’t even homebound. She just attends for three classes then goes home and sleeps off the drugs.
Another hospitalization. This time her mom notices her tube is leaking stomach acid and takes her to the ER where she immediately pukes with so much force that the balloon keeping her tube in place is pushed partially out through her stoma still inflated. Because she’s 17 and the children’s ward is full she’s bumped up to an adult unit for the first time and it’s traumatizing. They don’t have the right pediatric tube for her and when they try to place an NJ to at least get medication into her she screams in pain. A bed opens in Children’s so they bring her back there where she gets a new NJ placed under sedation. She’s then bumped back to adult because a kid with cancer actually needs that bed. For only the second time in her life she develops a fever and they determine that her central line has become dislodged and is now rubbing against the inside of a ventricle causing her heart to just stop. Don’t worry, they release her so she can go to an anime con before they readmit her to remove the central line. God I love it, she’s just old enough that I don’t have to feel like an asshole laughing at her but young enough to think “yeah my heart kept stopping but they said it was NBD and I should go to a con” is a reasonable story. She doesn’t really mention it but she got her TPN back thanks to this stunt. Also both her tubes came dislodged at the same time, how weird.
Next update she says the heart surgery was fine but she got a UTI afterwards. Her gastro wants to try a new pacemaker and more frequent tube changes to see if that helps. And her ketamine infusions are restarting. But oh, she posts a new account, chronic_cosplays.
The account actually started a year prior when it was just her spam account for posting “memes and gay shit.”
It’s mostly just anime sperging but cut through with her constant theme: she is awkward and can’t make friends because outside of this fairly recent anime interest, her only personality is illness.
In May she saw a dentist and had 12 cavities. Her dentist says she’s not taking care of her oral hygiene and her mom is furious that this is going to be expensive to fix but she says it’s just her diseases, honestly. I do wonder if it doesn’t have to do with her being drugged out of her gourd every day. The comments are fascinating.
As a genderspecial she cosplayed as boy characters for Holiday Matsuri but also wore her usual winged eyeliner, as all boys tend to do.
Then there’s this one where she’s a cheerleader with her belly out but at least she shows she has mild hypermobility in one elbow.
I don’t know what to tell you guys about this. I didn’t find this account on my first pass and my life was better for it. But now that I’ve seen it you have to share in my trauma.
When she’s with her nerd friends she basically gives up all pretense that there’s something wrong with her. She stays in the wheelchair for the most part but she also gets out of it for photoshoots including several where she’s crouching or kneeling, assumes all sorts of goofy positions, and basically acts like every other nerd there. After years of treating everyone as accessories to her illness, she now has friends who just like her for who she is.
In February she says she had to take a cosplay break for more ketamine treatments but then she’s right back to being goofy with her friends in costumes.
For rare disease day she says nothing on her main grid but on her cosplay page she tells us she has CRPS, dysautonomia, GP, EDS, MCAD, osteoporosis and mitochondiral disorder. Lol. There’s a geneticist formerly in Jacksonville, now in Palm Beach named Dr. Paldeep Atwal who specializes in diagnosing EDS and mitochondrial diseases based on your reported symptoms, even over telehealth without ever meeting you. His website even says that he doesn’t do genetic testing unless it’s necessary because he’s just so brilliant he can diagnose you without it. He’s the one who gave Jaquie her mitochondrial disease diagnosis (and also IIRC the first one to put EDS in her chart before she saw Trevino). So if Natalia is not just making it up on her side account for attention, then my guess is she’s seen yet another diagnosis mill. While she continues to claim osteoporosis she hasn’t brought up Mito again since this post.
Except in this one story post on her main insta where she’s also claiming mastocytosis. No mention of a bone marrow biopsy which is how that’s diagnosed.
Since we’re here anyway, here’s some more of her health Q&A story posts.
Here’s a more complete version of the injury that caused her problems: she was fucking around with her dad while watching an MMA match, went to play-kick him, he grabbed her by the leg and threw her off balance, and she landed on her hand. Mom ices it like a normal injury. The next day they go to Chuck E. Cheese’s where her hand swells up so her mom goes to the drug store and buys an OTC splint. The first time a doctor saw this injury was two days after she posted the “sprained my hand” pic, when her teachers saw how bad it was and had her sent home. ER told her to follow up with her PCP who referred her to pediatric sports medicine who called in rheumatology. Everyone was stumped by the fact that her hand was purple and ice cold and when she walked the arm just hung down limply like she had no use of it. Blood tests were normal, MRIs showed severe inflammation, biopsy for fasciitis was negative, surgeon says it’s CRPS and tells them to go to the pain clinic. Mom stays the course bringing her to OT as prescribed, but seeing Natalia in pain makes her change her mind and bring her to the pain clinic. Pain clinic immediately recognized it as CRPS and admitted her for the nerve block.
I’ll be honest, I rarely see the difference she’s expecting me to see but in this case I’m going to take her word that she really was having problems based on the response it got. After getting a nerve block she was able to complete an OT program and get back to life for a while.
And the GP story. She started with constipation and stomach aches as a kid. When she was 13 she started vomiting anything that wasn’t liquid but all the tests only showed mild dysmotility. An x-ray showed she was “literally full of shit” and that the constipation was why she couldn’t eat. That can’t have anything with the medications she’s on, I’m sure. The NG things I thought were manometry probes? Nope, they were trying to clean out her backed-up booty-chute with golytely without making her puke it all up. This allowed her to go out for dinner for one last time for her birthday. That night she got hospitalized for POTS and wouldn’t eat. The hospital thought she’s got an eating disorder and discharged her. She was sent to Arnold Palmer where she got another NG that I thought was esophageal manometry. That one was actually a dual manometry that tested both her rectum and her duodenum/pylorus with probes while she was given various things through the other tube. The fundus story just sounds like either a conversion disorder or something she’s doing on purpose.
And here’s a clear look at her teeth. They look more neglect/dry mouth/tartar issues than the bulimics with their see-through enamel eroded teeth we usually see here. Way more like Katie Stanina whose teeth went to shit from the induced coma and her epilepsy medications.
Back to main and now she’s proud to be disabled, transmasculine, genderfluid, bisexual girl in need of attention. Her pronoun pin says she uses he/him pronouns today. Oh gosh, how could I be so foolish. She has no eyeliner and an edgy side shave today, that means she is a real boy. Or I’m not supposed to assume her gender. Or something. Who knows?
July 5th we get a new medical update. She has a new tube placed under anesthesia so they can also do pyloric botox and an endoscopy at the same time. After that she’s puking up feeds nonstop so shes taken to the ER in Tampa with “another ileus.” So the first one was an obstruction? Or she had another one she didn’t tell us about on this account? She lost 8 lbs in a week and got put on TPN. After two weeks of vomiting and complaining of extreme pain and an inability to raise her feeds at Tampa they realize she’s malingering and send her home. That night she claimed she vomited blood so she called her gastro at Arnold Palmer who direct admitted her for a new scope. Endoscopy and CT both come back normal, biopsy shows an infection. She gets an extra special trip in the children’s hospital critical care ambu for a Dexa scan! Then they also send her home to figure it out on her own because after treating the infection she’s still screaming about pain and not being able to raise her rate.
Over on the cosplay account, I wonder why she suddenly decided she was a sometimes-gay sometimes-man who likes winged eyeliner. Anime, not even once.
On her regular account she says that in September (posted in November*) her line got infected yet again, cultures came back positive. Her mom didn’t believe it because before she felt like she was dying when it was infected and this time she just felt like she had a bit of a cold so her mom refused to take her to the ER. Instead they waited days then brought her to the PCP who said it was probably a false positive and ordered new cultures. Home health refuses to send a nurse for that so they end up in the ER anyway where it turns out it is infected. She’s back in her favorite nest, the cancer kid floor. They give her vancomycin which kicked her directly in the kidneys and she says they were considering dialysis if it didn’t normalize. A few days later she finally develops the expected symptoms. Something about this story is so fucking weird and I can't pinpoint it. (*at this point all of her posts start to be on a delay. Shit that happens in July doesn’t get mentioned until February. So don’t go by the dates she posted.)
