We're All Insane - Bedridden at 13 Years Old

Episode Date: July 1, 2024

Claire shares her deeply personal journey of her battle with POTS (Postural Orthostatic Tachycardia Syndrome) along with the terrifying health scares she faced since the very young age of 10 years old with no understanding or answers. Claire's Links: IG: @canyoncreationsjewelry Website: canyoncreationsjewelry.com 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. So first of all, I want to say thank you for letting me come on your podcast and talk about pots and spread awareness. I think it'll be helpful to people who see it. I know that everybody's journey is a little bit different. Yes. So I appreciate you letting me come on here.

Of course. I'm excited. Me as well. So a disclaimer that I wanted to give is the POT's diagnosis and treatment looks a little bit different for everybody. So what I went through is not what everybody goes through. And I don't want people to think that just because they have similar symptoms as me, that it's their diagnosis. So I want to put that out there. And then the second thing is I may get emotional at points because I still have. I'm still working through some stuff.

So yes. And then I wanted to tell you, I encourage questions that you have because I feel like the more like insight you can have the better. It'll answer questions for people. So ask whatever you would like. I'm an open book. So my story starts in. third grade. I've always been a super anxious kid. Like wouldn't go to birthday parties when like my mom had to go with me everywhere. I was similar in that way. Yeah. I can relate. Uh-huh. So for the longest

time I thought it was just like really bad anxiety. I started getting stomach cakes at school and I couldn't get them to go away like ibuprofen wasn't working and they just started to be like more and more consistent. And so everybody thought it was anxiety. But at the time I did, um, horseback riding was my sport of choice. And I noticed even when I was horseback riding that I still felt like my stomach was still hurting. Right. And so I had so many doctors telling me like, oh, it's just anxiety or like my pediatrician at the time was the only person I was going to. And so I knew I had anxiety, but I also knew that it was more than anxiety. Right. Especially if it was happening when you were doing things that you actually enjoy. Yeah. Like I would be home. Right.

And not feeling anxious at all. Like I feel like at a young age, I was able to decipher between what was anxiety and then what wasn't. But at a young age, it's hard to like explain to people, you know. So fast forward to fifth grade, they started becoming like very frequent. Like every day at first, it was like a couple times a week. And then it became this like 24-7 just pure stomachache all the time. And if I had to describe it, because I get quite a very frequent.

a lot like what's the pain like it's not it's basically like having the stomach flu all the time because it's not like you're crampy or like heartburn it's just like when you have um a stomach bug and you just have that like ache and nausea right that just doesn't go away so um i ended up going to a therapist and starting again in fifth grade for anxiety because i was like i think everybody around me thought that if my anxiety got better, then these stomach aches would go away. Right. And now was it just stomach aches or were you actually like using the bathroom or throwing up or anything or it was mainly just the pains? It was just the pain. Okay. Like I had no no other symptoms at that point. But in the back of my mind, I think we were

always a little bit worried because my dad has Crohn's disease. Okay. And so I think that was just like a lingering thought of like that. Maybe it could be that. Yeah. But I think people with Crohn's it develops a little bit later in life. So it was surprising. but we just kept that in the back of our minds, put a pin in it. Eventually, once I was seeing my therapist for like a couple months, I am so glad that my parents advocated for me and knew that it was more than just anxiety. And so I ended up going to primary children's, which is like a great, you know, Children's Hospital in Utah.

And we did allergy tests and blood tests. And everything came back normal. with some slight inflammation, which was confusing because the pain seemed too extreme to just be a little inflammation. So the allergy test tested for like everything, like rats, you know, grass, whatever you could think of and nothing was like flagged on mine. And so it was interesting because we've always eaten well with my dad having to be on a specific diet for Crohn's, but I felt crappy nonetheless.

Yeah. And so I kind of knew it wasn't food related pretty early on too. Right. But we ended up going to a gastroenterologist. Pretty, I would say I had my first appointment, like end of fifth grade, beginning of sixth grade. And we did an upper GI, which is where they sedate you and put a camera down your throat all the way down to your stomach. Didn't see anything but a little bit of inflammation again. And so that kind of left us stumped and kind of weren't sure how to move forward.

So I got on motility meds for a little while, which is like peppermint capsules or like turmeric or anything that can just calm everything down and move food along as you digest. And it's unfortunate too because, I mean, this happens just so often in general, I feel like. But you can get all these tests and have things done and still not have answers. it's like you really can't stop until you get an answer and you don't know how long that's going to be. Right. And there's no, I'll mention this later too, but there's no doctor or at least not one that I have found that will follow you all the way through your medical journey. Like especially specialists, right? They're only meant to really study one thing. Right. It's like send you here and then here. We can't help. So let's try this. Right. And offices don't share documents all the time. So again, I'll mention this later, but we ended up accumulating like a binder for. of like my story so that because every time I go to the doctor they'd be like so what's going on and I'm

like so do you want me to start from like fifth grade or like my more recent stuff and let me show you what I've already had right yeah right um so it just became kind of a puzzle to like track down different doctors and yeah um so eventually I just kind of started to cope with it there was nothing that really helped but I just decided that I mean there's nothing I can do so I just have to keep living life as a young teen um I started playing volleyball I think also in sixth grade um just like a rec league volleyball and one of the days um I was playing and I completely blacked out like could not see like I was still conscious so I didn't faint, but it's like when you stand in your vision just goes out. And it took me a minute to get it back, which was concerning. I had to step off

the court and just like take a couple of minutes. And I was like, this is really weird. And you know that feeling before you pass out when you have like your head's just kind of weird. So at that point, I realized that there was something more wrong. But it didn't take until like a couple more, I don't know, seasons or games in that I realized, like, I can't really play anymore because I don't have vision. I'm about- So that kept happening. Okay. It kept happening.

Another thing that we notice is I would go outside and lay in the grass and fall asleep in the sun. Like, I was so fatigued, which I think growing up, everybody probably just thought it was, what is it called? When you're, like, growing up and you need more sleep. because, you know, your body's changing. Right. But that, it just seemed like I was sleeping a lot.

Like falling asleep outside, I would get like burns in the summer because I would just be laying out there. And my parents would come and look for me and I'd be asleep in the backyard. Yeah. So that's how we knew that the chronic fatigue part of it was starting to take place. I stopped playing volleyball, but I was still tumbling. I've been or I did gymnastics since I was little. And so that was one thing that I really, really didn't want to give up.

Like, I love volleyball, but not as much as gymnastics. And so I kept tumbling. And I had a, my tumbling teacher mentioned once I started telling her about my, like, head and stomach symptoms. She was like, have you ever heard of pots? And we hadn't. But I went home and looked it up. And it didn't really fit like my criteria, I guess. Right.

And so I think we just took note of it. put it in the binder and left it because it didn't really fit what I was going through. But then in, I'm trying to remember if you were, I think it was beginning of eighth grade. I was still doing PE and stuff like that because I didn't want to be like different than anybody else. And I think with stomach stuff, like, I don't know, just PE teachers in general, I think when girls start to get their periods and stuff, it's like, well, you can still exercise and whatever. Also, too, I don't think people that don't deal with stomach issues or stomach pains, I don't think they understand how crippling it really can be. And especially when it's something that's constant, because I grew up with stomach issues

all the time. Some just because I had IBS, others because I had anxiety really bad. But I don't think people realize, like when you say you have a stomach ache, sometimes it's not just like, oh, I just have some aches and pains. Like, it can be crippling. Yeah, especially when there's nausea involved. Right. Because for me, like, well, and I'm sure for everybody, when you're nauseous, there's nothing else you can think about.

No. So I don't know why, but I kept going to PE. One day, we had to run the mile. And the only thing I really remember about this morning is not eating as much as I probably should have. Like, we always had cereal on Friday mornings. And I had cereal with like no protein. I'm sure because I was like anxious to run it. So I probably wasn't hungry either.

but I got to school and I definitely didn't run the mile. I was walking. And once I was done, I was walking back in the school and headed to my locker and I fainted for the first time. I was, I just remember walking and both of my shoes fell off, but I wasn't in the right headspace to realize what was happening because I had never like fully fainted before. And I just remember telling myself, like, I just need to make it to the next class. Like you're just in that weird headspace. And so I didn't make it all the way to the class. I ended up walking past my locker because I couldn't see. And I bumped right into a table that they had propped up like before lunch and basically hit my head and fell straight onto the ground and fainted for the first time. So I had

somebody that helped me get to the office and the nurse was confused because this never had happened to me. But then again, like, I'm sure there's kids that think after exercise. Yeah. So I don't think anybody thought too much into it until it started happening like more and more like in the grocery stores or I would just start walking and then get dizzy and have to sit wherever I was. And so that's when the pots started coming into play or like the pot's symptoms because when you Google pots, it'll say you get lightheaded when you stand up. And that at that point, that was the case for me. Like not only was that the pain, it was like migraines now or just being lightheaded or like blood pulling in my feet. Like my legs would always just be purple. Cold hands, cold feet. I'm trying to think

of what else at the time. I think that sums, that was a majority of my symptoms. So we reached out to a Potts doctor and on October 20th, I was officially, or October 20th of 2015, I was officially diagnosed. We did what's called the poor man's tilt table test. So you lay on the ground. I can't remember for how many minutes, but you have, you, they track your heart rate. Okay.

And then you just stand up without like going from laying to, sitting to standing. And my heart rate jumped from like, we realized my resting heart rate was 120 after wearing a Fitbit for like a month. Once doing this test, it went from 120 to high 190s, maybe 200. And so we knew that like there was definitely something wrong with like my orthostatic intolerance. Right. And so he pretty much diagnosed me there at the office. And at that time, POTS wasn't very well known. There wasn't very many people. And explain to us what it is exactly because I've heard of it, but I don't know what it is.

So it's postural orthostatic tachyocardia syndrome. So basically you don't have enough blood volume. I'm trying to figure out how to word this. Like you don't have... Come on, doctor. I'm just kidding. You don't have blood going where you need it, essentially. And so once I got my...

diagnosis, I was certain that that's why my stomach hurt because it made sense. I wasn't getting blood flow. So I wasn't getting blood to digest food. But even after starting like pot's medications, I didn't notice any relief with my stomach. I did infusions every week for a while, just IVs because you want to up your blood volume. So like anything with salt is important. And I felt like, the salt made my stomach hurt worse. And so I was confused on how they fit together. And so I think at this time I was still going to the gastroenterologist, but I was like getting too old to go to like a pediatric gastroenterologist.

And so we were just all stumped. There wasn't really, I did like all the scans and everything. I ended up getting a colonoscopy because again, Crohn's was still in the back of my mind. And that came back. clearly clear. And so it was such an invalidating time because it was like I'm going through this pain and whatever, but nobody can see it, especially when I was still like really active. I have so many pictures of me at the doctor's office doing like backbens on the little waiting table. And so you would have never known like how sick I really was on the inside. So we kept going

to different pots doctors and weekly infusions. Um, at this point, I was still waking up for school and getting fully ready and then not being able to make it out the door. So I would put my backpack on, be ready to go and then just not, not be able to do it. So I would end up just staying on the couch for the rest of the day. And there are some days I could make it in for like the morning and then my mom would have to come pick me up and bring me home. Yeah. Like it was never a full day. I feel like after I passed out, there was not a full day that I ever went back to school that eighth grade year. And was that just because of the dizziness and the feeling that you would have?

It was mostly stomach related. Okay. But the dizziness definitely, just all of it. Like you just feel like you have the flu. And so you felt like over the years it was getting worse? Mm-hmm. For sure. Like more symptoms were developing.

And that was even with the medication. Mm-hmm. Okay. Yeah. So it was just confusing. No one really knew what to do. There was a couple days that I would go to school. school and when my stomach hurts really bad, sometimes my legs completely, it almost feels like paralyzed.

Like can't move them, can't seem to like get up or like do, I don't know, do what I need to do. Would they go like numb? Not numb, but like I just couldn't like, I can't like lift them when I'm in like that much pain. Yeah. And so I remember one day I tried going to school and I made it like half the day. And then I was just felt awful. And so my dad. had had to come to my middle school, which I feel like you're already kind of embarrassed of everything when you're that age, and literally had to lift me out of my chair. And so ended up going home, and I'm pretty sure that was the last time I ever saw my middle school. Like, I think I always thought that I would go back, but I just wasn't sure when. Right. I think I thought that this was

something that would pass eventually, and then I'd be able to just carry on as normal. At this point, I was going to the ER like once a month just with stomach pain. Like it would get so bad to where we couldn't control it and had no other option. So it became frequent to a point where I knew the names of ER doctors and had like preferences of who would treat me there. And so I, the only thing that would help me is like a pain dose medication or medication and then an infusion. And so I would basically show up.

say I know what I need. Yeah. And then I'm good. And I'm sure for a while doctors were concerned seeing like a young teen girl asking for morphine. But like that's really the pain I was in and like the only thing that would help get rid of it temporarily. Yeah, I started going to the ER more and more.

At this point, we kind of decided that school just wasn't an option anymore. It just didn't make sense for me to like keep trying to go when there were other options like home and health. Right. So that's what we ended up signing up for. I would have a teacher from my middle school come every, like, once a week and kind of show me how to do my work. And then like, I would say I still got it turned in, but most of the time it was never complete because I would sleep like, I don't want to say 12 hours, but pretty much. Like I would wake up, try to eat breakfast, go back to bed, sleep all afternoon until like, and then get up to see my siblings, do whatever homework I could, go back to bed till dinner, and then go to bed, like, right after dinner. So, like, my days were nothing. There's, like, a whole block of my life that I just don't remember.

And I'm sure that's because of medical trauma, but also because, like, literally I was doing nothing. Yeah. So eventually during that same time, my grandma passed away. And so things were just hard all around just with my dad's health and then my health and then this happening to my grandma. But I did have something kind of crazy happen. I was laying in bed one night and I saw this like glowy figure in the corner of my room. And I, if you had asked me at that time if I believed in like ghosts or angels, I would have

said no. But like this felt so surreal just being around the same time. that she passed away. And it was like a very warm, comforting light that would come close to me. And there was no way with how the lights reflected from the street into my room that it could have been a car. And so it just kind of weirded me out. Yeah. It started happening more and more. And eventually I ended up taking a picture of it. And I sent it to my best friend at the time. And she had the picture for years. And so that to me like showed that there was definitely something there that night, whether it was my grandma or not. Like, I remember going to, like, going on

Reddit and asking the different, like, people, the difference between like an angel and a ghost. Right. But it just got to the point where it freaked me out and I just, it ended up going away eventually. And then my grandpa, um, that lived a couple states over, ended up sending me a little opal angel figure. And so I was like, okay, this is weird. It's like comforting, but also like what are the odds because he apparently found it on the side of the road that somebody was selling. And it was like, I thought of you.

And I was like, why me out of the other grandkids, you know? So I just thought I'd mention that because. No, I love that. I believe in all of that stuff for sure. Good, good. I just feel like during that time, it was probably an angel or something. So that's a whole story in itself. But eventually I mean, this ball just kept rolling of nothing.

Like I would go to a new specialist and we would be pretty sure that I had whatever they were studying at the time. And then I would get the testing for it and then it would come back negative. Or I would get the procedure done for it and it would come back negative. So we kind of, I just stopped chasing it for a while and just was home all day every day. I started to make sense of my pain indicators. So like one thing that would really help is like I noticed when I would sit with my feet up, I immediately felt better. And so that's how I started coping or I can't remember what it's called,

but there's something in therapy to where if you start feeling like panic attack that you can smell different fragrances. It's like name five things you can smell, five things you can taste like that type of thing. And so I realized that peppermint oil became like a thing for me that helped get rid of my nausea. So I carried it everywhere. And my parents started noticing like my cheeks would flush and I would get dilated pupils and like shakiness. So I basically developed this like chronically ill personality because of it. And so I remember changing like my whole social media, like my usernames and like all of the content that I would post on social media was about me being sick. Like I no longer identified with this athletic girl that loved like outdoors

and sports and whatever. It just became like I am sick and this is why I will be for the rest of my life. And how old were you at this point? I was probably 14. Okay. Yeah. So pretty young age to just not necessarily give up, but like pretty much trying like stop fighting. Well, you had to. Yeah. Yeah.

So I, at that point I had like pretty much no friends. Like there would be people that would come and visit me every once in a while. But it kind of felt like when I was at my worst, people would visit for like a picture on social media pretty much. I would have people that would come and like bring me cookies or whatever, which I was so thankful for her to like finally have friends there. And then they would like take their social media picture, post me and then leave. And I think at that age it was probably just them like wanting to look like a good person for social media. But looking back, it's just kind of crappy that like there wasn't really any like group of friends or like,

There was a couple individuals here and there who would reach out. Just like no real support. Oh, yeah. Yeah. Like besides my family, I think also when you're out of sight, you're out of mind. Yeah. And so when I would see kids go to like dances or just anything at school, I was confused to why I was, people were never texting me or I would never hear from anybody.

But I mean, it kind of makes sense at that age that they wouldn't fully understand what I went through. And I think we just had such different priorities at that age, like me wanting to. to be able to go to homecoming or whatever and them complaining about like boys and stuff like that. And for me, I was like, I wish that's what I was worrying about instead I'm worrying about like a procedure I have the next week or like, how I'm going to feel that day. I'm going to get up. Right. Yeah, exactly. And like I would try to get up and go to different events and then have to cancel

on my way because I didn't feel well. And so it just was super isolating. And the only people I really had were my parents and so. siblings. So that was really, that was like probably the hardest thing about being sick at that age. And then I eventually started getting rumors made about me at the high school that I was supposed to go to. So my freshman year of high school, I showed up to the school and I recognized somebody that I hadn't seen in years because at this point I missed my eighth grade 8th grade, 9th grade, and, well, at that point, it was the first day of freshman year,

so I had only missed those two years. But I walk into school, recognize somebody, and I go up to give them a hug, and they go, Claire, I thought you died. And I was like, what do you mean? You thought I died. And so there was just this whole group that literally, like, nobody ever cared to reach out to know that I was actually still alive. You know, but yeah, it just became like the thing that I was the sick kid and I didn't,

I didn't like that. It's just uncomfortable because you just get treated differently. Like, yes, I want to be, I want it to be recognized. I don't feel well and can't do the same things as everybody. But also at the same time, I don't want it to be like, I don't want to be that kid. I think too it's hard because at that age there definitely is a lack of sensitivity, especially due to like lack of knowledge. And then like you said, all their priorities are different. Like they're young and living. And I think it's probably a quick thought of like,

oh, where is she? Oh, okay. On to the next thing. You know, it's just they probably weren't even, it wasn't even in their mind. Because you said out of sight out of mind. So. Right. And my mom and I had a lot of discussions of like people still care for you. They just don't see you. But I mean, it's hard when you see like it is hard your old best friends hanging out with a whole new group and you're living two completely different lives at that point right and it's like while you can understand to a certain degree why it might not be their responsibility you still are going through everything you're going through and want to feel that support and like you still have friends even though you can't be at certain events or be at school all the time right and like all of my friends at that age were like nurses that I

like started to know and like you like Like even people with pots in the pots community, I kind of was still hesitant to reach out to them too because I'm glad that there's a lot of support groups, but that also didn't feel right to me because I felt like that when I would go, it was kind of just for everybody to complain and try to like top each other on like who had it worse. And I also didn't like that because I'm like, we each have our own experience. and as much as like I love that there's a community, I also don't feel like there's very much support even within, you know, that community itself. And so I just completely isolated from friends and not became okay with it, but just kind of realized that at that point in my life, that was going to be the case.

I did end up getting like the more that Pots became more. more well research, I would get direct messages. And still to this day, I'll get people asking about, like, doctors and stuff that I see. And so I literally think it's because of, like, the hashtags and the pictures and stuff that I would use. And so I'm glad that I was able to help those people, but I still just kind of kept myself away from everything. At this point, I wasn't really eating because my pain was. super bad. And so I asked my, my mom and I had kind of talked about how comforting, having a feeding tube would be. At this point, I had a pick line and we weren't using it for, we were using

it for hydration, not what am I looking for, like food or nourishment. And so it was a little line. I still have the scar from it, but it was deep into my artery. And it was basically like constant IV access because my veins started giving out. Like wouldn't work for blood draws, when it worked for IVs, there's just so much scar tissue from all of the IVs and everything I had had. 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 podcast. And that was because you just weren't eating enough and drinking enough? I think it's just the amount of like needles and things I had stuck in my body that this scar tissue developed and there was just no way to get access anymore. So I already had like a physical, like that to me when people break their leg, right, their cast is what shows them being sick. And I felt it felt kind of validating like having like a physical medical device on me because it showed like when I was sitting in a wheelchair kind of the reason for it

because the looks and stuff that I would get just being pushed around in a wheelchair were crazy. Like I would have older people just look and like stare down at me with very condescending, I don't know, behavior towards me. And I think a lot of people probably saw a girl that looks like she's fully capable, just sit in the middle of the store, like probably look like I'm throwing a fit when that wasn't the case, like at all. So again, it was nice to have that. And then I really pushed for a feeding too because I was just done like trying to eat.

it got to the point where like I would have a protein shake in the morning and then I could only drink like a little bit of it and I still have like PTSD from Gatorade and and sure protein drinks. I just can't do them anymore. And so my gastroenterologist ended up agreeing and we placed an NG tube. So basically it's natural gas. I think it's nastrogastric tube. So they put it down your nose and you basically swallow until it hits. to your stomach. And then I had like a pole that I would carry around all the time that had

a feed that was constantly going. I had a love, hate relationship with it. I love that I had no pressure to eat. I could take medicine on, um, without eating. Was that uncomfortable? Yeah, it was in like when you would shower, you'd have to like replace the tape and like my skin on my cheek ended up getting really tough from constantly re-taping. But also when you would like flip your head upside down to wash your hair, it's weird stuff that I still do, like holding your breast so that the tube doesn't come out of place. So you would keep that tube in all the time. Yeah. So it would stay in. And how long did you have that in for? I had it on and off for like a year. I think I had. So I had the NG tube. And

And then my stomach was still hurting. And so we just ended up deciding to bypass my stomach and get an NJ. So it still goes through your nose, but instead of going to your stomach, it goes to your dejunum. Couldn't tell you where that it is in relation to your stomach. But we just thought if there wasn't like food landing directly in my stomach that maybe that would help. And I think it helped a little bit as far as the nausea by not having this.

food sitting in the bottom of my stomach, but it still didn't go away completely. And so, yeah, that tube stayed on for a long time. And again, I think I liked it because it was validating physically, but also there's a lot of pain that comes with it. Like, I would be sleeping and the little connection piece would pop off and I would get this just foul smelling food, like tube feed all over. And it basically was like you would make it like a baby bottle where like you would take a scoop, put it in water, mix it around, you would turn on the pump and it would pump through throughout the day. I slept with it. So I became really used to it, but I would get like tangled in cords all the time or like I had a neighbor dog that pulled it out once. And so it just

came with its own issues. And so eventually we decided to get a, G tube placed in my stomach. So instead of it being in my nose, because eventually it gets to a point where your nose just gets inflamed from constantly having a tube back there. And it's uncomfortable because if you ever throw up, it comes out with it. So you would have to, like, when it comes past a certain extent, you just have to pull it out because it's not where it's supposed to be anymore. Okay. And the NJ tube specifically had to be placed by X-ray only.

Like the NJ or NG, I could pretty much get back to where I needed it, but you can't tell where your dejunum is without an X-ray, you know. So we just decided it wasn't practical anymore when in and got a G-tube. That, again, was probably one of the best things I could have done. And what was the process of that one? Um, basically they create a hole in your stomach and the tube sticks right out. So I have like a scar that just shows like right where, right where that tube was. It's actually in the shape of a heart now, which is kind of funny.

Um, but yeah, it was the same thing with, um, tube feeds pretty much just without it being on your face. Got it. Um, and it was nice because like I could go swimming and stuff without like, you could go in the ocean with an NG tube. but obviously with like wearing a backpack and with waves knocking you and with that long cord it's just kind of nerve-wracking. Yeah.

So it was so nice to be able to like swim and stuff and not worry about my tube at all. And I think at that time I started becoming more dependent and kind of realizing that I could cope. You like accepted this way of life basically. Yeah, totally. And like this tube to me was just a life. saving device. Like, I don't think I really ever saw as something to be, like, embarrassed of. And there was even a time with my NG tube that I loved makeup and beauty. And I would try to use, like, the tube to my advantage of, like, setting me apart from other people because I was, like, as

embarrassing as it is to have, like, a physical medical device on your face and, like, you get a lot of looks for it. It's also, like, I'm going to own this and make something cool out of it. Right. So, yeah, I had the G-tube and then eventually I ended up getting a J-tube. So, again, G-tube sits in your stomach and a J-tube sits in your jejunum. So we ended up moving it. So I have two different, like pretty big scars from where that was. Around that time also, my pick line, you have to, every week, like, take off the tape and see how much your vein. has pushed out the tube and it has to stay within a certain measurement.

And I just got tired of wrapping it every time I would shower. Thankfully, mine never got infected. I know people who's dead, but it was just became kind of irritating to have it for so long. And so I asked my doctor for a port-a-cath, which is what they put in for chemotherapy patients pretty much. it's like the size of an eraser back. It's implanted under your skin and the tube flows into a vein that connects to your heart. So that I still have it. It's almost six years old now.

I use it for IV access that I can do at home now, which is really nice. But yeah, I would say my tubes and that port was like the best thing I could have ever done to have like more of an independent life. I could start going back to school a little bit. I ended up changing schools from the one that I was supposed to go to after that experience on the first day. Realizing all of those rumors about me, I kind of just didn't feel like I fit in anymore. And so I ended up rewriting my own script, as I call it, and I switched to the school that

my dad was a counselor at so that that way I was familiar with the teachers and nurses. and my dad was there in case I needed anything, but I didn't have to worry about like the rumors and the drama. Right. So that was also a really good decision for me because I think I could start to create my own personality outside of being sick. Like I was known for other things and like I could share my medical journey to people to like my close friends, but it wasn't, it was with my own discretion, I guess.

Like I could choose when I was sharing it. So I started going back to school 10th grade part time. So I would take my little packets up to the library and I would sit in the library the whole day because I still couldn't do sit down classes because my pain was just too distracting. And like I would have I would have had to like leave the classroom a bunch. And so we just decided that if I could take one like class of one class period being like a library. aid and then the rest of the day I would just do my packets. It worked out like perfectly. Yeah. And still like allowed you to be there. Yeah. Yeah. So my dad would come and pick me up like halfway through the day during his lunch break, take me to school. And then I would stay there from like noon to

to whatever when school would get out. So it turned out to be ideal. But obviously at this time, I'm still having my pain. Later that summer, I am. ended up getting tested for malls, which is median arcuate ligament syndrome. So basically, you have a branch of ligaments that are supposed to be separated. And basically, mine were like laying on top of each other, compressing the blood flow to my stomach. And so once I got that CT or I can't remember exactly what scan officially diagnosed me with it, but it was the highest compression that they had ever seen. Wow.

Yeah. And so my family and I were pretty certain that that's what was causing my stomach pain and nausea. And then was it a doctor that suggested the test? Yes. Yeah. So my Potts doctor basically worked with a group of specialists and as he was learning more, I would be sent for more testing.

Got it. So essentially there was a point at my life that I was pretty much a test on me because I hate saying that. But I wasn't in school. And so it made sense. that I would just be at the doctors once a week trying new tests because at least I was still like digging away at possible root causes. But again, that came with its own issues. You know, I'm sure I've had enough radiation, like way past what I'm supposed to just with

everything, all the tests and stuff that I did. But yeah, once that came back with like constriction, or constriction compression issues. we decided to go ahead and operate. The surgeon was in California. At this time, my mom was working full-time. She's a boss lady and was holding down the fort at home. And so my dad flew me out to L.A. And I had the surgery.

So basically they went in. I have a huge scar going down my midsection and opened me up really, or I don't know if they like put a stent in the artery or if they just took the artery that was compressing the other off of it. Okay. I'm not exactly sure how it works and I didn't Google it. Don't want to know. Yeah, don't want to know.

I don't want to see the videos. But it's a pretty decent scar. It's probably like five inches going right down my stomach. And I woke up from that, I think it was a five-hour surgery. and before I went under every all the nurses and doctors were telling me like when you wake up you're not going to have any pain you're not going to have any nausea like it's you're basically going to wake up a new person aside from like a surgery pain right like you're going to be sore um but they were telling you that this would fix your problem yes yes um and at that point

i don't even think i cared about like pots is something that is chronic that is going to be you're going to have for your lifetime. But for my, I was like, as long as we can figure out my stomach pain, I'm okay with like the dizziness and the headaches because they were bad, but they weren't as bad as the stomach pain and nausea. So I woke up from surgery and felt the exact same. Really? Yeah.

And the nurses, I feel bad saying this now, but I feel like looking back and just with the out of therapy I've had, I can say that I was being kind of gaslit because I would have nurses say, oh, you're just having phantom pain. Or like, for some reason, I feel like they thought I was nervous to say that I wasn't in pain, which if I wasn't, I would gladly. Right. You'd be happy and relieved that it's gone. I would be overjoyed. Yeah. And so for days on end, people would just be like, oh, well, you'll wake up with no pain tomorrow. Like once you're like surgery, soreness goes away, your pain will be gone. And I remember I had this one nurse and she was really nice, but I just kind of remember being annoyed by this. By day two or three, they want you to start

eating and I still did not want to eat because at this point, once I had gone under for my surgery, they were like, let's take out the tubes because you're going to wake up with no pain. So you'll be able to eat like normal again. And so that sounded good to me as nurse. as I was to, like, lose my tube. I was very confident in, like, the, in my head, I was like, they wouldn't do the surgery for no reason. Right. So I'm assuming if I take out this, like, life-saving, relieving device must be for good reason. So I didn't have these tubes to feed me anymore. I pretty much only had, like, an IV drip, um, of normal saline solution. It wasn't really, like, pain. I mean, I had like a pain dose, but basically they were trying to like wean me off of it

to see if like once all the pain medication and the shortness was gone, if the pain was still there. And the nurse told me that I had to eat. And I, deep down, I knew that I wouldn't be able to. And they begged me that whole day. Like, is there anything that sounds good that you will try to eat and I and I could not think of a single thing that didn't sound like nauseating. Yeah. And so my dad ended up going to Starbucks and got whatever and brought it back and usually I would have, I would eat it. And I couldn't even look at it.

And by the time I finally ate like probably one, one or two bites, I just threw it back up. And I, I can't remember what the, I think the dog. doctor said that it was probably just because of like the medication I was on. But when you go through your own health issues, it gets to a point where you know what is caused, like you know yourself deeper than anybody else. And so at that point, I knew that the surgery didn't work, but I was still trying to remain optimistic for everybody else because I think all of us got our hopes up so high that I didn't want to say, I didn't want to be like a Debbie

downer and say that it didn't work, even though realistically I knew that that was the case. So I ended up staying in the hospital for, I think I was there for six days. So they eventually released me and I was, I'm pretty sure I just like forced down some food so that I could go because there's different criteria that you have to. to me before you leave the hospital. I definitely having a scar down my midsection kind of had to teach myself not how to like walk again, but how to walk with a scar that big again. Because as your scar heals, you get like really itchy and I don't, you know, your skin is

growing and getting used to having this huge like scar tissue right down the middle. and so for a while I walked with like a hunch because if I would straighten up it would pull on that cut or scar and so that took a while for me to get like used to and comfortable with but once I ended up going or leaving the hospital we headed to LAX and at this point I had no physical indication any more of health issues because I didn't have my pick line in. I had a port, but it's under my skin. Like, I don't know if you can even see it. It's like a tiny little bump, but like you can't see that under a shirt. And so again, I got to the point where these adults in my life were questioning the validity of my illness because POTS, again, is an invisible

illness, just like you probably wouldn't be able to see any physical ailments on somebody that has cramps, right? And so I was walking through LAX and my stomach was hurting as well as my scar. And I asked one of the airport employees for a wheelchair. And she literally looked at me and said, are you sure you need it? And I pulled up my shirt and showed how I was literally wrapped in gauze. And I was like, I listen, I just had like a major artery surgery and I cannot walk from gate to gate. And so she kind of reluctantly gave me a wheelchair. But even then, it was just kind of sucked that. I'm like, I'm leaving with pain, but not only that, like, now I've, all of my physical indicators of like being chronically ill.

Like to explain yourself. Yes. Yeah. And so it went right back to where I was in sixth, seventh grade to where I looked totally fine and I act totally fine, but I don't feel totally fine. So I ended up going back home. I don't really remember much from that summer that really stood out. and yeah, kind of life went on as usual or as my normal looked for me.

That was still going through like procedures and tests and whatever. I had a follow up with that surgeon. I think it was just over the phone, but I ended up getting an apology from that doctor saying, I'm sorry that this didn't work on you. This is probably like six months out. But he basically said there's still a chance that your pain will go away. And so I think I held on to that.

And it's just hard because at that point, like as you're still going through stuff, you want to be able to process and work through all the traumas that you have been through. But you also know that it's like not the end of the road. Right. And so, yeah, it was this weird in between time. of like, I'm going to a therapist to work out, like, my medical PTSD trauma, but also, like, this is not the end of the misery. So I just went through, I think I officially started going back to school, my 11th grade

year, started meeting new friends, finally had, like, a group. School was hard at first because I had gone years without being able to sit in a chair. Usually when my pain would get bad, I would have to, like, lay flat with my knees up, which I still did. I had, like, special permission to go lay down or whatever, which is also hard when you have, like, high school age kids that also don't get chronic illness or understand it at least. And so there would be times that I think I was worried about how people would judge me when I would like need certain things because when you're in that much pain, you kind of feel like you, the pain is so demanding that there's certain stuff that you like

need to even be comfortable. So like I even felt bad for my siblings because I would have them. I'd be like I need a heating pad or I need whatever. Like you would kind of have to drop whatever you were doing to like help me before it got too bad or else I would end up in the ER. So I think that was just hard for a lot of people around me to, like, learn about because even, like, love my grandparents dearly, but even my grandparents, I think had a hard time understanding that, like, I still felt crappy 100% of the time. Like, I never, it got to the point where, like, I didn't even know what life was outside of a stomachache because it was always there. Yeah. So I would have people come up to me and say, how do you feel? And I would just, I think my default was just, I'm okay, thanks.

And they would say, well, you look great. And I'm like, thanks. Like what is chronically ill supposed to look like? You know? Yeah. I think that when we think of like a sick person, we think of somebody in a wheelchair or like with the cast. Yeah, noticeable signs.

And so I again just started having like a default answer for everything because it was just easier to not explain it than for people to ask like, oh, but I thought that that surgery helped. And I'm like, maybe it helped my headaches a little bit, but it didn't make a difference with my stomach at all. So yeah, those days were still very frequent and I still would have to use a wheelchair every once in a while. I know that on my, I'm jumping back a little bit, but on my 15th birthday, I didn't really have any friends. And so me and my cousin and my mom got a hotel downtown Salt Lake City and stayed the night, went to the mall the next morning. Like within the first like 30 minutes at the mall, I had a wheelchair. And you would be surprised the looks and the comments that you get just sitting in a wheelchair. It's like, do you think at 15 that I want to be sitting here?

Like, you feel like such a spectacle when you're in that situation. And so it was just so frustrating that like grown adults around me would make comments and stuff like that. But I was kind of able to block that out and just know that like people that live, you know, my family that lives with me knows what I go through. and that's kind of all the validation that I needed. Eventually, once I did start meeting people in 11th grade again, I ended up meeting or getting in my first, like, real relationship

where I was experiencing dating for the first time being sick, which is kind of I still had limitations. And so there were still things I had to work around. but because I didn't have any experience of what a relationship was supposed to be besides my parents' very loving relationship, I think for some reason in my mind, I thought that obviously a high school relationship is going to look different than like a marriage. And so I had this like amazing example for my parents, but I didn't have the experience of actually dating. And so I settled for a lot of things that were horribly controlling, I'm sure, emotionally, mentally abusive with gas

lighting. There was something that happened in that relationship that definitely, I still deal with the PTSD from it today. But it was hard because then again at that time, I had nothing to compare it to because I had essentially sat out of life for three years, didn't get to experience. what everybody else was. So that came back as PTSD later, which I'll get into. But I ended up going through my 11th grade year. I think I ended that relationship like beginning or end of my junior year. Because once I went into my senior year, I just had like such a great year.

that was 2019, 2020. So as I was starting to get back to normal life, like I still had pain, but I was just living with it, that's when COVID hit. So I was finally on track for graduation. I had basically done it completely myself. Like I had tutors here and there, but like I had to work overtime to like teach myself everything that I had missed pretty much. And so I was on track for graduation and we get to April or March and COVID hit. So I just ended up doing what everybody did during quarantine, just doing school over Zoom at home. And in May I ended up graduating.

But I still have such a hard time thinking about it because like I had already missed out on like so many homecomings prom. activities, friends, life that you're supposed to have when you're 16. And now I didn't get a graduation either. After, like, I worked really hard to be able to, like, graduate with my class. So that was really hard. Because I felt like I deserved it after, after, like, working so much, you know, to get there. So that was hard. But I ended up signing, I ended up getting a, acceptance letter to a school that I wanted to go to. About an hour out of Salt Lake Utah State University is what it was called. So I basically, between COVID and when I left for school, I realized, I think when I was

little, I always wanted to be a gymnast. But as I got older, I realized that that wasn't really an option anymore, being sick. But I've always loved art and being creative. So I started making jewelry my senior year towards the end, which was perfect timing with COVID because it gave me a distraction of like I could go out and I just made jewelry out of my dad's garage. Like I'd steal his tools and just experiment for hours and hours. And that summer I ended up making a TikTok that went viral.

Oh, awesome. Yeah. So I started. This was the first ring that I ever like made. I love that. Thank you. by myself. And I was just making them for myself. And then once that video got some traction, I started getting questions like, oh, where do you sell your jewelry? And then I was like,

oh, I think I can make something out of this. And so it turned out to be perfect because I think the dream that I was chasing, since it was no longer an option, like this felt like I had finally found my niche. Right. And so that whole summer, my new business did. really well, which was super fun. I had people from all over the country and even world buying rings. So that's where that started and that like my business got me out of a lot of tough times going into college as well. I think too it probably was like a good distraction for you, just from everything that you had dealt with over the years too. Like you finally found something that you were able to do and enjoy again. For sure.

Yeah, it was like the one thing that I was like passionate about again because like the horseback riding got taken away from me. The volleyball got taken away. The tumbling got taken away. Like the more physical activity type stuff. Right. Yeah, exactly. So it was an amazing release to be able to have. But yeah, I started selling on Etsy and TikTok and I look back on that as like one of the best times in my life or like one of the most transformative because I started learning more.

about myself outside of my illness and like what I was capable of. Like who you were then. Yes. Yes, exactly. And what I had dreamed of in a different way. Exactly. Yes. So fast forward to my freshman year of college, I move away. This is the first time I had really ever gone without my parents because being sick, I always had the safety net of knowing like my parents were always there if I need them. But once I moved away, it wasn't, it's not like I can call my mom.

call my mom and have her come pick me up, you know? So I just sat down all my stuff in my dorm and kind of was like, all right, I'm on my own. And so it kind of just makes you realize like when you're chronically ill at that age, like you no longer have, like you have support, but you also have to like start taking care of yourself. So you don't have anybody to like run you meds in the middle of the night or like bring you whatever you need. And so I think that was also really, um, like that was a big period of change in my life is learning how to like take care of myself. Were you nervous at all? Oh, for sure.

Okay. For sure. I would call my mom like once or twice a day. I still do. But I kind of had to start navigating my health stuff, not by myself because my parents would still help me like decide what we needed to do next and where we needed to figure out. But like that was definitely the biggest time of like taking myself to my own procedures, like going through therapy not only for what I had been through medically,

but now my like PTSD related to my relationship as well as medical PTSD. And so it was just like a big learning curve of being an adult as everybody goes through, but just on a different level because I was chronically ill. So that was challenging. But then mid-freshman year, my doctor, called me and suggest that I get another scan to check for constricted blood flow. So I did. The scan showed that everything was functioning pretty normally, which again is always a slap in

the face when you still feel like crap and it comes back. Everything's completely normal. Like you look totally healthy, you know. But we decided that all of my symptoms aligned with this illness. And so we went ahead and decided to operate. Basically, my kidney on my left side was laying directly on an artery, all of the blood flow. Like blood flow couldn't make it through because of my kidney just laying right on top.

And so even though my MRI or my CT scan didn't show a ton of constriction, the surgeons still felt comfortable to operate. And so I ended up having what's called a kidney auto transplant, which means they took my kidney from my left side and moved it to my right. So now I have two sitting on one side. Wow. Okay. Yeah.

And the idea of that was the same as for the mall surgery. Like once that pressure is taken off of that artery, blood flow should be able to return back to normal. stomach pain, nausea should go away. And so again, I was in the hospital for a week. I did meet another Pots patient who was there getting, actually, that might have been for the other surgery. You don't meet a ton of people who have had these surgeries.

Are these, are all of these surgeries, are they a result of Pots or is it different? Like was this all, like the kidney thing, was that completely unrelated? That's a good question. POTS is an umbrella term. Okay. So pots looks different for everybody. So like for some of my friends, they would have like migraines was like their biggest symptom. But then for me it was my stomach.

Right. So because that was your stomach was the main pain, then you kind of have to dissect, well, what's causing that? Yes. Wow. And it could be multiple different things. Yes. It can multiple different things at once because at this point I had already been diagnosed with. malls, the surgery that I had had a couple years prior. So you think all these things were causing

probably the stomach pains, like the arteries being kind of like compressed and then the kidney being compressed in another artery. Yes. Okay. Okay. Got it. And at this time also, my sister had just been diagnosed, but her symptoms looked completely different. Wow. Okay. So like for her, she had, I think it's called vocal cord dysfunction where her, when she would breathe and talk. I don't know if it was like shortness of breath or just like couldn't catch. I can't remember what her symptoms were, but she didn't have like. They were completely different than yours.

Yes. She had like mild nausea, occasional headaches. They weren't very frequent. In fact, she basically ended up saying like, I'm not even chasing the pots. Like I know I have it, but I'm not like she didn't dig any deeper. into it. She ended up being totally fine. So some people they can, it's like tolerable. They don't have to kind of go down this medical history journey. Yes. Okay. Like I know a couple people who were diagnosed found the right medication pretty early on and are able to live a mostly normal life. They do warn you

about a couple of things during your diagnosis of like if you get pregnant when your hips widened to be able to like carry a baby or like push a baby through your um arteries and veins end up reroute like rerouting themselves all around your body which can make pots worse because now it has like more areas that the blood needs to go okay um but so that was always a warning they were like you just know like if you ever have kids that like you would probably be like a more high risk pregnancy and then like little things like couldn't go on roller coaster or trying to think what else. Lots of salt on your food.

For a while, I wore compression stockings. I absolutely hated them. For some people, they were great. But for me, I felt like it just squows too much of my stomach because they would come up pretty high. And so some people, that's all it takes is like change in diet, adding more salt to your food, elevating your bed. But for me, I had tried all of that.

So, yeah, with pots being an umbrella term, all of these different diagnoses follow or fall under it. Got it. So after I got the surgery, it was like I had the malls, I had the pots, I had mass cell activation disorder we found out. And that's how my cheeks would flush, just because I had all these cells that would just go crazy. And, yeah, I just ended up accumulating this, like, huge long list of, you know, diagnosis that a lot of people had never heard of. And so it was a lot of like repeating myself at the doctors and like even really well-known specialists would have no idea what I'm talking about. And honestly, I feel like my mom probably has her doctorate just by default because like

she would be able to say like, hey, I'm noticing that a lot of your symptoms line up with this. Let's go see if we can find anybody to get you tested for this. And so she, would always help me like piece together the different or the puzzle essentially of what was going on. Um, so after I had that surgery, um, same thing. I woke up from the procedure and felt no different. Um, my migraines did mostly go away, which is huge. Like I'll, at that point, I'll take whatever. but stomach pain still very prevalent and I think at that point I was pretty certain that that was just something I was going to have to deal with for the rest of my life and I already had for years and years like at that point I had that surgery when I was 18 and my first symptoms started when I was

like 12 so it had already been six years of like learning how to cope with this so yeah Yes, I ended up going, let's see, I hadn't that surgery in February, I think. No, I had that surgery in October. So that was like pretty early on into my freshman year. I actually had that surgery on the same day that I was diagnosed with Potts years before. So that day is always like a really tough one for me. But I kind of realized after my surgery that there was no way I was going to, to be able to go back to school. I wasn't loving the college in itself and not to mention

having medical issues, constantly having to go back to Salt Lake to get testing because where my school was, there wasn't really any outstanding medical facilities or what I needed at least. And so I ended up dropping out of that school and just transferring to a community college in my area. still wasn't sure exactly what I wanted to go to school for. I started going into nursing because just with everything I've been through, it made sense that nursing would be a good option for me. But then I kind of started to realize that my body couldn't keep up with, like, the demand of, like, being on my feet all day, or I have a metaphobia,

which is fear of throw up, which wouldn't probably fit well with being an nurse. So I gave up on that pretty quickly. Moved back to Salt Lake, ended up getting an apartment and just ended up focusing on my business for a while and healing from surgery, still looking into other things because I knew that that wasn't my end all answer. And eventually decided to go back to school for marketing because I was like at least I can help my business. And so at first, I think I just did it to like teach myself how to market my business. And then it became like, oh, I actually love this. And so that became my thing. And then I just basically kept going through procedures and experimentation.

And fast forward from then to now, I'm still in a very similar situation. So I still have 24-7 stomach pain, nausea. Really? Mm-hmm. I've been tested recently for Lyme disease. I am having problems with that transplanted kidney now. I get kidney infections probably once every two months. And like sometimes it even gets a point where I have to go to the hospital.

I have I got septic last I think it was last March like not this past March but a year ago so I'm just kind of having all of these like implications from the surgeries and procedures I've had before which also sucks because it's like you're dealing I'm still dealing with chronic pain and now I'm dealing with the result of procedures that we're supposed to fix it right and so I'm still trying to figure out kind of where to go from here. Yeah. So basically moving forward and what you've been doing, it's just this trial and error. Absolutely.

Of seeing if this helps. And if this doesn't help, then we try again. Right. And little things would pop up along the way. Like last February, I was diagnosed with endometriosis. And so I was like, oh, maybe my endometriosis is causing inflammation. and that's what's making my stomach hurt since literally nothing else on any scans were showing problems. So it could be like finding the right medication for something else that you don't even know you have yet, basically.

Pretty much. Okay. Medication for me was kind of like a band-aid. Like we would never know the root cause. I would just know that whatever I was taking was kind of taking the edge off. And you said like the kidney surgery that you got that helped with the mind. migraines. Yes.

So it's kind of like you're ticking away at things until you. Yeah. That's insane. Yeah. It was crazy. Like one thing would affect another or help another. But not getting that like mean root problem. Right.

Not what I wanted it to get. Yeah. Like I was fine with all of the other symptoms. Like obviously it's not ideal to constantly feel lightheaded and like you have a headache. But I'd rather have that than I feel like I was more tolerable. feel like I was going to throw up all the time. Yeah. Um, so yeah, it was just interesting, learning new things around the way. I, um, became resistant to a lot of antibiotics and I still am and, um, I've just taken so many medications. Um, looking back now that I'm 22 and seeing

what medications I was on at 13, 14, 15 is scary. I'm still kind of mixed on how to feel about it because I was diagnosed or I was given morphine when I was 13 to like take home. And like I'm really grateful that my doctor knew that I was in that much pain and literally needed something like that to live. But then you also have to deal with. like dependency on those medications. And so I ended up weaning myself off of morphine at 15 and weaning myself off of these like really strong pain medications. And I'll be honest,

like still to this day, I'm still on. It's not considered an opioid, but like some doctors, like basically has a very low opioid amount or percentage. Like, Yeah. But it's the only way that I can live day to day, like, normally. And that's what I was going to ask you, too, like, where are you now with it as far as your pain? Like, are you able to do more, or do you still have days where it's just, like, crippling and you really can't? I still, I still have those days. Okay. I would say once or twice a month, there's a day that I'm not getting out of bed, not eating, like, this past week was that.

week for me. And so we just call those flare-ups. During flare-ups, I usually get an IV, which I can do from home, which is amazing. With the port that you have. With the port. Yeah. Saves us a lot of money, not going to the ER and saves us a lot of stress. Yeah. Time too. Is that painful at all or no? No. It gets to the point where like... You're just used to it? Yeah. Honestly, I would so much rather be, like use my port then get like have to yeah have them dig around with a needle for a blood draw or IV yeah some doctors are still hesitant to use it um but yeah I access it about once a month and I was prescribed to Zofran which is like just um nausea relief which I can put in my IV so if I'm really feeling crappy I can do that um but as far as pain goes it's still

24-7. It's still every day. It's just kind of dependent on how bad it gets. Got it. So like yesterday, traveling here, I can eat something that is usually totally fine, but then that day it'll upset my stomach. And I can't even tell you how many diets I've been on, how many foods I've eliminated, like, I've just, I've tried so much that at this point, I'm like, I'm just going to eat what I want. if I feel crappy, I'll deal with it and like just live my life normally. The biggest thing that I have found has changed the way I feel is functional strength training, which kind of sucks to hear when you're that chronically ill at a young age because the last thing you want to do when you feel like you have the flu is exercise.

Like I absolutely hated when my doctor would tell me, like, you need to be. do you really need to start exercising like you need to get a recumbent bike and like put it in your basement and use it for like 20 minutes a day like that just made that just irritated you yeah like okay it's the last thing you want to do right like I'm super nauseous and you want me to go sit down there and exercise absolutely not so I didn't and there was a time at my in my life too when I was fairly making it from my front door to the bottom of my driveway like let alone go on walks, you know, swim, user recumbent bike. Like, nothing that they were asking of me sounded doable until I got to a point mentally or I was like, okay, like, I literally have to be

the change because like nothing else is working. Yeah. So medications, procedures, whatever, like only did so much. And so I just had to get to a point where I'm like, I'm going to start, like the first real exercise that I did was when I was 19 and I started going on like jogs every morning. Okay. Which is amazing that I could even jog after going through all of that. But that's where I started. And then I started like slowly doing weightlifting. And then I started realizing the more muscle that I grew around like my frame, the better the blood flow, the less blood pooling, my heart rate.

So pre-exercised, my resting heart rate was 120. And again, when I workout, could get up to 200. After I started exercising consistently, my resting heart rates about, it's between 80 and 90, which is still high, but huge difference. So I don't feel that like super crazy tachycardia that I used to, which is huge. because tachycardia can also cause like anxiety because when you feel like your heart is beating out of your chest you get anxious um so that definitely helped um i wouldn't say that exercise helps my stomach necessarily but again with the general other yeah yeah and then you said this

illness is still pretty like is it still pretty new i guess in the sense that they're still constantly getting more information and new information on it? Yeah, I think it's super unfortunate, but with COVID nowadays, they're seeing a lot of, it's called Long Callers COVID. I don't know if you've heard of like people who get COVID and then they stay having these symptoms for like months. I've had, I think I've met four people now who are diagnosed with pots post having COVID. Wow. So I don't know if there's research out there yet that proves the connection. Right.

But then it's also confusing because like with my sister being diagnosed, we don't know if it's something that you like, that's hereditary or not because POTS isn't super well known. Okay. And so people ask me questions like, oh, like, did somebody in your family have it? And I'm like, we even had my mom get tested for a couple of the things just to see. if like anything that she could have had was pass along to me. Yeah. And like my mom's totally healthy.

And my dad's Crohn's doesn't have anything to do with anything that I go through. They're just completely separate. Yeah. But yeah, it's still an unknown. But I know now there's, I think the most recent statistic I read was one out of a hundred people have pots. So at this point you're still kind of going through the trial and error. like if something else comes up, then you would try it out to see if that would help any symptoms with like your stomach or something like that.

Yeah. Definitely over the past two years I kind of got to a point where I told my doctor I was done doing scans unless he was certain that that's what I had. Again, because like once I started being more health conscious, like I started eating better and kind of being able to realize like what did agree with me most of the time. figures were and stuff like that. Right. Okay.

But at the same time, I'm, again, with, like, the radiation and, like, all of the, like, chemicals and IV contrast I've had, like, surging through my body. I was just trying to, like, eliminate, like, any possible anything, right? So, yeah, at this point, I'm still – the most recent thing I have been tested for is slime disease. And I haven't heard back on that yet. So I have like no answer for you, like as far as, like I feel bad ending on saying like, and I got no better. But. But that's just the reality of your situation. Right. And I think it's really important to talk about because there are so many people out there that have no idea that they have it yet. And like had I at 13 had somebody

like be able to say like, oh yeah, I totally get what you're going through. Like, yeah, I have those people here and there. But now that Potts is becoming more well known, people are able to like sympathize and understand better. Yeah. And also I think what you said too is so important mentioning the fact that someone doesn't have to be showing these physical symptoms to like to the outside world to be sick and to feel sick. And I think that you should never have to explain yourself.

Like even with the wheelchair situation, if somebody says that they need something, just give it. Right. Like if it's available and you have it, give it. Questioning somebody and making them feel like they have to explain themselves or it's not enough. You're not sick enough or you don't look sick enough. Exactly. I think is a really crappy feeling and something that should be spoken about more

because not everything is your typical, like, something that you can see, like you said. I'm so glad you mentioned that because that was such a huge thing for me in my teens was like, yeah. What do you want sick to look like? Like, as if there's a specific definition for it. Right. Right. Like, there are days that you can tell that I don't feel well more than others.

Like when my cheeks get super flush or my eyes are super dilated or I'm just low energy. Like I could talk your ear off all day. But if I'm quiet, like you know that something's probably right. But I like still to this day like I can feel horrible and still play it off pretty well. And people would have no idea just because it literally is invisible. And that's the thing. Like obviously over the years you kind of learn how to cope and adjust to the ways that you're feeling even if they're not great. But I feel like just because you're able to do that doesn't.

mean that it's not very real and that you're not feeling it. And I think that, and I say this all the time on this show, how important it is to be sensitive towards all different types of people, whether it's mental illness, physical illness, anything, because you really never know what someone's going through and making them feel like they're not supported. Even if you don't know them or like you're questioning them is just it's it's the worst feeling I feel like in something that people need to consider and people have been saying people say that all the time that you just don't know what someone's going through so it's always important to treat people with kindness and sincerity and sometimes I feel like the last questions in that situation are better like if somebody asks I need this

just like I said provide it rather than me like well why are you sure you need it right because I think so I think I'm sure yeah right yeah like and it takes a certain amount of courage to even be able to ask. Right. So like even when I'm not feeling well to this day and like like nausea especially just makes it like impossible to even talk. Like if I'm telling you a need that I have, it's because like I can no longer. It's gotten to a point where you can't tolerate. I know. I feel like that's a thing too that I think that when you get so used to something, you try really hard to just bottle it up and deal with it. But then yeah, if it gets to the point where you feel like you have to say something, it's probably pretty bad. Like you know it's bad if I'm like.

you know, asking for help. Right. But what you mentioned a minute ago about like talking about it, you would never have any idea, again, what people are going through mentally, physically, just like you mentioned. I cannot tell you the amount of people that I have met where when I start to open up about what I've been through, like a show I did for my jewelry a couple months ago. I met this girl. And I can't remember how the conversation came up, but I was talking about how I have like

a chronic illness. And she's like, I do too. The more we started talking about it and like opening up to each other, she has, she had pots too. Wow. And so it's like, I feel like we just need to start talking about it more because there is still a stigma around chronic illness and I'm sure there will be for a long time. But as more people start to get sick, whether that be pots and amitriosis, any sort of like, invisible in this. Yeah, or anything physical as well. Like, the more we talk about it, the more accepting, understanding, beneficial it is to everybody. I think, too, it's like one thing is you don't feel as alone. You feel like you have somebody that can truly relate and understand what it feels like.

But then also, if somebody has a similar, you know, illness as you or a similar experience, maybe they could provide insight of like, oh, well, here's things that I've tried or things that I've been diagnosed with. Like, I don't know. It's just a thought, you know, just so that it's a thought, you know, just so that it's it gives you, it kind of expands that knowledge that, you know, what other people have gone through an experience that maybe you haven't yet. Totally. And that's why it's amazing that there's so many social media platforms these days to be able to connect with those people. Oh, for sure. All it takes is a hashtag to find a ton of people that have the same thing that you do or like groups to join.

And just because like a support group wasn't right for me at the time or not something I feel like I was up to, like now I find a lot of like validity and talking to other people who have similar health issues because like you said, we can kind of share ideas back and forth. Like, oh, this worked for you. Like I had one of my best friends also has pots and she did what's called IVIG. It's basically like a bunch of little immune cells taken from a bunch of different people put in an IV bag. So it breaks down your immune system and then you build it back up. Okay.

So the idea is that like your body kind of has to figure out how to like basically regenerate itself almost. And it works really well for her. It doesn't work for me. Right. I've tried it. But like I'm glad that she told me that so at least we can like check off the boxes. Right. And I think that's important too.

And you know, while therapy is, I think therapy is so amazing and so. important. There's nothing like directly talking to people that help you feel like you're not the only one going through something in this world because I think that it's very easy to feel that way based on like you said, the looks that you might get or the questions that people might ask. So I think that's really key. And I want to ask you to, are you still making the jewelry? Is that still something that you do? Yes. I do. Oh, amazing. I love that. Did you make all the rings that you're wearing? Yes. I love it. It's so funny because when you like had your hands up before, I was going to say like I love that one like your one ring I was like that's so pretty oh thank you so

no that's amazing and I would love for you to send me the links so that I can link it in the description because I know people would love that I would love that thank you yes of course but yeah I still I still run that so um I do not really Etsy anymore okay Instagram custom orders and so I've kind of turned it into like a you create situation so like the client will pick out the stone the setting the size and then I make it and ship right to them. I love that. That's incredible. And like I said, I think it's so important too. I mean, look, as we grow up and as we age, we're constantly changing and adapting and finding new things that we enjoy and that we love. And I think that it is difficult because the things that you loved were taken away from you, you didn't really have the chance to grow out

of them or to naturally be like, okay, I used to like horse back riding in gymnastics. But not anymore. now I like this. It was kind of like, well, now I can't do this anymore. So I have to find something else or do nothing for a little while. So I think that that's a real challenge, especially at such a young age. It's like how does the young mind grasp that and accept that they can't do something anymore? So I think that it's really amazing that you found something now that works for you, that you really love and that you're passionate about.

And I think, too, even that helps people. People love to buy things and support small businesses. And I think, too, it's incredible that it's coming from somebody that has had like her own journey. You know, it's like it's not just this random jewelry that you're just getting and there's no background to it. So I think that's really important as well that that's there. Yeah. It's so rewarding. And with what you said, at such a young age, going through that, you do have to like grow up a lot faster.

Like I got me and me going through what I went through and then my siblings watching what I went through. All of us had to grow up like really fast because that was just the reality. Like being constantly in and out of the hospital, getting testing, like it was some pretty serious stuff to go through at 13 and then for my siblings to watch and my parents to watch as well. And so I think for all of us it was like kind of always living like on edge, not quite knowing what the next thing is. And it's so many different emotions. It's annoyance, it's frustration, it's like helplessness, I feel like at some points. It's like you're navigating all these different emotions.

And it's emotions that usually at that age you're not even really, I feel like, supposed to be feeling yet to that degree. But it gives you that understanding of, you know, you're growing up faster. And then I feel like reality kind of sets in at a younger age. But I think at a time it makes you feel like it's a lot. And it's overwhelming. But then I think when you get to the point that you're at now, you can look back on it and be like, as much as this sucks in some ways, it's made me who I am and has made me grow as a person and have this understanding that a lot of people might not have because it gives you the ability

to also relate to others and be a voice for so many other people. And I always say that too, coming on here and speaking about all of these people speaking about all their different journeys and experiences, whether it's mental health, physical health, even just life experiences. You become a voice not only for yourself, but for so many other people that might be going through something similar, whether it's just a mental thing or, like I said, a physical thing. And it means a lot to people because not everybody has the courage to voice what they've gone

through or how they feel because it's hard. It's not an easy thing to do. Yeah. And that's part of why I really wanted to do this. In fact, before I wrote to you, I had a... started a note thing on my phone saying in case I go on the podcast. Because I think there's a lot important to mention and like being, if I would have had that advocate, like, obviously you have your parents and you have your doctors, but at the end of the day, like, you're your own advocate.

And so I feel like building the confidence and like being able to talk about it is huge and like super important to be able to like make any progress. Yes. Because if we don't talk about it, can never move forward. And it feels isolating too. And I think having, it's just, it's crazy the way that social media and society has changed. But, you know, I always say like, imagine when you were like, I don't know, 13, if you were able to just look something up on the internet, like there's a video of someone similar to your age talking about it. I think it would make you feel like I'm not, I keep saying not so alone in it. But you know what I mean. I just like, yeah, it's just like, It makes you feel like there's other people out there that have a similar experience or that are going through this also.

Like, even though I might be the only one in my school that is dealing with this, I'm not the only one in the world type of thing. Right. And that's why, I mean, there's plenty of reasons why I wanted to write in. But like, one of them also is like there could be someone out there who is just starting to experience them. And maybe I just saved them a year worth of research. Yeah. So like any of my symptoms where it sounds like, oh, like I've been kind of dealing with something similar. Like go get, go get checked.

Right. Go reach out and at least start crossing, you know, making your list. And being able to go to these doctors too and bring up, you know, certain medical terms and being like, well, could it be this? Or can we test me for this? Because like you said, being your own advocate, especially with doctors, I think is something so important. Because yes, like they can be very trustworthy and help do wonders and help. much, but I think too, sometimes they might have a different perspective. And I think it's important, too, to come in with your own perspective and your own angles on things and your own research,

because you might as well test for it all and try for it all rather than, you know, like you said, spend years and years of maybe doing one thing and then another thing and really not knowing. Right. And just isolating yourself more and more. And also, like, I hate saying this, but unfortunately, if you go on your own medical journey, you will come across doctors that will not believe you. Like, I've had to sit in front of adults twice, like, three times my age and have them tell me, I think you're just making it up. Right. Or I think it's just anxiety. Right. It's just anxiety. Or like, maybe you have like an eating disorder because you won't, you know, you won't eat or like, I think it's worse than you're making it out to be.

or I think it's not as bad as you're making it out as a bee. And it's like you sometimes you just have to have full trust in yourself knowing like I know what I go through. Trust your body too. And you like have to advocate for it. Like even to this day, if I get, if I have something urgent going on and I don't hear back and I'm like waiting to hear next steps like you have you have to reach out. You have to get the ball rolling. Like unfortunately at the end of the. the day, like there's not going to be like a doctor that follows you through every single

step. And no one's going to fight for you and your health like you will. Yes. Yes, exactly. Everybody needs to know that. Yeah. This was so informative though. Seriously. I mean, I learned so much because like I said, it's a term that I've heard of. But even it being just like that umbrella type of thing where it's so many things that can fall under it, I didn't really know that at all. And I think it's something so important to talk about and bring up. And yeah, I loved it. I loved every second of it. You did incredible. Thank you. I appreciate it. Thank you so much for having me.