The CRPS documentary is finished and she gets to go to a private screening. She was not the “star” but one of many interviewed to back up the story of Mattock’s moms CRPS and ketamine treatments. Some of the others showed some real gnarly swollen and red/purple limbs, but Natalia is not one of them. She just gets filmed getting a dose of sedative before her ketamine and dozing off, talking about how much she hates school and has no friends, and she wants to die now. The endcard for her says she’s not in remission but has much less pain from the treatment. You can watch the whole thing
here if you are so inclined. I just tabbed through a little.
She’s basically getting ketamine ‘round the clock these days. She has botox to see if it will help with her GP but she’s still vomiting chicken broth and red jello, the only things she’s allowed to eat. It’s kind of fun, I’m almost certain she is either doing this on purpose or has some serious somatic vomiting that’s making her vomit whenever she tries to eat, something she may not even realize she's doing intentionally (as in rumination syndrome).
At last. I can bury the lede no deeper. On her right (our left) is Dr. Ashraf Hanna of the Florida Spine Institute, her pain management doctor who prescribes her high dose ketamine treatments. Many of you already know the punchline here but Dr. Hanna is the same one who treated Maya Kowalski of Take Care of Maya fame, taking over her care after the family could not afford to keep seeing the doctor who prescribed the ketamine coma in Mexico, Anthony Kirkpatrick. Hanna is the one who was signing off on 1000mg doses of ketamine
daily for a ten year old child and the last time Natalia told us her dose it was 800mg in the clinic plus benzos on top. Hanna refused to increase the dose any higher despite Beata’s demands and eventually decided if the extraordinarily high doses she was receiving were not adequate to control her pain then Beata had to accept that this treatment had failed and move on. Maya was still a patient of Dr. Hanna’s at this time and her mother was still alive, although (much as I wished she was), she was
not the "spoonie sister" Natalia was getting infusions with at the start of this. Hanna's clinic pretty much only nominally offers other treatments and their bread and butter is their cash-only ketamine infusion clinic loved by munchies and munchausen moms alike.
It’s feeding tube awareness week. Are you aware Natalia has a feeding tube? Because you should be.
Still losing weight. She feels like a normal kid, not a lonely handicap one, when she gets to do normal teen girl stuff with other teen girls. Incredible.
Another day to be aware of Natalia. Remember when genetics told her she didn’t have EDS? Fuck that, she’s got it because she says so.
For a brief moment she seems almost sad thinking about how much of her life she’s giving up for this.
“I’m sick and slowly dying but euphoria will keep me flying.” Someone please take this girl’s ketamine away.
In late April after no real updates she lets us know she had another round of ketamine infusions. A week later her blood pressure was very low. The 15th she woke up with a fever, the first she’s ever had in her life (wow) and the doctor suspects her central line is infected. While waiting on cultures she suddenly spikes another fever, her BP and heart rate go through the roof, and her mom takes her to the ER. The ER doctors immediately admit her for potential sepsis. She’s put on heavy duty antibiotics but they also find the line is colonized by yeast. Right before discharge, another, stronger bacteria shows up in her line and the yeast comes back so the line is pulled.
As with all these girls, she seems completely unaware of the danger she’s in and just complains that the doctor didn’t follow her special protocol for IV placement and now her CRPS is flaring. She’ll be in the hospital another three weeks or so while they clear the infection and place a new central line.
Three weeks later she’s out with a new central line and she’s headed to Puerto Rico once school ends.
Another vacation where she feels fine and does what she wants, but this time instead of the miraculous I-can-walk-no-I-can’t act she has her parents rent a beach wheelchair for her. I want to point out how little muscle mass there is on her legs. Compare her to some of our other girls who clearly walk around just fine when the cameras are away. Natalia does not appear to be one of the ones who gets home and drops the wheelchair act or puts it away when it’s inconvenient. Which again makes me wonder who exactly is the puppetmaster here. Is Natalia just incredibly committed for a 16 year old, with all the willpower only the young and foolhardy can truly harness? Is Momma Ketamine making sure her little attention-accessory never exposes herself by keeping her drugged to the tits? Is it a little of both? Natalia knows if she plays along she gets drugs on tap and mom still gets to be the CRPS warrior mama? The other thing I want to point out is unlike a lot of our girls who get their tubes and balloon up, Natalia is
losing weight. She does not have the type of tube she could be using to purge her stomach contents but we rarely get the It Was Worth It meals from her. Again, maybe she’s just a very committed faker and her willpower only takes a backseat to her desire to be a normal teenage girl once in a while, maybe the constant ketamine treatments and maternal supervision are keeping her from unleashing her inner fatass. Maybe through conversion disorder she really does involuntarily vomit if she tries eating. Who really knows at this point? We know Natalia loves the attention, but there’s just something so very different about this one than our average port-n-purge zebras.
Speaking of attention, as a teenager from Orlando who claims to be bisexual, the Pulse Nightclub shooting is about meeeee!
Her friends and neighbors donate money so that Natalia can go to Disney. She quietly slips Mast Cell Activation Disorder into the hashtags. MCAD is the umbrella diagnosis that covers things like systemic mastocytosis (a definitely real disease diagnosable by bone marrow biopsy) and mast cell activation syndrome, the munchie favorite that is usually cover for an eating disorder and/or anxiety which has no clear diagnostic markers and arguably does not exist. Like CFS I think there’s some unknown disorder or constellation of disorders and lifestyle shit that causes MCAS symptoms in a very rare subset of the human population but that it’s basically impossible to pinpoint and now that every faker who doesn’t want to get a job has discovered the magic acronym we’ll never know.
Back to sick kid camp where she once again does archery and a bunch of other activities with no issues.
Now claiming her entire GI tract is paralyzed but NJ feeds work just fine and she’s not complaining of any bowel problems beyond constipation that is almost definitely drug-induced, based on how many times she's mentioned zofran.
tube is fucked again. I want you to notice something about this and the possible sepsis story. Both times she says her mom didn’t want her to be seen by an emergency doctor, but eventually has to because Natalia declines so much. There’s a few ways to interpret this, which include that Mom is recognizing that Natalia is constantly malingering for medical attention/does not think these are emergencies, or that Mom is trying to avoid the ER doctors because she knows they are more prone to question things. Hmm, I do wonder which one it is! She drops her tube rate down to 20mL.
She turns 16 so high on ketamine that she can’t even remember her sisters bringing her balloons and cake. October 2016. Two days prior to this photo, Maya Kowalski was placed in protective custody at Johns Hopkins All Children’s Hospital after her mother demanded insane doses of ketamine and rejected all other possible treatments, while making ominous statements about potentially overdosing her daughter at home to end her suffering because Maya no longer wanted to live.
God why do those breast cancer patients get all the attention? If you really love me, you won’t wear pink this month. You’ll wear blue, for me and my non-fatal slightly annoying passy-outy disease. Interesting choice of pictures. It's from Texas, when she had her heart surgery. I guess she thinks it makes her look super sick.
The Disney Trip. Things to note include the soda cup wedged next to her, although I suppose it could belong to one of the other girls, and that she appears to have gained weight since her Puerto Rico trip six months earlier. It’s hard to tell because she’s seated which makes her thighs look wider, and she so rarely posts clear body shots.
Cutting out this photo because many kids. it’s like all her friends and their families wearing orange shirts with her team Natalia logo, surrounding her and her mother.
She starts a nail art account. Again maybe not the hobby I would get into if I had crippling pain in my hands.
Medical update, her relative hits her on the knee and sets off another CRPS flare. No, she won’t show us this actual proof that her leg is swollen and purple. Wonder why. Her gastroparesis is stable but she’s been diagnosed with gallbladder issues. On 13 January she will finally be getting her GJ tube, after every treatment for gastroparesis has failed. In this year she wants to look into the neck pain all of her doctors and physios keep blowing off and to get on a higher dose of steroids for her POTS after every doctor she asked to do this said no. She can’t wait until October when she’ll turn 18 and be medically emancipated. Oh. Wow. Okay.
On that note, four days after this post Beata Kowalski killed herself. I’m sure people who followed that case heard that she hanged herself, but did you hear the part where she also had and IV bag of an unknown clear fluid hooked up to her and that the fluid was never tested and disposed of so we may never know what it was barring new toxicology labs on the exhumed remains? Or that she had recently filled a bunch of prescriptions for things like liquid ketamine under the name of a Dr. Barr who had no record of ever prescribing them and some of them were well outside the scope of his practice? Or that some of the experts who examined the suicide scene evidence disputed that the hanging was the cause of death and actually think she was dead of an overdose before the belt went around her neck? Or that she had a note on her phone that just said “Retaliation”? How about the part where the infamous “Take care of Maya” note actually said “Take care of Maya
but don’t let her suffer. No child deserves to live like that.” Man the Netflix documentary about this case sure did leave out some pretty interesting things, didn’t it?