We're All Insane - Medically Kidnapped at 13

Episode Date: October 14, 2024

Skyler dives into her shocking and heart-wrenching story of how she was medically kidnapped. Her family's life was turned upside down when medical professionals and authorities intervened, claiming control over her care. We'll explore the legal and ethical battles that ensued, the emotional toll on her and her family, and the broader implications of medical overreach. Skyler's Links: UMDF.org Mitoaction.org Taking Care of Maya (Netflix Documentary) If you have a unique story you'd like to share on the podcast, please fill out this form: https://forms.gle/ZiHgdoK4PLRAddiB9 or send an email to [e-mail] Business Inquiries please contact: [e-mail] Learn more about your ad choices. Visit megaphone.fm/adchoices

Hey guys, it's me Devorah. I just dropped an all new bonus episode inside my new subscription channel, We're All Insane Plus. This week's bonus episode is called My Brain was slipping into my spine. Listen now by subscribing to We're All Insane Plus inside your Spotify or Apple Podcasts app or go to we're all insane.com. Hi, my name is Skyler and when I was 13, I was medically kidnapped. To start off, I was born in Montana when I was born, I had some health complications. I had a hole in my heart, which eventually healed by the age of three months old. I failed to walk until I was three because of neurological issues. I failed to eat until I was four. Until then, my parents, like they had to be on a really strict diet and blenderized all my food. With the holes in the heart when that happens, so that can

heal on its own, like you don't always have to get a surgery to repair it? Yeah. Okay. I think some people, you have to have a surgery, but with mine, it healed on its own. Okay. And then I don't really have an explanation for that. Okay. And is it like, did you have like health issues from that at all? Or that was just something that you were born with and then it just kind of like healed over time? That one, it was just something I was born like. Okay. Got it. Like, it kind of got worse over time. Okay. And then you said you had some neurological things going on too? With my legs. Yeah. Okay. Got it. I got, I have perrefer neuropathy, which I eventually got diagnosed with. We moved to Wisconsin before I was two years old. Still, I had really bad leg pain. I was diagnosed with peripheral neuropathy. And I was diagnosed with

failure to thrive by the age of two because I couldn't keep down food and stuff like that. Failure to thrive is when you're not gaining weight or growing at your appropriate age. At this time, I was misdiagnosed. I do not have it, obviously. but I was misdiagnosed with cerebral palsy. And with the condition I actually have, that's not rare to be misdiagnosed with that when you're young. By six years old, I was suspected with mitochondrial disease, which mitochondrial disease is when your mitochondria don't work to where they don't turn food and oxygen into life-sustaining energy for not only like your body as a whole, but also your organs. so it leads to organ failure. It has so much different symptoms.

Like to everybody, it's to each their own. And there's no one with the same, like, kind. Okay. For say someone could have, like, the same issues that you're having, but they're having seizures and you're not. Like, nobody is the same. And then since they were suspecting the mitochondrial disease, they did a muscle biopsy to test for it.

And during that muscle biopsy, they gave me a drug that people with mitochondrial disease can't have while testing for mitochondrial disease. But they gave me propofol, which is a sedative. And any medication that works on your mitochondria is considered mitotoxic. Mido is short for mitochondrial disease. And mitotoxic drugs, nobody with mitochondrial disease can have. And I got that. I coded for two seconds and then came back to life, you know.

So do we know why they gave you that? No. Okay. Have absolutely no idea. Morons, I guess. Yes. I don't understand why they did that. And the best part is, is they didn't take enough tissue.

So it came back inconclusive. So I basically died for two seconds for no reason. So, you know, I just gave my mom a little heart attack, whatever. But at that time, me, my mom, and my brother got diagnosed with Eller's Danlov syndrome. It's a genetic condition that weakens your connective tissue, which holds your body together. So there's many different types of it. My mom and my brother, they have hypermobile. So they dislocate really easy. They sublux really easily. Me, I have classical. So I'm not as hypermobile, but I have problems with my veins, like getting IVs.

this is really hard. And then I sublux really easily. And then I have problems with, like, my joints, like a lot of joint pain and stuff like that. And at this time, I was still having health issues. My legs were really bad. It was hard to walk because of fatigue. I had a bunch of fatigue, which the fatigue I have,

it's not like you go to sleep and you wake up and you're fine. It's like when you have a, you know, when you have like a flu and like even taking a shower, like simple things that you normally do. Like it's just so much. Yeah. It's like that, but every single day. And then I was in and out of the wheelchair.

By the age of eight, I was able to get out of the wheelchair with a lot of physical therapy and occupational therapy. I remember when I was in school, like I would always get pulled out of school and then just do physical therapy for like 30 minutes every day. So was this all at the age of six? six to eight. Okay. Mitochondrial disease was suspected at this time. Don't ask me why we didn't do like more things for it. They did a blood test. It wasn't by a geneticist, so we still said suspected. We never said that I actually had it.

But from the blood test, like it had like abnormalities that somebody with mitochondrial disease would have. And then by the age of eight, my health actually stabilized. I lived a decently normal life. I still had leg pain. I still got tired really easily. It still had joint issues and stuff like that. But I was able to like live through it and get used to it. But they concluded that it was from, what was the diagnosis? Right now I don't, I didn't have my official diagnosis. They were just like. So it wasn't from the thing that you, your mom and your brother were diagnosed with. It was kind of just like all these things kept happening and there wasn't an exact understanding of why? Not as of right now. Yeah. before I got like my official diagnosis because the ellers danlos that mainly like affected like my

connective tissue so it didn't like make me more fatigued and stuff like that we didn't know why I went through spurts of what we thought was like just a stomach bug like I would not hold anything down for a few days or like up to a week you know it sucked but it was whatever and by the age of like eight I actually played soccer and my parents were so proud of me like I was doing really good Um, granted, after I played and everything, like, I did have health complications after as in like a lot of fatigue, a lot of pain. It was very much there, but I was able to function despite of it. Yeah. But at the age of 11, the day after Halloween, we know it was a stomach flu because both me and my brother caught it. And my brother recovered within like four days and he was going back

to school. Me, I just never did, basically. I was not tolerating food. I was not tolerating food. I was not coloring water. I could not keep anything down. My pain worsened for whatever reason. I was developing like really bad stomach pain. And I just kept losing weight and it got to a point. It was like probably two weeks, almost three weeks in and I was just losing weight. I was doing bad. Like I wasn't going to school for two, three weeks. Like that's very worrisome. So my mom brought me to the doctor and they did a gastric emptying scan, which is basically where they take, there's different kinds of it. It's like radioactive stuff. My first one, it was barium. And this stuff was so gross. I was 11 at the time also. This stuff was so disgusting. It was chalk liquid. It was like the consistency of a milkshake, but it was chalk.

It was awful. But it's radioactive and you drink it, unfortunately. And you, you drink it, unfortunately. and you just watch it like go down to test your gastric motility. And mine showed gastroporesis, which is delayed stomach emptying. So like my stomach doesn't work properly. Some people with gastroporesis, their stomach is completely paralyzed. Other people, it's just like delayed. And the barium sat in my stomach for six hours. And then it tried to go down into my intestines.

And my intestines regurgitated it back up to my stomach. Okay. So then I also got diagnosed with reverse motility, which is your motility working in reverse. And then since I wasn't tolerating stuff and my stomach wasn't working properly, they placed a feeding tube called an NJ tube. And it was a nasal tube that goes up your nose, which sucked because it had like a little weight at the tip. So you wouldn't throw it up. But like going down your nose, it sucked so bad. Yeah.

That's always been something that like scares you. me. Yeah, like the COVID test times a thousand. Oh, yeah. Right, because then it's all the way down. Yeah. Okay. But it went down, it went up my nose, down my throat, past my stomach into my jejunum. That's why it's called an NJ. I hated that. I was 11 at the time still. I was so insecure about it. Yeah. I willingly did not really leave the house because I had one old man come up to me and ask if it was a microphone. I cannot make this up, a microphone up my nose. Okay. So this was something that was in, like, long term, though. Like, you were, were you taking it out throughout the day? Or like, no, it was in. It stayed in as long as it, like, didn't come out.

Oh, and I forgot to mention, um, the first day that I had it, I hated it. It was very painful. And the nurse was putting medications through it. So they crush up the medications, put some water in it, push it through the tube. She clogged my tube. So I had to get it redone. And that was so painful. So it was like, I think they did the same side of the nose. So it was like abrupt.

Oh my gosh. That's terrible. It was awful. No, I was so mad at that nurse. My parents were so mad at that nurse. Yeah, you were so young too. Yeah. Like I really didn't know what was going on.

I just know that I have a feeding tube. My stomach doesn't work that properly. And I felt really bad. And then at that time, being on a feeding tube, it's really not ideal. So they started trying motility meds that would help, like, your digestive system work, like, just motility meds. And I had some, and I wasn't confirmed with mitochondrial disease at this time. And they gave me some that were on the mitotoxic list, but it wasn't confirmed at this point.

Okay. And I responded terribly to those. I was sleeping 23 hours a day. my temperature was so, I was so cold that it wouldn't read on a mouth thermometer under my armpit, on my forehead it would not read. And then my lips were kind of turning like a little bit blue. And then my face started kind of swelling. And my doctor was like, I was impatient at the hospital. Like, are you dying?

That's what I'd be like, that's what I can feel like. Right. I wasn't on it for a very long time because my doctor was like, she's responding. So this was over, this was your body's. response to one of those medications. Yeah, that's somebody with mitochondrial disease cannot have. So, and just to confirm, so they thought that you might have that when you were younger. And then now that you're older again, like at 11 or whatever, now they're thinking you might

have it again? They weren't sure. In the future, yeah. At this point, it was just like, I didn't, they didn't diagnose me with it because my muscle biopsy came back inconclusive. And they never tried again? No. They didn't want to because I also got like decently healthy at one point.

So they're like, why I put her through more testing if she's basically fine at this point, which I appreciate actually. Yeah. And then my doctor took me off the meds and the motility medications I was on. And all those symptoms that I described went away. I was sleeping a normal amount. I wasn't blue. I wasn't swollen anymore.

and my temperature was reading and it was normal. But I was still getting sicker. My fatigue that I had previously told you about was getting worse. My pain was getting worse. We had no idea why everything was just getting worse. So then they started suspecting mitochondrial disease again at this point, but still no official diagnosis. And then I got diagnosed with allodinia and hyperalegia

on my stomach. I had mentioned I was having stomach pain before, which means, like, touch like this, it hurts. Like, clothes are fine. I can obviously tolerate clothes, but, like, a touch to the stomach. It hurts, yeah. And then I was diagnosed with pods. I'm Anna Garcia, host of True Crime News, the podcast. Every week, we bring you in-depth coverage on cases making headlines, as well as those that go under the radar. Tune in for murders that defy explanation mystery seeking exploration and shocking secrets that will leave you breathless. Each week we honor the victims by going beyond the salacious in our search for justice. Crime never stops, and neither do we.

Listen to true crime news available now wherever you get your podcasts. You had a girl in here with this. Postural orthopedic tachycardia syndrome. It's an autonomic nervous system dysfunction. My personal symptoms are dizzy. I black out as in like my vision goes black if I stand up too fast. Heart rate fast. Blood pressure low.

And then exercise intolerance too. And I needed more like fluid than the other person more hydration. I feel like doctors are so quick to diagnose sometimes and then like take it back and the back and forth. But it's like it's really, you know, imagine receipts. even all these different things and like having some sort of like hope or understanding and then never mind you might have this or you know what I mean it just sucks like I feel like it takes a while to really figure out what you have or then even to find like a specialist to really

help you yeah because like the misdiagnosis of like cerebral palsy like that scared my parents right because then you're like planning and preparing for something and thankfully I did not have it I obviously do not have it was just at the time because I had all those like developmental delays and everything like that, but I do not have cerebral palsy. But I got diagnosed with pots and for pots my doctors started doing at home IV fluids. So a nurse would come over and they would place like an IV and do like more fluid. So I'd be more hydrated. And it did help like I was less dizzy. Like just things were better. And then thanks to my others Danlos like as I said, my veins aren't that good. My veins started roping. The nurses,

like they would be there for like 20 minutes trying to get an IV. And I'm sure what that was painful, right? Yeah, I was still 11 at this time. Like I didn't want any more needles. Yeah. And then they had like no access. And this was about 10 months with my NJ tube, the nasal tube. And like my throat was hurting, like my nose was hurting.

It was just not ideal. And since they had tried the motility meds, they had the IV fluids were working. They decided to place a GJ tube. tube, which is a surgical feeding tube. It's called a GJ because it goes into your stomach, and then it also goes into your jujunum where I was originally getting fed from the NJ tube. And then they also placed a port, which I have one right now. And it's a surgical central line.

They basically place something like under the skin, and then you access it through like a needle. Okay. I think the girl that... She did. Okay. Yeah, she did. But so the other... The surgical feeding tube that you said you had, so that was placed on your stomach?

Yeah, in my stomach. And as I mentioned before, I have allodynia and stuff. Right. So that hurt so bad, so bad, so bad. So they, did you find that that one you liked better than the nasal one? Honestly, they're equally as bad. Okay. Medical devices are obviously not ideal. So it was basically just the only difference was one you could see more than the other, but they both sucked?

The difference was when one was surgical and the other wasn't. Got it. Yeah, you could see it less often. But the main difference was surgical. And then the port they placed, it goes, it's a central line. So it basically does the same thing as like an IV. Like you can get blood from it. You can get like IV fluids or whatever you need.

What's I going to say? You're fine. But I had that. And then since I still had like my motility issues with my GI tract, again, being on a feeding tube is not ideal. I moved to Arizona when I was nine, but at this time there were no pediatric motility centers in Arizona. They do now, but at the time they didn't. And my doctor, we were looking for a hospital that would take my insurance. And there was one in Ohio.

So they did more motility testing, like the gashchuk emptying scan. There was one that I had like a radioactive egg that I ate. And at the time I hadn't ate much like the last few days. I was throwing everything up. And I threw the egg up. But it was a really good egg at the time before I threw it up. So that didn't really help. But I had a bunch of motility tests.

It was it was absolutely awful. It was very embrasive like tubes everywhere, as you can imagine. Everywhere. And at this point, like you said, you were basically just like staying in the house for the most part. My parents would take me out like to stores. They didn't want me just like out there. But I couldn't walk very far distances. I was not paralyzed though. It was due to the pain and fatigue and like my legs like they would just give out. Like I would be walking and then next thing I know I'm on the floor and it's not from my pots. It's just from my legs. I was still in the wheelchair at this. I was still in the wheelchair at this. time, but I was in physical therapy because being in a wheelchair is not ideal. And my parents didn't want me stuck in there. And then also like deconditioning, you know, we don't want that. So a lot of physical therapy and I still was in it. And then the motility testing I had in Ohio, it showed the same thing as my other motility tests. After that, like a few

months passed at this time I was 12. And my J-feeds, like the feeds that I was getting through my feeding tube into my small intestine. I was no longer tolerating them. As I said, like, I've reversed motility, but we were hoping, like, the feeds would work, which they had been, because it's past the duodenum. It's, like, a little bit into your small intestine, so I shouldn't, like, regurgitate it back up. But my intestine started regurgitating my feeds that I was getting back into my stomach. So I was throwing those up. So I was not tolerating those. I was losing weight still. We even tried, like, kind of watering the feeds down with some people. Pedialite and just nothing was working.

So I was put on TPN, which is total parental nutrition, where you get your nutrition through my port. There's different kind of central lines, but mine was a port at the time. And it basically, you get all of your hydration, you get all your nutrition through a bag of like anything you need, like to sustain yourself. All nutrition, all hydration. It has like fats and everything. So just everything you need.

And that was going in through that port. Yes, it was. At this time, they had like a different kind of lipid, and I did not respond to it well. And it gets processed through your liver. And I started going into pre-liver failure from it. I was only on TPN this time for two months because no. But while I was on TPN for this time, I was on gut rest. So I did not eat anything. I had no feeds at this time, just giving my GI tract a little break. And then we tried to. feeds again and it worked. I was able to tolerate them as much as I needed and I was able to get off TPN. I still had my port for IV fluids so I could stay hydrated because of my stuff. Now during this time, you might have mentioned this, but with schooling and stuff like that, were you doing a lot of your school at home? Yes, I was online school. At first I was online school and then it was helpful. I would watch those videos, but I wasn't getting it. Okay. So then I was able to have a teaching. I was able to have a teacher come to the house and teach me. She would come every day, every weekday for about two hours

and just teach me everything. And I did amazing at that because it was just one to one, like anything I needed like help with. I had her. My grades were great during that time. I still had that. I still had my port at the time. Well, I was able to tolerate my J-feats again because the break from anything going through. My GI system stopped. So I was able to. I was able to tolerate my J-feats again. I was to tolerate them again. Still at my port, still had my tubes, still had everything. And then for whatever reason, a home health nurse came to my house. And he came over for some educational reason, like to educate my mom on how to do stuff, because he's a nurse, you know. And for whatever reason, there was me, the guy who came back from the bathroom and my mom and my dad in the room. And he

opens up my microclave on my port, which your microclave, it basically kind of filters out germs. So if the microclave is off, like everyone has to be in mask. Or you can get a blood infection. Like it's very, it's very like you have to be sterile with this. It's very serious. He opened my microclave. No one was wearing a mask. He was not wearing gloves. Like absolutely nothing. And then after you change a microclave, which you never put a dirty one back on, you alcohol wipe it for at least like 15 seconds so it can like clean so you don't get a blood infection and he didn't do that my mom was like why did you open that like nobody had mask on and he just put it back on like nothing and then within 24 hours I was having fevers um I felt awful my like how you feel when you get a flu times a thousand like

it was absolutely awful it was harder to walk it was harder to do anything and with central lines um if you of a fever, you automatically go to the hospital because the chance of a blood infection. I went to the hospital and at this point I was septic. I had a blood infection because of this. I was doing absolutely terrible. And then I was on really harsh antibiotics. And then I got sent home because my fevers went away and at the time there is like not really much growing on my cultures, my blood cultures to test for the infection. And then they called me went, well, they called my mom. I was 12 at this time. And they were like, something grew on her culture again, because it takes a little bit for it to come back. And we had to go right back to the

hospital and the infection came back again. This time I was not septic. I had to be on harsh antibiotics again. And my port had to be removed because it was too much of a risk. And at this time, like, I was still, I was tolerating my J-feed. So they were like, well, maybe we can do something. So I wouldn't have a central line because it's just for like fluids and stuff. But they took the port out and to substitute the fluids I was getting, they started putting pediolite in with my J-Feeds, which at the time that really helped because it helped me tolerate the J-Feds better and then also gave me some hydration. And then I was having really bad GI symptoms at this time. And we went back and I tested positive for C-DIF, which C-DIF is an infection in the colon, it is terrible. It is so awful. And then at this point, I was just tolerating

feeds, you know, I was doing decent. Then at this point, um, the feeds were going down, but then they were again regurgitating back into my stomach, which I had a break from that. Um, and I was losing weight again. My pain was absolutely terrible, not just from the CTIF, but the blood infection in general. like it takes a lot, it takes a lot of time to recover from sepsis and blood infections and then also being on harsh antibiotics. Yeah. And I got the CTIF from the harsh antibiotics. The antibiotics not only kill your bad bacteria, but it also kills your good bacteria. That's how I developed CTIF. And then I started losing weight because of that because your GI system just goes crazy. I was throwing up my feeds again, like just awful. And my calories were upped by my GI doctor at this time

and I was still not gaining weight. I was doing terrible. My fatigue was getting worse. Like it was very much not ideal and my pain was really, really bad. Like one of the worst it's ever been. And I don't know if it was just my pain in general that I was going through a crash. I don't know if it was the CTIF. I don't know if it was the sepsis. I don't know if it was the antibiotics. It was just bad. But it was terrible. So at this time, this was October 2017. And I was 13 years old at this time. And we had an insurance change. My health insurance changed. And on the insurance card, it said a specific hospital. So my mom was like, well, since her insurance changed and it said a specific hospital, like, I'll take her there. That's like odd. They

like just picked a hospital that was in your... It just had it on the card. Okay. I'm not sure why, but it said like the hospital. Okay. So we went to that hospital. It wasn't really far. Instead of my normal one. Went to that hospital and I was admitted October 17th for my pain and then also not tolerating my feeds because I need nutrition. My pain was so bad.

Like I have chronic pain. Like I can tolerate it to a decent level. I can like hide it. You know, I have to do something. stuff like I'm on like pain medication for nerve pain and stuff like that but this pain was so bad like none of the medications I had at home were helping I was shaking I was sweating I was crying I would not like stand up straight like it was like really bad um so I was admitted um and I was again in so much pain like if I'm having all those symptoms it's going to be hard for me to talk I had like a high pitch voice and I had like a low a soft voice at that point um so

if I even talked, like it was still kind of hard for me to hear, hard for people to hear. And they started like getting suspicious because like my parents would say like she's in a lot of pain. I would show that I'm in a lot of pain, but I didn't verbalize it enough. But I was shaking, crying, sobbing and wouldn't get up. So my parents were telling them like she has pain, like she has suspected mitochondrial disease. They always said suspected. Literally on the medical documents, even at that hospital, it said suspected mitochondrial disease. My parents were not adamant on it, but we were in the process of getting a geneticist so I can fully get diagnosed or I don't have it.

We're hoping I didn't have it because that's a heavy diagnosis. But I had all my other conditions. I had my others danlos. I had my pots. I had everything. My gastroporesis, I get all showed on scans and like tests and everything. And you can't see my pain on an x-ray. You can't see my pain just like in a blood test or something like that.

So it's in all of this pain, but they couldn't really see it on the colonoscopy that they did. I don't know why they did a colonoscopy, but they did. You couldn't see it on any of that. So just like the doctors, they didn't know me at all. This was my first time ever going there. I was, what's it called? I was established at my other hospital, but since we had the insurance change, my mom just brought me there. And since you couldn't see my pain, they diagnosed me with somatoform disorder, which I'm not invalidating anyone with it.

It's pain, you know, but it basically means it's all in your head to where your pain, like I wouldn't have, I would not have my peripheral neuropathy. I would not have my allodinia. I would not have my hyperalegesia. It would just basically be like mild stress or something like that. Like it just triggers all this. Well, so wouldn't it be just like a hypochondriac? Like you just think that you. Kind of, but like it's like pain.

Okay. Not really like a hypochondriac. So it's like people like actually have pain but it's like in their head. Like they're not there's like nothing that is actually diagnosed. There's no like physical cause for it. They just have pain and like stress like will trigger it and everything which to be fair in a normal person, stress like can deteriorate someone. Yeah.

People can die from stress. Like obviously, but with somatoform disorder. So they basically just said like all these diagnoses that you've gotten in the past, like out the window basically. No, it's a modiform disorder. Okay. That has nothing to do with like others downlost or anything like that or the pots. But like all the pain diagnoses that I got from professionals didn't have it no more. And then at this time, they tried to put me on an antipsychotic for my pain.

and that antipsychotic being in the mitotoxic list, meaning people in mitochondrial disease can't have it. I didn't have a confirmed diagnosis again, but it was suspected. I had like the blood tests were off to where it would, like, that's... Red flag. Yeah, red flag for mito. And they said that they were going to put me on the antipsychotic to help with my pain. And my mom was like, hell no, you are not putting my daughter on a medication to where it's

the mitotoxic list. Like she had a bad reaction to this medication, that medication. Every single medication that somebody with mito is not supposed to have, and I had, I had a terrible reaction. Like, she doesn't want to make me more sick. Like I was already there. My mom brought me there because I was sick. Nobody goes to a hospital in good condition, obviously. With my mom saying, like, I'm not letting you give my daughter a mitotoxic medication. They accused my mom of refusing medical care, which is like a big thing that could be, quote, medical child abuse. If you are refusing care, like, they're just like, well, you don't want to make your daughter better and stuff like that. So then at that time, they started not only believing that I had somatoform disorder,

but that my parents had fictitious disorder by proxy or munchausen by proxy syndrome. Wow. Which means a caregiver makes the person that they're, caring for sick. So all of these diagnoses, none of them. I didn't have any of them except somatoform disorder. And my parents had munches and bioproxy. Like my parents were making all of this up. And you can't make up a blood test. But what a jump. Like that is insane. They said that they were, and something that never made sense to me is they said that they were over-medicalizing me. Like, I didn't need this feeding tube. I didn't need that previous port placement. Like I didn't need,

I didn't even need that muscle biopsy. Like, why would they even think about that? But then they also said that my parents were neglecting me medically, which I don't, I never understood how they could be over medicalizing me. Right. But then also neglecting me. Yeah. It's like two opposite things.

It doesn't make sense. Yeah. That never made sense to me. And then I was doing awful. My pain was terrible. These doctors, I didn't know that they were accusing my parents. of that. I knew that they thought that like I, it was all in my head and they were rude to not only my parents, but me. Like they, they were mean. And at this time, I had like my therapy dog that I was

training to be a service dog at that point. This was 2017. I was 13 years old. So you are allowed to bring those into the hospital. I brought mine into the hospital and they just like hated me and my family. They would come in and they would be like, she's not allowed and we're like, she's literally allowed. And then they would do stuff to try and like for us to get rid of her, like to like make her go back home. They started like hitting me like this to try to make her attack them. They were so like just rude. And then with that diagnosis, DCS obviously got involved with the Montchelles and bioproxy. And they were close. mostly monitoring us, like monitoring my parents' behavior, writing every single thing down

that they could to like prove that my parents were making me sick. And then this was, I was admitted October 17th. This is now October 29th. And this doctor, who was the only good doctor in that entire hospital, literally bless him. I hope he's having a fantastic day today. Like just amazing doctor. he put on the note he was like there's nothing to suspect monchaise by proxy and there's nothing like just send her home so we were getting ready to discharge um my parents wanted to bring me to another hospital honestly because i was still kind of underweight but they did give us like a plan they changed my formula to where like hopefully i would gain weight and stuff like that um and we're getting ready to discharge from the hospital on october 29th we were

literally, like, all of our stuff was packed. I was getting ready to go into my wheelchair, and the doctors come by, and they're like, nope, you can't leave. D.CS won't let you leave. And we're just like, the doctor came in. We were, we're supposed to be discharged today. They're like, nope, DCS won't let you leave. Now it's an open case. So that's great. And then on October 30th, we still didn't really know what was going on. It was about 8 p.m. at this time. me and my mom were just having like a little talk and I still had my therapy dog that was training to be a service dog. Oh, may I add service dog because she would alert to like my anxiety panic attacks and stuff like that

because I would I would like self-harm at that point. So she would alert to it before it got to that point. And I do. I don't want to interrupt you, but I was going to ask you this before if you're comfortable answering. But as far as I know you were still young at this point, but like how was your mental health as far as like, far as like, because I feel like it was nearly impossible for you to have a social life to a certain degree and to live, you know, a normal childhood per se. So I wanted to ask you, too, like as far as your mental health was going, like, how was that? I was sad, but my parents would try things to

make me have like a normal life, like kind of accommodate to it. Yeah. So like they would try to take me up to like the malls and stuff like that. My outings, like appointments, like physical therapy and just normal appointments and stuff like that. And then also, if you're I couldn't go out with friends. I had really good people at the time. I'm still friends with them. But they were my age. We've been friends for like 10 years now.

And she would come over and we would hang out. Like we would do like crafts and stuff like that to where I could still have friends because I'm 13, you know. I want, I want something. Of course, right. But I also at this time, it didn't really make sense, but I didn't realize how much I was missing out. Okay.

Like I saw, I had social media, I had Instagram and I saw like people doing things. but I didn't really understand that these are my developmental years. Like these are really important. I now realize it. But at the time, I didn't really realize that. It's better that way, honestly. It really was. Yeah, I think that would make me very depressed.

I think it would set you back too because it's like it becomes less about like, okay, let me get better and more like this sucks. I'm missing out on everything. You know what I mean? It shifts that perspective. So it's the most better that you didn't look at it that way, I feel like. And then also with my parents. They tried their hardest to have me like a normal life, but I can't go out.

I didn't have much independence. So I would get depressed at times, like in the hospital. It was miserable. I was depressed in the hospital. Parents would try to do things like to make it better, like my therapy dog, you know. Yeah. But fast forwarding to October 30th, the day after I was supposed to get discharged, it was 8 p.m. at this time. and a child life specialist, which they're there, like, they do crafts, like, if you're getting a

procedure, like, they'll explain the procedure and stuff like that. Like, they're just, like, they're really good people in the hospital, basically. A child life specialist, and then, I think it was a nurse. Yeah, I was a nurse, came in. And also a caseworker. And the caseworker was like, hey, like to my mom, like, can we have a chat outside? And then the child life specialist and the nurse stayed with me. And then, like, it was about, like, 10 minutes and, like, my mom wasn't back. And I was like, do you know what they're talking about? Like, I didn't know I was 13. No, this, I didn't realize it was so hard to talk about, but I won't cry. But, um, child life specialist and the nurse stayed with me. It was about 10 minutes. And I was like,

what are they talking about? And they're just like, oh, you know, they're just chatting. And then about 15 minutes go by and the door like bulges open. And it was a bunch of cops. They had canine dogs. It was sheriffs. There were a security. So many of them, no empathy in any of them. They started grabbing all of my mom's stuff.

They were just like, is this your mom's? And I was like, yeah. I was like, what's going on? Like, I was so scared. Like, I was just like, like my heart started racing so fast. I remember it so vividly. and then they were just like, okay, now we need your dog. And I was like, you're not taking my dog.

Like, what do you mean? Like, she's allowed to be in this hospital. Like, we've proved it many times. Like, what has she done? Literally, what has she done? You guys have tried to make her attack you so she wouldn't, like, be there. Like, hitting my legs, like, that's crazy from a nurse. And I wouldn't give them.

They grabbed her leash and they drug her out by, like, choking. her. I could hear like her coughing, like choking. And that's my pride and joy. Like I, her name is Frito. Like I love my dog so much. And that hurt me so much. I was like, what is going on? I didn't know what they were doing with my dog. I didn't know if they were going to bring her to the pound or something. I didn't know what they were doing with my mom's stuff. I was so confused. And then they were just like, okay. And then I was texting my mom on. I just had like a little iPad at this time. But I texted my mom. I was like, they're taking your stuff. What is going on? And she was like, I'm so sorry. I'll get you back soon. And I'm like, what does that mean? Right. And then,

um, they were like, okay, now we need your iPad. We need all of your electronics. And I'm like, why? You guys are taking absolutely everything from me. I'm 13 years old. Like what? Like what? And then they moved me floors. So they moved me to a different hospital floor. And it was about, it was about like 9 p.m. at this time. And I was scared. I didn't know what was going on. I had nobody was telling me. And then I was asking them, I was like, will I ever see my parents again? Because it was just my mom there. My dad was at home taking care of my brother. And I was like, am I going to see my parents again? They're like, yeah, you'll see them. And then I was like, will I ever like go home? And they're just like, you'll see them. And then I was like,

where's my dog going? Like, I had all of these questions and none of them were getting answered, except I will see my parents again. But I didn't know if I was going to go home. And then I had a sitter in my room for 24-7. They would change out every 12 hours. And they would, it was so weird because it's normally like for suicide watch or something like that. I never showed signs of like a suicide. When they would ask me, they always ask you, like, do you have like thoughts of harming yourself or harming others?

Like blah, blah. I would always say no. But I had a sitter 24-7 and like some sitters like they were pretty cool. other ones, like, they would watch me sleep. And I'm like, I would be laying in my bed and they would be standing about five feet away from me, watching me sleep. Like, that's, that's all. And then I remember there was some, like, when I would turn in bed, they would, like, get up to see me. And I was just like, not going anywhere. Yeah. Not going anywhere. Can barely walk at this point. I'm really not. And at this time, like, I was so sick. Like, I was nauseous all the time. I wasn't eating.

at this time I was just drinking like some juices like clear liquids because that's what I could tolerate. Every time I ate like food, I would throw it up. But I could tolerate some apple juice, you know, some water and stuff like that. So I didn't eat. And at this time I was also vegetarian. And they thought that I also had an eating disorder. So they would place food in front of me for every single meal and every single meal included meat. And I told them I was like, I'm vegetarian.

Like I even if I wanted to eat, I wouldn't eat that. And then they just kept doing it. They would make me sit up, which at this time, like, my health just started getting worse at this hospital. Sitting up for more than two hours, I couldn't do it. Like, I would just get so exhausted from that. I was losing my ability to walk before I went in there, as I said, like, I could walk short distances without assistance, but I could not walk, like, long distances. And short distances, I mean like from the door, like from the door to the car. I could walk that.

I could walk to the bathroom. I could walk to the living room. I could walk to the kitchen. Like just mainly like in the house kind of thing. And then at this time, I wasn't able to like walk that much without assistance anymore. No. I wasn't able to walk without assistance anymore. I was not paralyzed, but I was so weak in everything.

to where I needed a walker, like if I wanted to walk to the bathroom. I needed assistance if I wanted to stand up and just terrible. And then doctors kept coming in. Like I remember looking through the medical documents and every medical professional, like nurse, whatever, they have to sign off if they were like there that day. And some days there was about like 16 doctors and nurses that I would see. Like it was, they would surround my bed. They would ask me all these questions.

and I was mad, I was confused, I was extremely depressed. I can't even put it into words. Like, they took away everything. Like, I couldn't even have technology. Well, at this point, no, I couldn't even have my technology. I had like a TV and then occasionally they would give me an iPad, which was, they gave me it two times. When I was Googling, like everything, like, um, taking away because of mitochondrial disease, stuff like that. Um, I saw barely anything. I saw, saw one story and I felt so alone because of that and I was like, wait, like, maybe this is my fault. I never, I never thought it was my parents' fault at all.

They could tell me anything and I was like, no. But there was one story and that was it. Like, there is absolutely nothing and I'm like, what? Like, am I, like, am I just crazy? Like, why, like, I'm glad it hasn't happened to any other people. Like, that's great because this is awful. But, like, what? It's like lack of answers.

Yeah, I didn't have any answers. Even though, like, when they contacted the organizations, the organization said, yeah, it's not really, like, it's not really rare. But I didn't see really anything. I saw one story and that was all. How long were you unaware of, like, where your mom went and, like, your dog and all that stuff? Was this just, like a day so far or how long was this? This was about four days. I had no idea. Were you scared? I was petrified. I was 13.

One of the doctors they came in, they looked me in the eyes, and they told me, we're preparing you for adulthood. So you can't see your parents because you're going to move out at one point. I'm 13. A lot of people, like in this economy, they don't move out until like they're like 20. I'm 13. And then they took your iPad away so you weren't able to have communication with your mom, right? Like were you able to talk on the phone at all in the four days or no?

No, we had absolutely no communication at this point. The last message was, I will get you back soon. I'm sorry. And absolutely no communication. And they took everything away from me. Like nobody is going to be happy. And these are the people who took them away. I hated all of them.

There was a couple like nurses that were okay and like that one doctor that I told you about that tried to get me discharged. But the rest of them were awful, and I wasn't nice back. The sitters, like, they were rude. I would be rude back. And I didn't even talk to them much. All I would say, literally in all of my paperwork is, when will I go home? I miss my family.

You took away everything. Like, I didn't have my dog. I didn't have my parents. I didn't have my own. You didn't have answers either. I had literally nothing. And then a week goes by and a doctor. She had a Ukrainian accent, and now I cannot do doctors with Ukrainian accents.

She came in and she screamed at me. She was like, your parents are making you sick. They are poisoning you. You don't have any of these diagnoses. And then she was like, and you do not have cerebral palsy. And I was like, that got taken away after two months of having the diagnosis. I was like, I know I don't have it. I was like, I don't care what diagnosis I have.

I want my parents. Like that's it I cared about. I wanted to go home. Like that hospital was terrible. And like it was really confusing to me because like if my parents were making me sick, wouldn't I be the victim? So why are they treating me like this? Why are they yelling at me?

Why are they doing all of these things that like. Right. That's a good point too. Yeah. And then as I said before I have like allodinian hyperalegia. And at this time like I had just like it wasn't really a bladder problem, but I didn't like pee often. That was literally it. But it was like nothing really. So they started doing bladder scans to where they would have to put like an ultrasound. They would have to press down on your abdomen. And we had

told them like I've just had this my entire life. I had been tested before. Like there's nothing wrong with my bladder. It's just I don't. I don't pee often. Like that's it. They did bladder scans probably two times a day for four days. Absolutely miserable. I would tell them like that hurts. Like it's so painful. And then when they would like examine me, like they press on your abdomen and stuff like that, they would press like hard. Like my other doctors at my other hospital, like they were considered. They were like, yeah, she has aludinia. Like don't press hard. Like it was in my chart. And they were like really mean. And then she came in like multiple more times throughout those four days. Actually, it had turned into a week here. She had came in multiple times during a week and just said the same

things. Like, your parents don't love you. They're making you sick. You're never going home. Like, just all of these, like, awful things. Like, I was the most depressed that I have ever been during that time. And I'm 20 years old and still at 13 in that hospital. And just in DCS care as general, like, I was the most depressed ever. I would see multiple doctors a day, multiple nurses a day, the sitters and then the CNAs. And they were all mean to me. Like there was only like a few, like that one doctor that I previously said. And then there was like three sitters that I liked. And with the sitters that I liked, like I'd request them. I was like, yeah, I like that sitter. Like, I'd never see them again. And I would tell the doctors, I would tell the attendings. I would tell everyone like, I like, I like, I like, can I get them again? And I'd

never see them again. And then it was nice actually at this point. They let me use the hospital iPad, but they disabled parent, they didn't have parental controls on it. So I had Safari. So I started Googling, like taking kids away because of mitochondrial disease, like, like just stuff like that, trying to look at it. And I was 13. I didn't know how to delete my history. And then you have to give it back once it dies, like once the battery's done. So I gave it back. I got in trouble. and they didn't really say like that it was because something I searched. They said you were using it for inappropriate reasons. And they took it away.

And then they had given me an iPad, like this is fast forwarding, I'll go back. But they had given me an iPad again like probably two weeks later. And all the parental controls were off. Safari was deleted, like all of that. It just had games. and then even the Netflix was in kids. So, like, I mean, I was at a pediatric hospital, so that's not the worst thing. But, yeah.

And then it was about one week without seeing my family. And having the only, like, answers that I got was that they were hurting me. And I never believed that. I knew for a 100% fact, I never even doubted it that my parents had my best interest in mind. They were like, you were so underweight. I was in the two percentile with weight. Like I was very, very tiny. But it wasn't because I had an eating disorder. It wasn't because my parents were making me sick. It was nothing. And then while they would sit me in front of that food, like I wouldn't eat it. I was so nauseous. I was throwing up.

And then when I was sitting me through it, I wouldn't eat. And I got all my nutrition through my J-2. So they diagnosed me with RFID, which is avoidant restrictive, like eating disorder to where I should of Googled exactly what it was, but it was basically I had a fear of food. And I just, I was sick. Like, nobody wants to eat when they're throwing everything up. Nobody wants to eat when, like, their nausea is really bad. Like, they would give me zofran for the nausea, even though they didn't really believe I was having real nausea, even though I had tests, like, to prove I gotha preises and everything. But they were just like, nope. I had all that. And then they would tell me, directly, like, your parents are making you sick and, like, they would yell at me. And I was

fierce. I would yell back. Um, and I was 13. I did not cuss at this time. I didn't start cussing until I was 15. I would say, can I cuss? Yeah. I would say, fuck you. Give me my family. You guys are abusing me. I was like, I feel safe at home. I don't feel safe here. I just kept saying, like, I don't feel safe here. They would ask me all these questions. They wouldn't get much responses except give me my family. Like, just give me my family and why am I here? Why can't my family be in this hospital? Like, if you're going to keep me in this hospital, can I at least have my dog at this point? Like, can I have anything? But now a week has gone by, and I still have not seen my parents. A DCS officer came into my hospital room, and he was like, okay, we're going to take you

to go see your parents. I was, I was so happy. I can't even put it into words. Like, my, um, after the visit, like, my cheeks hurt so much from smiling. Like, that was the first time, like, I actually like felt happiness. I saw my mom, my dad, and my brother. And it was just, it was so, it was so nice. Like I felt okay. And then I had to leave because that visit was 20 minutes. So did you go somewhere or did they bring, they came to you? They came to me. Okay. So we met, like downstairs at the hospital because they weren't allowed to know my hospital room. But during this 20 minute visit, like when we saw each other at first, like, we were, like, we all started crying.

Like my dad, my mom and I, like we start crying. And then immediately we were pushed off from each other. And we were put in separate directions and talked to two different people. And they were like, you can't show emotion. You can't cry like that. And then also they started- What is this, jail? I'm saying.

Like, you can't show emotion. You can't talk about like missing home. Everything just has to be like fun conversation. Like, oh, what did you do today? like bizarre nothing sat in a hospital bed like literally treating you like a mental patient yes because that's what they thought I was and then they were like you're not allowed to talk about your health either which I hadn't brought my health up at all my parents weren't allowed to ask about my health at all um they had no idea how I was in my health even though it was deteriorating which I'll get into in a minute

and then I had to leave the visit which was extremely hard like I remember coming back It was like just back to reality and I'm just like, and I still had no answers. I didn't know if I was going to be here forever. I didn't know if I was going to like go home tomorrow. They were saying that my parents were making me sick, that like my parents weren't feeding me and everything, like I was so underweight. They still had me on J-2 feeds. They never stopped those.

I was not gaining weight in their care at all. I gained no weight. Absolutely none. Like they would try to weigh me before I went to the bathroom so I would weigh more. But then they would weigh me when I, after the bathroom, and I would weigh the same as my admission weight. So nothing changed. And I never had lung issues, never. And my right lung, it was losing function. And I had never had lung issues ever. And then I had an allergic, like a adverse reaction to Ativan when I was like 11. And so we put on like no benzodiazepines at this time.

We later realized that I respond okay with Versed. So in DCS care, they gave me a benzodiazepine to see like what I would do because it's on my allergy list. Like my parents are claiming it's an allergy. They gave me Versed. I get Versed now with procedures. But it's just Ativan. I cannot have. And we didn't know that at the time. So we wanted to play it safe and just say benzodiazepines. pains. They tested the benzo on me and I reacted okay, I guess, but I do remember since it was like my medications would go through my feeding tube, they would just crush it up and put it through. Like I had no idea what they were putting through my tube. I think they gave me Verset when I had an IV. So they gave me IV Versed and I reacted fine, I guess, because I get that now.

but I had absolutely no idea what like kind of medications they were putting through my J-tube, my feeding tube, because they just put the syringe in, put a flush in, and that was it. And there are some days where they put me on like an actual nerve pain medication. It was Lyrica. And I remember they were like, okay, Lyrica time. And some days I would feel like kind of like out of it from it for whatever reason. I'm still not sure. but there are some days where I would feel like out of it when they would give it to me.

There's other days where I felt completely fine. Like it was just another medication, which I was found kind of weird. And then at this time, I was getting weekly visits with my parents. I would see them once to twice a week. My parents would be there early. It would be there like 10 minutes early. They would bring me stuff. Like they were like, what clothes do you need?

Like, what do you need at all? Like, do you need razors? Do you need like anything? They even, they brought in stuff and then they had to go through like kind of like a security check thing. And I would never get it. And it would be like clothes. Like what, there's nothing in the clothes.

It's just clothes and I would never receive it. And my parents would give it to them. It was the visits. They had like this hospital had like an outside area. So we would go outside for some visits. And then they also had like a quiet room. and we would go down there, and this was two floors down from the hospital room that I'm staying in now. I had been like a week and a half to a couple weeks, I'm not exactly sure, and they were always monitored visits.

So they would take notes as they went if my parents or I started saying something inappropriate, as in like discussing my health and showing emotion. They would disqualify the, well, disqualify. They would end the visit. early or they would pull one aside and say like yeah you can't do that and then at one visit my parents were able to bring my dog outside i was so happy i literally still have a picture i was still in my wheelchair and when i came in i could walk short distances without assistance now i i can't walk i wasn't paralyzed but i was so weak and i was so sick like i couldn't and then also like the stress on anybody somatoform disorder

or not. It's going to make you sicker. Like, it doesn't even matter if you don't have chronic illness. Like, it's going to do something to you. So that was also not great. And then I was still not gaining weight, even though I was in their care. They said it was all my parents' fault, but I was still the same weight. And then at this time, like, I needed school, of course. And they would start putting me in, like, second grade classes. And I was 13. I was supposed to be in seventh grade. They would give me second grade, like, stuff to do. I would do it. They would give me like little kid books to read. I would do it. And then on the chart, they would be like, oh, she's only in the second grade like class. She can only read at a third grade reading level. But that's what all they were giving me. So it was literally just to prove a

point. At this time, they were just looking for placement for me, whether that would be a psychiatric unit, whether that would, because they didn't have one at this hospital, whether that would be a medically fragile foster home or just be a normal foster home, just anywhere, because I didn't need need to be in the hospital in their eyes. And in the doctor's notes, it said that there's no, like, medically fragile, even though they didn't believe I was sick, I was still couldn't walk and I was on two feet, so it was still medically fragile. They couldn't find a medical, fragile, um, psychiatric living residential. So on there, he put, well, I have worked with one in Virginia, so we're thinking. And I live in Arizona. My parents are like, they live in, we live in Arizona, like,

all the way in Virginia, like, whatever, but they thought I was absolutely insane. So they wanted to put me, they wanted me like institutionalized. They took a while to like, um, they took a while to find me a placement. I was in the hospital for a little minute. I'm not sure the exact timeline. I don't feel like doing the math right now, honestly. Um, But they had a court hearing. My lawyer, she told my lawyer, yeah, I had a lawyer and my guardian of Lydom. They both told me that I could go to that court hearing. It was December, no, it wasn't. It was like, it was late November. And they told me I could go to that court hearing. So I was like, so, like, I wanted to, because it would be also an excuse to see my parents. Granted, I was really sick. And that's why they didn't let me go there, even though I was told I could go there. And in that court hearing, it was like my placement hearing. So they put me in foster care. And the foster placement that I had, the people there were very nice. They were a loving family. They did their best to their knowledge. Obviously, DCS was telling them, like, do this, like she's like crazy, like all that. But they didn't

treat me like I was crazy. Like they were just normal people. So you were basically put into foster care. I was in foster care, yes. And this is all because they were saying your parents were making you sick and you were making everything up. Yes. Yes. So I was in foster care. And the reason why they put me in like a normal facility and it was great because they had stairs. So I would have to sit down on the stairs and try to carry myself up by my hands, like push myself up.

And the foster dad that I had, like he would have to carry me up like the stairs. And they were never, no one was able to contact the other hospital to, to prove like what they had diagnosed you with in the past at all. Like to kind of be like, like, I guess to pin it back to show it's like it's obviously this is all falling on the new hospital. Whereas like the old hospital like diagnosed you with numerous. You know what I mean? I get what you mean. Yeah. So basically with that, like the hospital that I was originally going at where I had all those.

diagnosis is. That's a big chain hospital. And this is something like court, like this is legal stuff. So the doctors that I had, they did put in a letter saying, we have been treating Skyler for XYZ and she has the diagnoses. And my doctor put his job on the line for that, like actually, because it's a big chain hospital. If it came back, like, oh yeah, her parents are making her sick, like they could get sued. I'm not sure the exact reason. But it didn't work? It did not.

Okay. I mean, it later did. Okay. But at this point, like, no. It was not helping. Chee, that is insane. Yeah. But what they do is when they have like a medically fragile kid that they want to put in a

psychiatric unit. But at that time, there is no like openings or whatever. And like the psychiatric unit they wanted was in Virginia. they'll put them in a normal living facility, like a normal, not facility. They'll put them, yeah, they'll put them in like a normal group home. They'll put them in a normal foster home, like stuff like that. And then they'll be like, look, like she's too sick to be here. Like she needs to be somewhere else in case they don't have like time to or resources to get

me to where they wanted to. And then in foster care, I got sick with a cold. and they were trying to get it down with like Tylenol. Ibuprofen at this time we didn't know that I couldn't have Tylenol. But they were trying to get my fevers down. I felt terrible. They took me to urgent care and I kept telling like the foster dad. I was like I need to go to the ER.

Like I don't need urgent care. Like I need the hospital. But he took me to urgent care regardless. And then they transported me by like not an ambulance because it wasn't like a big. hurry, but like a transport that looks like an ambulance and basically is kind of the same thing, except it's not urgent. And then I was in that hospital, and I was in that hospital, and it was not that hospital, and it was not that much better at all. The doctors were mean, like, they were just rude, because they had, like, all my chart saying from the previous hospital that I was at. And this hospital

that I got admitted to. It wasn't the hospital that I got DCS care, and it wasn't my original hospital that I was established at. It was just a random hospital. And I was admitted for like three, four days. And for the first time, my parents were actually able to visit me in my hospital room. And it was the only time since they left that I felt safe in a hospital room. But again, once they left, it was just back to reality. And when you were in foster care, how often were you able to talk to them or see them? It was once to twice a week. Okay. And they placed me far.

They placed me like an hour drive. So I'd have to sit in transport for an hour. So I was already exhausted. And then by the visit, like I was asleep. Like I couldn't do anything after that. Did you have access to talk to them like on the phone or anything? No, none at all. It was just the visits.

And all of the visits were marked. monitor. There was not one visit where the DCS officer was not there. And we couldn't talk about certain things. And then I was still in foster care. I was still doing terrible. And then my parents, they did not take this lightly. Like their kid was gone. Like it was, this was everything to them. They started contacting organizations because I was still in my, other hospital, I was suspected mitochondrial disease. So, like, they were still suspecting it because there was, like, stuff. I just needed a geneticist. That's why I was not formally diagnosed. It's because, like, I had the blood work done, but it wasn't checked by a geneticist. That was the only reason.

So they started contacting places that were, like, mito-organizations and stuff like that for help. And actually, those organizations, this is not new to them at all. Like they were like, oh yeah, do this, this and this. Like they, for people with mitochondrial disease like that, that wasn't rare. Well, kids with mitochondrial disease because it's so hard to test for. It's not like a little x-ray. And like even a blood test, you have to go in the blood to like find it. So like a lot of things like they just get medically kidnapped for it and taking into DCS care.

And they had suggested a lawyer in Arizona. and then they had suggested a mitochondrial disease geneticist in California, but he did like telemed visits to where it was just online and stuff. So with this geneticist that they got that specializes in mito, he does not take this lightly either. He went through all of my medical documents from Montana to Wisconsin, from the hospital that I got DCS custody from, every single hospital that I had been in. And if he thought that my parents were hurting me, if they thought that this was medical child abuse, that this was monchalzen by proxy, he would have testified in court against them. He would have been like, no, like, absolutely not. He would either testify against them or he would just simply not take my case at all and be like, she's, she's in the right place. Like, you guys are crazy. And same with the lawyer, actually. And then the geneticist, he went through all of my paperwork and he was like, yeah, seems like. It seems like. like mitochondrial disease. And I do have a side note. This might be kind of jumping ahead in a way,

but I don't want to forget it. So I know at this point, obviously, you were young and your parents, like, it wasn't a conversation that they would have with you. But obviously now that you're older and, like, they know you're, you were coming on here and everything. Did you ever, like, talk to them after the fact, like, as you grew up about their mental state during this time and, like, what they were going through and what they were feeling? Yeah, it destroyed my dad. Like, Absolutely. Like my parents have like been through like some things, but like they have said like that was the worst thing. Yeah. My mom like I could just kind of see it on their faces like even through visit. And like my brother, he doesn't like show much emotion. He's autistic. But he has like um Asperger's. So he's not like he just has a hard time processing emotions. But even he like looked a little sad. And like he did not. That man does not care of. about anything. Yeah.

I'm sure, too. It was like, it sounds just like a feeling of helplessness. It's like you're going up against these people that, like you said, they're supposed to be trusted medical professionals. So it's like trying to get, I feel like it's just crazy to me because this is all coming back to like a hospital, just having pure negligence. And I mean, so much more that goes into it. But it's just nuts that it could, one place could.

calls all of these, like this whole chain reaction. It's crazy. To the point that you were in a foster care. Yes. That's insane to me. And it happens. Like it's not, it's not just me, which is terrible. And then also when my parents contacted those organizations, they gave them kind of like a set of

rules almost to follow that would help me get home faster. It's almost like at that point, you just kind of have to play the game in order to speed up the process. because if you just battle it, it's just like they'll keep making things worse. Yeah, even when, like, I was still, my parents were still in the hospital with me. Once DCS got involved, it was like two days, you know, that they were watching us. My parents weren't allowed to say anything about my medical care. They couldn't say, they couldn't talk to me, talk, they couldn't talk for me. So, like, if anything, they would just, like, it hurt to talk.

Like, I was in a lot of pain. And it was another thing that. that they kind of were like, oh, her parents are making her sick. Because they put me on Lyrica, which is a nerve pain medication. Of course, my nerve pain got a little bit better because of that medication. So it's not that my parents were causing it. It's because I'm on medication to help with it. But when my parents contacted the organization, they gave them like a set of rules.

And it was like, don't post anything on social media at all about this. Barely post on social media in general. Literally don't talk to nearly anyone about this. Like if you broadcast this, they'll make it worse. Don't talk about her medical stuff, like just a bunch of things, which were really hard for my parents to follow. Like, this hospital just ripped apart your family. Like, you want to be like, fuck this hospital. Like, this is absolutely terrible.

But, you know, they would rather have me back home. And then the lawyer my parents got was absolutely phenomenal. shout out to her. And then the geneticist, he took my case. And then on December 6, we had court. I didn't go again. And I was still in foster care. And at this time, my parents got the good lawyer. And she testified in court. This was December 6th. And my parents were granted physical custody of me, meaning I was able to go home, but not legal custody. So they had no say in my medical stuff. D.C. officers, well, DCS and CPS is the same thing, but DCS officers would come to my appointments. I had appointed appointments that I had to go to no matter what because they were in my, I was in their

legal care. Yeah, it was really not great when they would just show up to our appointments and be like, hey, this is DCS. Like your child is in our legal custody, like, you know, kind of outing us to everyone. Like, it's embarrassing. But they would show up to appointments. They would do, whatever they wanted. Like I was still a part of the state. I had like a lot of therapies at this point. I had physical therapy, which I was doing before, occupational therapy, which I was doing before, and then individual one-on-one therapy. I had physical therapy, occupational therapy, and then also normal individual one-on-one therapy. And through the individual therapy, I was diagnosed with PTSD at 13. I would have nightmares of it. Like I would have panic attacks.

Like, even though, like, my care, they kept at my original hospital. They sent me back to that one. So my care was at my original doctors who still believed me, actually. But I was diagnosed with PTSD and even going to my original hospital that did not traumatize me, it would send me into a panic attack. Like, everything was terrible. And you, like, there was that one time, like, glove smell, like, the smell. Yeah, it would trigger me. Like, I couldn't do it.

Doctors with coats, doctors with accents, which I hate. Like, I don't want them to take that a different way. Like, it's just trauma. And then I was in their physical but not legal care from December to May. And then in May, we had a two-day trial, a whole trial at the Supreme Court. It was literally a two-day trial at the Supreme Court. And since I was in their physical custody, like I had the, actual option to go. So I went to both days. I was very sick afterwards, but I went to both days.

And they had one of their doctors that were there that traumatized me come and, what is it called? Testify. Yes, thank you. They had one of their doctors who traumatized me come and testify, which was awful. I remember I wheeled myself over there and I said, like, I looked at him and I said, fuck you. And I was like, my voice was like stuttering and crackling. And he just looked down and went. And I was just like, you're awful. I hate you. I told him that many times, even in the hospital. And then we had my geneticist testify being like, like, it all says that she has mitochondrial disease. He went through my blood tests. My muscle biopsy was inconclusive. So whatever about that. But he went through all of my physical symptoms and he was like, she has mitochondrial disease.

and he testified at the second day. So the first day it was mainly like them testifying. Like they're, what is it, like district attorney, I think it is. Sorry if I'm wrong. But they had, yeah, it's called like a DA. Okay. I think, sorry. But they had her testify.

They had the doctor testify. They had the DCS workers testify. So the first day, like they thought they got it. Like they were just like, yeah, we, this is easy. And then the second day, it was like kind of our turn. So we had my parents' lawyer who was phenomenal testify. And then we also had my geneticist testify. When I was still in their physical custody, but not legal custody, they made us have a psychiatric evaluation.

All three of us. Me, my dad, and my mom all had like a psychiatric evaluation. at that they found that she does not have munchausen by proxy. My dad does not have munchausen by proxy, but they're more so focusing on my mom because my mom's there more often because my dad had to go to our home to take care of my brother. My brother was like 15 at this time. And so they were more focused on her. And he said, I forgot what he said, but he said something. And then they had him testify to that psychologist.

Yeah. And then basically just like battling everything at this hospital was trying to set up. Everything. Everything. Yeah. The eating disorder, the somatiform disorder, the monchasm biopoxy, just absolutely everything. Knocking it all out. Yeah. One go. Well, two goes. Yeah. But the second day, it was my parents' lawyer and my geneticist. And I had a lawyer, but it was stayed appointed. And she sucked, honestly. And then I had a guardian litem. Stayed appointed. I don't really like her. My lawyer was actually mean to me. Like, I don't, I don't know. But she testified that I didn't have it, but she was still like, I don't know, not really. Yeah, she was more so like passive aggressive. Like I tell her like, oh, I don't feel it. And she was like, mm-hmm. Not very personable. Yeah, not great. Especially, like someone to give, like someone going through all that. Yeah. I, that still confuses me.

Like, I'm supposed to be the victim. Right. Like, why are you treating me like this? Like, why are you yelling at me? Like, there's no reason for that. Yeah. But my geneticist, I remember he was the last to testify. And like, they were just like, yeah, we got this. And my geneticist testified and swear to God that entire courtroom was silent. He cleared them all. Like, every single question they had, like, in my entire life, I have never met somebody so intelligent. I still see him to this day.

Most wonderful person ever. Like, amazing personality, too. Like, I just, I love him. I adore him. But he literally just cleared that. courtroom and then it took like the judge about like an hour or two to like come up with the decision and I my my mom doesn't have moncheism by proxy like I was able to be in their not only physical custody but legal custody too but then after that I had to deal with like all the trauma

but I was home like I remember also during like after like I left court like they say those like big words I was 13 I was I was 14 at this time um I was 14 at this time, and they were saying big words. So I was like, did we win the case? Like, does this mean I'm going home? And my mom just looked at me and she's like, you're coming home, like you're staying home. It was just like the best thing ever. Like just like I felt so good that day.

And plus on top of all of this, you're still sick. Like you're still like not healthy. I'm still in the wheelchair. Yeah. And so technically speaking, how long were you medically kidnapped for? I was medically kidnapped from. October 30th to December 7th, which in most cases, it is much longer. But my parents did not sleep.

My parents did not stop until they got like the geneticist and the lawyer. And then from December to May, you still technically, they still didn't legally have you. It was just physical. Correct. So it all wasn't over until, from like 13 to 14 basically. Yeah. It wasn't over until May, which I turned 14 in May, but it was after that. But yeah, I still had like all those issues. After that, like we, my parents never said anything to medical professional. They were like, you're on your own with this one as in you have to talk for yourself. You have to fend for yourself. Like it's all that. And then after that, my geneticist took over and he put me on what is called like a mitococtail, which is basically all like supplements. It's just vitamins. And it's stuff that mitochondrial.

people with mitochondrial disease lack. He confirmed my diagnosis of mitochondrial disease, of Ellers Dan Lowe's of just everything. He actually added on more. And then in like my paperwork, it says like, I do not believe this child has XYZ as in like some autoform disorder. And I don't believe her mom's making her sick. So if I ever like go to a hospital and they're just like, yeah, no, and I don't believe you. I just show them that. And it's like that. But I haven't had that problem And then were you guys able to do anything against that other hospital? So with that, I would have to get another, like if I wanted to sue them, I would have to get another doctor just like my geneticist that's not through a big chain hospital. Because like the hospital that I originally was going to

and that they sent me like back to, thankfully that hospital, not the other one, that's a big chain hospital. So if they like do XYZ, they can get sued, like they can put their career, their job just on like on the line. And that's like a big thing. So we would have to find another one, which would just be so expensive. Yeah. It's just so scary that they have that much control and that fast. It is, it is terrifying, actually. But my, my geneticist, he took over and he put me on the mitochondrial, which is just supplements that anybody with mitochondrial disease needs. And I started gaining weight. I was able to do more.

I was able to go back to how I originally was before I came into the hospital. As in walking, I could walk without my walker for short distances. I was in physical therapy, occupational therapy, still that. And I was doing like the work at home. But even with that, like my, I still have like health crashes and stuff. and I was still on my feeding tube, and at this point, I started not tolerating my feeds again. Because regardless, I have the diagnoses, and I stopped tolerating my feeds again, and it was the same thing that was happening before, but I could not tolerate them,

like, just like how I couldn't, like, weigh before when I still had my port. And I was losing weight again. I was underweight. We tried different formulas. We tried different ratios of like pediolite and formula to see what would tolerate. No, I just kept throwing everything up. So I had a pick line placed, which is it's another form of a central line. And it goes like in my arm, like down like by my heart, by my jugular.

Used to have it. You can see like a big tan line from it. But I had that and I got back onto TPN, which is again total parental nutrition. So I was receiving my nutrition and my hydration through my pickline to my heart, to my bloodstream. And this was 2019 now. Sorry, I should have said that. But it was 2019 now. And after I got that, it was the first time, because I was on it long term before I was just on it for two months.

And my liver was not doing good. This time, my doctor did a different kind of lipid, which is the liver. lipid is the fat, which is hard to like process through your liver. He did a different kind of lipids, and my body reacted beautifully to it. I was gaining weight. I finally, for the first time, I was not underweight. Like, even when I would gain weight, I was still underweight. Like, I was never gaining enough. And then I was finally, and like it has enough hydration and stuff like that for me. I was able to follow up with physical therapy, and I was able to slowly get out of my wheelchair. to where I would, we look, it looked so weird, but we would go into public and we would bring my

wheelchair and I wanted to walk as much as possible. So I'd walk, I would get out of my wheelchair in public. I did not care, girl. I was, I was struggling, come on. But I would get out of my wheelchair and I would just walk around, like see how much I could walk and then I'd use my wheelchair as a rest and stuff like that. I would slowly do that until I could tolerate it. Then I was able to get out of my wheelchair with this nutrition. My liver is doing fine with it. I'm still on it. And I get my labs tested every month. Like my liver is doing phenomenal. My body's doing phenomenal. I'm not underweight. Like they check it, monitor it. I'm just doing really good on that. I'm 20 now. I've never really talked about this before. So thank you for giving me the platform.

Of course. Now I'm in a really better spot now. Yeah. Very much healthier thanks to my geneticist and TPN. So why is it so common the medically medical kidnapping? So with like the condition I have, even they've said like even if I didn't have mito, even like the ellers down lows and well again the mitochondrial disease and stuff like that. It's so hard to test for. So they're just like well you have all these symptoms but you don't have like a tumor growing you know, for your pain. You don't have this. It's hard to explain, but, and it was also because it was just suspected at this time. When I saw my geneticist, who I still see, he did a genetic sequencing test, which is a spit test. So put my spit, put it through a lab, and he could see

all my genes, like if I had a mutation, I saw every, like, everything I am, like finished and everything, like I saw everything. And I had three genetic mutations, which caused, like my mitochondrial disease. And respectfully to that hospital, like you can't fake three genetic mutations. I have a friend. She has cystic fibrosis. Okay. And she went to the hospital that medically kidnapped me. And she was kind of sick, so I wanted to visit her. And I was just like, you know, I can get over this. I can do it like this would be good for like trauma to just like, I don't know. I don't know what I was thinking, but I did it. It obviously triggered my trauma afterwards. But the resident that she had at the time was actually the resident who would see me every day.

I saw her every weekday. And she came into the hospital room to examine, like, my friend and everything. And she looks at me and she goes, you look familiar. And I'm like, and I was like a healthy weight at the time. I was still in my wheelchair. This was 2018, I'm pretty sure. Yeah, I was still in my wheelchair and everything. But she was like, are you Skyler?

like it had been a year and I was like yeah and I was like I'm home and I'm 100 pounds which not to bring up weight like I was literally like five foot like I was little I was so young at the time I was like 14 or 15 um and I was like yeah and I'm like a healthy weight and stuff and she goes hmm and then like just like that and I like that makes me so happy to think about because I know that it pissed her off so bad because that hospital was so adamant they had their doctors testify like they they would tell me every day that I'm a faker, that my parents were making you sit. Well, once you're that deep in it, it's like, you know, they probably had to. It's like, yeah, they don't want to get sued and that's a whole thing. But not that it makes it right, but it doesn't surprise me that they went, you know, to those lengths. What was I going to say to? Oh, and also I wanted to ask you, like, I know obviously like where you are now, like your health is doing much better. Did you find that like your mental health, it took like a while to kind of like get past all those things.

Like you said, I'm sure that there are times that you still face traumatic things or PTSD in a sense from everything that happened. It still affects me to this day. Like I have seen the same doctors right now. Like I see adult doctors and not my pediatric ones. Well, in gastric, I'm still transferring even though I'm 20. It's different for chronic illness. Okay. Like the transferring process from pediatric to adult is really rough to find like an actual doctor who understands it.

it, but I get scared going to doctors that I've seen since I was nine years old. Like, I get terrified. Like, it sounds so stupid, but, like, I'm 20 years old. And, like, when my mom leaves my hospital room, like, when I'm admitted, obviously, she has work. She has stuff to do. Like, I panic. Like, I have to text her.

I have to be, like, blah, blah, blah. What I was going to say? It's like, it's not even, not only do you have medical trauma, but I'm sure to some degree, it's like you have that fear of like losing your family. All the time, even though I'm 20. Right. I'm not a minor anymore. I can't be taken by DCS. But I'm just like, like the littlest things. It's terrifying. Like I'm so scared of hospitals. Even the hospital that I went to for the longest time, like I'm terrified of it. A doctor like brings up like they get, they don't even get suspicious anymore because I'm a genesis. But they might bring up something like that may seem like they're getting suspicious.

and it's an automatic panic attack. And what's sad and scary, too, is like, obviously now that you've been through the worst of it, you know how to prevent it, but people that aren't aware, it's like they wouldn't know that they would, that the way, I guess, to prevent it would be through having a geneticist, right? And then also to prevent it, a big thing is, like, how it really started was my mom not wanting me to be put on that medication that's mitotoxic. Okay. So any refusing medical care, any like, like if you move a lot, if you see a bunch of different specialist.

So in their mind, that's why they tried to accuse her of the, what's that even? Munchausen? Munchausen. Munchausen. Which is you're making yourself sick. Okay. And then there's Munchausen by proxy, meaning somebody else is making you sick. But yeah, those are the big things.

It's, I don't know if this is the right word, but I think it's like, I think it's like, like ego kind of because it's like why are you saying that I'm wrong like why are you saying that she can't have that medication right right like to a doctor yeah like I went to medical school yes and they I don't know what was wrong with that hospital and that's the thing too is that I think that's another issue is you know obviously nobody wants their intelligence insulted that's what it comes down to but at the same time you know as a parent even as a person like you should be allowed to deny something because look at all the amount of times that people are misdiagnosed. Or, you know, you just might not feel comfortable.

You might want more explanation to something before saying, yeah, shoot me out with this or do this, you know? So it's like, I think that, you know, and this isn't to speak for any medical professional because I'm sure there's, there are great ones out there, you know. But I think at the same time, that is why it's so important to be more personable because you do need to understand the fear that people have that are sick or even the parents that or the fear that the parents have as well because you know you don't know how your child's going to react and you know so many years prior to you figuring anything out you were diagnosed with like a million different things and then you're not and then you are so it's like it becomes scary

of like what does my child really have what does her body react to or not react to and then yeah it's just sad that it literally goes from zero to 100 like that to a point where it's like you are You know, you have these parents that care so much about you and your health and have been trying for so many years, you know, to get you healthy. You're still not healthy at this point just to be put into a foster care. Like, what do you think that does to a child and to the parents? Yeah. I, like now, obviously, like, I just think back and I feel terrible for my parents. It's fucked up.

Also, like, my mom was trying to help me. She took that, she took me to that hospital to help me and they did this to her. Yeah. When she was just trying to help her kid. Right. And then like at this point I said before I had like a kind of like a soft high pitch voice. And they said at that time my parents were trying to make me childlike because that's maybe like another thing with Montrazin is I kind of try to make them like younger. Like younger and more just like. Like I feel like dependent. Yes. Exactly. More dependent. And like that was just my voice. Like I'm sorry like I still I'm so pretty soft spoken and stuff. But that that that was. It's just my voice. Like they were pulling anything that they could.

Anything. And they were rude. Like in those medical documents. Like they said, oh my gosh. They said, I was barely underweight at this time. I was in the two percentile. So my body's not proportionate. And I'm 13.

Like I'm barely going through puberty. They said like a diagnosis of like a big head. What? Like they were roasting me in those. Like what did I do? Right. Like I was just like, you could say, like, oh, I was saying, fuck you and everything.

But, like, I think, like, you said, it comes to proving a point. Yes. And once you're that part and it's like, no, we're right. Like, yeah. Not the big head diagnosis. I forgot what it's exactly called, but I'm just like, I'm sorry that, like, I'm unhealthily underweight. Like, it's crazy.

The big head is what always gets me. Right. That's where you find, like, the humor in it all. That is wild. Yes. but that's it basically summed up. Obviously some parts missing, but like those are the big parts of it. And now, so now your health, it's like pretty much like stable right now.

Okay. And you still have a port, right? Yeah, I have my port and then I still have my feeding tube and everything. So you do still need the feeding tube? I use it for different reasons right now. Like the feeds that I was getting, it doesn't really work. So like if I were to get sick, like I could get it out instead of throwing it up. If that makes sense, it's like a drainage one.

But the port, that's where I get my nutrition and hydration. Okay. And through this, like it's in, I've explained it, but it's like an inserted, like surgically inserted like device. So are you doing this for yourself? Or like, what do you? Oh. Like are you having like a doctor come or like a nurse come and help?

Yeah. So every week a nurse comes and she helps. me like the port has to be changed every week so it's like a needle stuck in my like um chest like the port it's like an inserted device and then it has a little wire that goes is the port uncomfortable at all um not anymore after like it like you get used to it yeah i kind of get used to it like sometimes when i move my arm i can kind of feel it which is like uh but other than that it's not terrible but like you just like access it with a needle so like the needle can come out and and And this one is a lot, I mean, there's pros and cons, the medical device.

So it's not ideal at all. Right. But at least with this one, like I can take the needle out, which I can only do that once a week. Okay. Because I need it every day. With other people, if they don't need it every day, they don't need it access 24-7. And then how's your stomach? Like, are you able to eat normally and keep the food down?

Or is that, or you do, like, is it the feeding tube? You're using that for food as well? So I can. Like, my doctors allow me to eat. I just throw up a lot. So you really struggle to keep anything down. Yeah. Like people see me like, I'm like, oh yeah, I'm on TPN.

And then they're like, like they see me drinking coffee or eating something. I'm like, you know, my stomach doesn't work properly. Like I can keep this down for like six hours and then it's going to come up later. Okay. Like I just deal with the consequences. Like not eating. Like right now it's just so difficult. Like I said previously, like they said that I had an eating disorder.

because I wasn't eating. But at that time, I was getting my J feeds. So those were making me sick. Now I don't have that. I have my TPN. So there's nothing going in my GI tract to make me like that nauseous or whatever unless I eat something. And like eating when like you're not nauseous all the time because I'm not on J feeds,

like it's really hard. Like just think about anything that like doesn't involve our own food. Like holidays like, oh, do you want to go out? We can go get some brunch or something like that. Like everything revolves on food. Right. I don't like feeling like abnormal because of my medical stuff. But.

So explain to me with the feeding tube thing. How does that work weekly or daily? So whenever I need it really. And it's so annoying because like if I want to like drain the stuff, oh, I hate talking about this. But because like even when people ask like what's on your stomach, like I said, oh, just a medical advice. I never say the word feeding tube because it's just kind of like with people. Yeah. But with that, so basically it's not a GJ anymore. It's just a G. So it just goes into my, it just goes into my stomach and not my jejunum. We changed it because I kept having difficulties with the GJ. It just kept like malfunctioning and stuff. So my doctor was like, it would just be easier to just change it to a G because you're not using your J right now anyways. So basically it just goes into my stomach. And then you take like an extension onto it.

And then like the stuff will flow through like out. But with that it's really annoying because it has to be like liquid. Like I was going to say so like with your foods, you have to blend them? No. I just I just eat it and throw up honestly. Because even like sometimes I'll try a smoothie. And my stomach doesn't digest it to where it's like easy to like go through, you know. So I have to put.

I like thick smoothies. Yeah. And then I have to like water it down a lot if I want like a smoothie and stuff like that. And that's if you're using it through the tube. Yeah. If not, if I'm just vomiting, like it's whatever, you know. So sorry, excuse me. So how are you maintaining your weight?

With my TPN. That's where I get all of my nutrition and hydration. So like the fats that I was having trouble, like it's all, it's total. So that is like so, okay, so the port is like basically keeping you. that's like everything you need per se and then the feeding tube is there if you want to try to get more down or like something extra yeah if i want to eat because it through all my like motility scans if it goes down into my intestines it just regurgitates back up okay like some people on tpn like they have intestinal failure yeah stuff like that i don't have intestinal failure i just have

reverse motility so my stomach barely works okay but if it does work and push down to my intestine, then it just regurgitates back up. And then do you have any idea of like, is this something, both of these things, or these things that you have to have lifelong? Or you're unsure? Unsure, but I've been on it since 2019. So I'm not exactly sure. Yeah. Doing fine on it now. Right. So as long as it is working now, that's all that matters. Yeah. And like obviously it's, TPN is genuinely the last resort. Like your GI tract does he use it or lose it organ. Like, I think it's your most use it or lose it organ.

So I still try to eat and everything. It just has not works at all. So it's like nothing ever stays down? Well, like I can have like juices. Like sometimes like three to four ounces like this cup of water. Like I could keep that down. Okay. But there is sometimes to where like I'll keep something down for like six hours or something like that.

Or I'll keep it down for like a while and I'm just like, okay. like let's go. Yeah. And then I throw it up like six hours later, 12 hours later. It's frustrating. It's like your body's fighting against itself. Yes, because it gets me excited. I'm like, okay.

Like things are looking at. Yeah. Yeah. And also may I add like mitochondrial disease, it causes organ failure. Again, I don't have intestinal failure. But my GI tract is the one that it mainly like causes. Okay. I have some heart problems and like just nerve problems.

and stuff like that. Like I remember during like one of the blood tests that my geneticist was going through, he was like, yep, and here's like one that causes severe nerve pain. Like it was so crazy going through everything. And it's also annoying when people ask like, oh, what kind of mitochondrial disease do you have? And I'm like, I have three genetic mutations, but they're all numbers and letters. Yeah. Like it's just like it affects like my MTCO1 gene.

You know, I can I can explain things decent. I don't know anything about this. genes stuff at all really. No, well, you did, you did such an incredible job explaining everything. Thank you. Like I told you, it's like one of my favorite things, especially with these like more medical surrounded episodes is when people come on and they have like all this information along with their story because it really puts things into perspective. It helps you understand. Yeah. And even like obviously like as you know, I've had a couple people on, you know, with, I had the cystic fibrosis and in the pots girl that came on. And it's like it's still, if it's not

something directly that you have going on. It's, it takes questions and to understand, you know, and like, no one can really relate and get what you're going through except for you or somebody that has the same kind of thing going on. And it's a lot. And it's a pain in the ass, I'm sure. Like, you know, and it's, it sucks. And it, I feel like everything in this world can be, there's no such thing as normal, you know, but like it does suck. I feel like when you feel that feeling of, I can't just eat and keep it down. It's, it's, it's, it's, it's, And it sucks, and I'm hoping and prying for you, obviously, that one day you don't need shit and you're just eating whatever you want and it's staying down. I'm jumping in a pool.

Yes, literally. Because you can't get it wet unless it's like, yeah. And that's the other thing. It's like there's so besides, you know, what it is doing for you and why you need it, then comes the other stuff of like, well, here's the things I can't do. And it's like they obviously when it's winter or like if there's no pool around, those things don't matter. But then it's like when those things do present themselves, it's like I feel like that can also lead to, you know, I mean, to put it bluntly, like fuck with your head. Like it makes you upset. And it's like maybe not all the time, but I'm sure there's times where it's like this sucks, you know? And it. Yeah. A lot. Like even though I've been, I've been dealing with like the feeding tubes and everything since I was 11.

Yeah. It's still. It's still bothers me. Yeah. Your life. I like about like one time a week, I'm like damn. I hate this. Like I have to. to be connected to like my TPN, which is like, you know, like an IV bag of fluids and you're connected to it, to be connected to that 12 hours at night. Like that, that sucks. And then if I don't get like all of it, if I have to disconnect early or something, I feel, I feel, I feel shitty. Like, because I'm not getting my proper nutrition and hydration. And then also like, if I want to do things at like night or whatever, like it's just like to carry a backpack or some people put it on like an IV pole. I just put it on a backpack that's made for it. It has like sections to hold your pumps. It has sections to hold like your bag. Your bag is 3,000 milliliters. So it's a, it's a big,

heavy bag. Yeah, that's crazy. Yeah. Are we going to sum it up? Yeah. But thank you, Debra. Are you going to sum it up? Oh, we're going to sum it up? No, you, you did amazing. Seriously. Thank you. Thank you so much for wanting to come on and share all this. That's terrifying. I'm so sorry that happened to you, obviously, but, you know, it is so important to educate because, like you said, when you looked it up, obviously you were young. That's what I was just about to say. I feel like you didn't know anything about this. There wasn't anything really talked about. And I feel like it's not always talked about of like these kind of stories specifically of what happens if like the medical professionals don't believe you or basically going against

everything that you're saying. And even if you do have history. another hospital that that didn't really matter it didn't you know um but no you did incredible seriously thank you so much also there is a documentary on netflix about medical kidnapping it's called taking care of maya if anyone wants to do more i'm gonna i'll link that too just in case people want to watch it if they're curious thank you so much for giving me a platform of course seriously thank you you did amazing no thank you yes you're okay