We're All Insane - I Broke Over 100 Bones

Episode Date: May 20, 2024

EVERYONE who signs up to my Bellesa giveaway will win a free toy or gift card! Enter here: https://www.bboutique.co/vibe/we'reallinsane-yt In this compelling and deeply personal video, we delve into the life of Ashley, a remarkable young woman who has defied the odds in the face of a rare and challenging condition known as Osteogenesis Imperfecta (OI). Despite her fragile bones and countless fractures, Ashley has emerged as a beacon of strength, resilience, and inspiration. Ashley's Links: https://www.instagram.com/illustratorashley?igsh=ZjlhdjNnMm9tdHls&utm_source=qr https://niko-net.neocities.org/apps?fbclid=PAZXh0bgNhZW0CMTEAAaajwHmsrO2UbtSRZtp1oZ_x0Z8oCT9aTlSMbr940bSkbnweUKl6bZZVxK4_aem_AahttUgZnEher6Q0u-areSrBWwZNoA4_-UYcCen4WuIQZ92Pcd_oUuTbnl_7NKj9Hna2yTfKE9Jl4K28CtynS5eh 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 Learn more about your ad choices. Visit megaphone.fm/adchoices

Hey guys, it's me DeVora. 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. Hey guys, welcome back to the show. Today's episode is sponsored by Balesa. As you can see, I have four amazing toys on the table right here, my personal favorite all the way at the end, which is the pebble one and only. With the warm weather coming around, I feel like there is no better time than to indulge in some self-love, some pleasure, and obviously some extra fun. And what better way is there to do that than with these toys right here? Just to run through really quickly what we have here on the table, first we have the thump, then we have the Air Vibe Pro.

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there's a link down there and you could either win a free toy or a gift card. Also, Belissa has 100% discrete shipping and billing and they ship worldwide. And now back to today's episode. Hello. Hi. My name is Ashley and I have broken over 100 bones. I was born with a condition called osteogenesis in perfecta. My specific type is type 3. So it's really severe. So I break bones quite easily. When my mom was pregnant with me, she didn't know I had a lie. That's the acronym for the disorder. She just thought I had dwarfism, which is still like somewhat like serious.

But my condition just ended up being a lot more intense. Because like your bones and everything are just more sensitive. Yeah. Okay. Yeah. So they're they're really fragile. Like when I was younger, my bones were a lot more fragile than they are now. As I've grown up, my fracture rate has decreased a lot.

Okay. But yeah, when I was a kid, I would say, like, when I was in, like, early elementary school, I would break bones, like, probably, like, once a month or every other month. It was crazy. Yeah. Yeah. And it would be, like, like, true, like, fractures. Like, I would, like, break my arm, like, all the way through the bone.

Oh, like a full split. Yeah. Like a full split. And then when you were born, did they know right away? Yeah. So when my mom was pregnant, they knew something was wrong, but they didn't know what. But then when I was born, I had a lot of fractures. So they knew right away.

And we were actually in a really fortunate situation because there was a baby who was born with the same condition like a couple years prior to me. Wow. Yeah. So they had already been seeing this girl for a while. So they were like, oh, it's OI. And is that pretty common? No, it's not actually.

So the disease itself is quite rare. So it's also on a spectrum too. So there's a lot of people who have the disorder who look pretty normal. Like they look like you're an average person. Like for me, I'm three feet like eight inches tall. So I'm quite short. And then I also use a wheelchair. But I have friends with the condition who, like, they look just like you.

You wouldn't even know. So, yeah, it's quite a spectrum. People who have the disease where they look, you know, more normal, more like an able-bodied person. They actually find out a lot later. It's called type 1.0.I. A lot of times kids, when they have this disease, their parents get accused of child abuse because the child will have all these fractures without an explanation. Got it.

Because it's not like physical. You can't really. It's not something you see as much. Yeah. Yeah. It's just it's internal, right? Right. And then your wheelchair, is that just to kind of prevent you from hurting yourself?

Well, so I can walk a little bit, but I get really tired. Like I have really bad fatigue and I'm really like unstable. Like I have bad balance. So it's more for the fatigue. But yeah, when I have broken a bone in the past, it's been hard to like gain back my energy or like my health, I guess, from the fracture. Because when I was in elementary school, I used to walker all the time. Like I had a little gate trainer that I used.

And I was actually in ballet as a kid for like many, many years. So, but yeah, it just depends on my health. It's really weird. oh, I is, it's a disorder that is like very seasonal, like I want to say. Like sometimes it's a lot more severe, but then like during other periods of my life, it's been very mild. Like when I was in high school, I think it was like I think my disease was a lot less severe. And like now that I'm like I'm in college, my disease is like it's still severe but in other ways. Like I don't fracture as much.

like I have like a lot of like stomach issues. Okay. Yeah. So it's just like constantly changing. Yeah, it's constantly changing. It's very weird. And there's like there's a lot that like we don't know about this disorder too. So like I was I was actually born in Minnesota. But my family, they ended up moving to Indianapolis because they were doing an experimental study for a treatment for this disease and they like didn't start using this treatment that I was on basically my entire life until like 10 years like before I was born I want to say so yeah I'm 20 and they're just now like like learning so many different things like about this disorder it's it's really complicated it's a it's a type one collagen disorder so like basically the collagen it's

my body is made incorrectly and collagen is everywhere. It's like the building block of your body. So mine's just, I don't know, it doesn't like form correctly. Yeah. And then the medication that you're on, has it been the same your whole life or does it change based on how you're feeling? Yeah. So I, um, when I was five months old, I got into this, this study for, they're called bispospinates. And it's basically a, it's an infusion. And it was originally given to people, I think with osteoporosis and then people who were given chemo because it strengthens you. Okay. So like after people are given chemo, sometimes they're given this bisphosphonate to strengthen them bone, their bones from the chemo treatments.

Got it. Okay. Yeah. But when I was born, they just started using this medication. for children with my disease. So it was kind of experimental, I guess. And then how often do you have to do? Is it like an everyday thing?

Yeah. So when I was a kid, I believe I did it every three months. So every like three months as a kid until I was, I want to say 11 or 12, I would go to the hospital for three days and get an IBM. infusion. Okay. And yeah, it basically improved my bone density and my, um, the turnover rate in my, in my bones. Okay. I'm not a scientist. So I'm probably not explaining this well. No, I think you're doing great job. Okay. It's making total, you're doing great. It's making sense to me. Good. Are you still doing the infusions that often or is it? No. Okay. No, I'm not. Yeah. When I was in middle school,

I believe it was middle school. I started a new medication. It was basically the same thing, but it was given through a shot. Okay. So I got a injection every six months. Okay, that's better, yeah. Yeah.

And then now I'm not on anything. Oh, good, good. So what age did you, were you able to stop with medication? I'd say, I think 20 was when I stopped. Okay. So basically they have. have you wanted to help build everything up, make it stronger. Yeah, well, so when you, like, when you're done growing, I guess your body, your body's

metabolism changes. So, like, if I continued the medication, it would make my bones too dense. Because it changes the turnover rate of your bones. Right. So, and, well, the good news for me is that generally people. with my disorder, like as they grow up, they break less. Okay, good. So, yeah.

And then is that the case, you said that's, is that the case with all different types, like with the fractures and breaking bones, or is it just like the higher that, or whatever, you said your type? So I'm type three. Three, okay. I want to say there's, oh my gosh, there's so many types. There was like four when I was born. Okay.

And now there's like, I want to say 17. There's so many different types. Now, is it, is the type? Does that mean? that it's increasingly worse or it just means different things? No, no. So it's, I believe it's based on when they discovered it. Ah, okay.

So, like, type one is, that's, like, the least severe. And I think that's just the first one that they started typing. Okay. So, yeah. But it's not all the, like, all the different types don't all have the same symptoms and things like that. Yeah, they all present differently. Got it. But I would say like the like hallmark picture is the fractures in breaking your bones.

Okay. So yeah. Because like my fracture rate is pretty high or was pretty high because yeah, by the time I was four, I had already broken 100 bones. Wow. Yeah. So I probably, I probably have broken like like 200 at this point or over that. Right. Yeah, I don't even know.

Because I think there's only what, like 200 something in the body? Yeah. Yeah. That is wild. Isn't that crazy? And then how is your healing? Like, do you heal slower? I think I heal about the same.

Okay. Probably. Yeah. When I was a kid, I healed faster from breaking bones, but that was just because I was a kid. That's with any kid. Yeah. So. It's a little bit easier.

Yeah. Yeah. It's crazy because even people who have the same disease, but their severity is, less severe, they still have a really high fracture rate too. Because I have friends that are type 1 who have broken like 60, like 60 plus bones, which I, that's crazy. Like, I know plenty of people who have never broken a bone. Right, exactly.

I haven't. Yeah. Yeah. Right. Knock on wood. Yeah. When I break a bone, I know. Right.

It's like, it's so weird. Like, it's such a specific pain. I've had all sorts of surgeries, too, because of this disorder. I think I had my first surgery when I was, like, two years old. Hey, I'm Jeremy Schwartz from American Criminal. On this season, robbery gone wrong or cold-blooded murder? Either way, Boston will never be the same. Listen to American Criminal, the murder of Carol Stewart,

wherever you get your podcasts. Or to get early ad-free access. Subscribe in Apple Podcasts, Spotify, or at Americancriminal.com. Like, when I was born, my legs were like a sea shape almost. Like they were like, like frog legs. Okay. That's like what my mom said. So I had this procedure in Omaha.

We actually flew to Omaha, Nebraska to see a specialist. And, yeah, they put two titanium rods in my tibias and beemers. Wow. Yeah, to straighten them and to like keep them strong. Right. Yeah. Because what happened was like as a baby, like I would try to stand up. And since my legs were bowed, like they would just snap.

Oh my goodness. Yeah. Yeah. Isn't that crazy? Yes. Yeah. Yeah. And then they removed those, right?

Like over time or they're still in there? Well, so mine were telescoping rods. Okay. There were basically like two rods and like one went into it. like a telescope. So at the ends of the rods, they were anchored into my bones. So the rod would grow with me. Oh, wow.

Yeah. Okay. So I did have to get mine changed a couple of times. Like I think I hit a certain point where the rod stopped growing. So I had to get new ones. And then I've had them like bend in the past and I've had to get it removed. And then is that a pretty intense surgery? Yeah.

Yeah, I think it's pretty intense. It depends. I'm going to say typically they have to break your bone to put in the rod. And that can be like pretty intense. Yeah. Just a little. Yeah. Yeah. They, I think it's called like an ostomotomy. Something. Something like that. Yeah. And they like literally like saw your bone in half to put the rod in. In the past when I've had that done. my bone like wouldn't heal which is really common like if they have to like break your bone on purpose so they actually gave me a bone stimulator which was like this oh gosh I don't even know how to explain it it's like this little electronic device that you put on your fracture and you wear it for probably like 30 minutes every day and it heals your bone with like electromagnets. Wow.

Yeah. And I didn't even feel it at all. That is wild. It's amazing the things that they can do. Yeah. It's really crazy. Like modern medicine like blows my mind. It's incredible.

Yeah. I just got an electronic wheelchair. I didn't bring it with me because I was flying. Didn't want to show it off. Yeah. Yeah. You know. But yeah, I just got this wheelchair over the summer and it's so futuristic.

Like, it's crazy. Which I'm sure makes things a lot easier. Oh, yeah. It makes things so much easier. Like, my wheelchair goes like 10 miles per hour and it has a really long battery life. I'm like, I'm under four feet and this wheelchair brings me up to like probably like five to like standing high. Isn't that insane? Yes, that's amazing.

Yeah, it's so different. So, like, my wheelchair can go in grass, like gravel. Like, it can go on anything. Right. That's good. That's important for you to have to. Yeah. Yeah, it really is.

And then hopefully I'll start driving soon too with an adapted vehicle. Okay. And then with that, is that something that you're able to do on your own? Yeah. Okay. Yeah. I learned how to drive probably two years ago. I have my license, but it's taken.

a really long time to build the car. But I should have my car in March, hopefully. Okay. Hopefully. That's exciting. Yeah. It's still incredible that you have your license and everything like that. Absolutely, yeah.

But no, I can drive this car by myself. I did drivers at training in an adaptive vehicle for probably, I want to say a month, a month or two. and I drive basically like anyone else. My car has a ramp, obviously, but I just use pedal extensions. Okay. So I just use that with my feet, and then my steering wheel is a little bit smaller. And I think that's the only difference, but yeah, I drive pretty much the same.

That's great. Yeah. That's amazing. It's so exciting. Yeah, it's nice. I'm really lucky because I've heard that, like, people, that have to use hand controls, that hand controls are harder to drive with. Did you ever find that growing up and just throughout life that you've hit any like mental

wall challenges? Yeah, definitely. I mean, I think this has been like a very like hard disease to deal with, like both like physically just because it's so painful, but also like mentally. I think like growing up I was really lucky and I had a good support system. I found a good group of friends in my life when I was younger. But even then, like even with a good support system, it was still hard to deal with like people's assumptions about me, I guess, because yeah, growing up, like people always assume that I couldn't do certain things or were just very judgmental. Like I remember when I was in high school, like,

people my age would like talk down to me and they would just be very condescending or like they would just treat me like I was stupid or didn't know anything I guess yeah and I think the thing is too I feel like common sense is everybody wants to be treated the same and equally and I think that there's a way to kind of like be more sensitive and offer help where you think it's needed right versus like making comments or saying things that are just going to make someone feel uncomfortable or different? Like, right. You know what I mean?

Yeah. Yeah, it's crazy. Like, people will say like, like, like, just the stupidest things to me. Like, I don't know. It's insane. Mentally, too, my life has just been very up and down. Like, physically. And I think that, like, plays out in my life mentally and emotionally.

Right. I have bipolar disorder too. But honestly, like, me and my mom think it's a direct result of, this disease. My mom, so my mom is a, she's a therapist actually, and she specializes in trauma. And she, she thinks because I've had so many fracture rates and I've been through so much pain that my, like, my body has produced more cortisol and more like, um, adrenaline, adrenaline responses, which affects your mental health. Right. Because like if you're always in fight or flight, that affects you mentally and physically.

Absolutely, yeah. But it seems like you carry yourself very well. Oh, thank you. Like you're such a positive person, which is good. Yeah, of course, of course. I try to be relaxed. Yes, no, I chose. Yeah, that's important.

Yeah. I think, too, like, you know, the more positive we are around things in life, no matter what it is. I think just overall the happier we can be because we only have control over ourselves and our mindsets. Right. And I feel like it's very clear that you don't have the mindset of like anything can stop you. Yeah. Yeah, I'm very determined.

I always try to be as independent as possible. Right. Like even if like something isn't accessible like with my wheelchair or what have you, like I always like figure out a way to do it. I remember when I was a kid, I got invited to an ice skating birthday party. And me and my mom were determined to go and she like, rigged out the walker that I had and like made it, made it possible for me to ice skate. Oh, that's great. So, yeah.

In the seventh grade, I actually got to compete in a science fair. And it was an international science fair. So it was a pretty big deal. But I made like a little science experiment studying Baltic Amber as a pain treatment for, people with my disease and so I'm always like I'm always doing something yeah so I'm always like really determined and ambitious I would say but yeah anyways Baltic Amber um is used for people or used for babies when they're teething it's a necklace um that babies wear I don't know have you seen that no oh really yeah it's it's really popular like um I

I've seen a lot of babies have these little necklaces that they wear. And they're super cute. Like a lot of, like, I would say, like, granola, granola moms or, like, people like that do it for their kids. So was it just supposed to help with the teeth in? Yeah, it's like, it's supposed to help with pain. Okay. But anyways, when I was in seventh grade, I wanted to see if it would work for people with my condescending. So I made a bunch of necklaces with the Baltic Amber on it, and I sent them out to different

people I knew with the disease, like all over the country and like all over the world. So yeah, I put out a post on Facebook with my mom. I did that for my, actually, I think it was my eighth grade year. And what was the result? Did it help? No, not really. Okay. Well, it was a good thought.

It was pretty smart. I said the results were inconclusive. Okay. So. Well, look, that's smart to even think of that. The sample size was too small. Okay. And I was, I think I was too young.

That's okay. For it to be super accurate. Yeah. And then how is the community? Oh, it's great. Because you said you know a lot of people. Yeah. I know a lot of people with my condition.

And I'm sure that's helpful too. It's really helpful. Yeah. Well, so when I was younger, me and my mom would travel. across the country to see different specialists. Okay. And so the main area that we did that was in Omaha, Nebraska, and we would go to an OI clinic every year,

and my mom would try to schedule it with, like, the friends that we had made. So I would go to this clinic every year and see the same friends that I have seen my whole life with this disorder so yeah that's great and then those are people that you stay in contact yeah like i'm still friends with many of them today so good yeah um we even we went to a summer camp one year that is made for people with disabilities and that was that was so fun like all my um friends with the condition came to the summer camp uh for a weekend that's amazing yeah yeah it was great so yeah that's great i think it's so important that there's yeah there's things like that that could

include everybody. Yeah, because it's, it's really like such a rare disease. Like, I don't know, I kind of feel like an alien, like to some regard. Right. Well, I think, too, we live in a world where people pass judgment very obviously and very easily, which is not great because I think it can lead to people feeling that way. Yeah, right. And I think that if people just had better communication and instead of staring, maybe they ask or they think, how does this make somebody feel? Yeah. But some people just don't have a brain. Yeah, they just like lack common sense or just like human decency, I guess. But even I was just like a random point too, like when you're talking about the ice skating

party, I think that it's important to always include people. Yeah. Even if you can't do it or you didn't want to do it or you didn't want to go at least the invites there so you don't feel like you're left out in a way. Yeah. I always tell people like you invite someone no matter what. Absolutely. I agree.

in so many situations where people just assume that I couldn't go. Right. And like they, um, they didn't invite me, uh, just because they, they thought that I couldn't go and they didn't, they didn't want to make me feel bad. Like if I was to say, oh, no, I can't do that. They didn't want to make me like uncomfortable. Right. Or make them uncomfortable.

But in reality, like, most time I won't be offended. Yeah. And the thing is, too, is like, I feel like you'd rather go like and just hang than not. I always told people on, you know, this is just for me personally, but like, nothing offends me. Right. Like, it's pretty hard to offend me. I think it's really important to know people with this disease too, just because it's so rare. Like, it's such a unique experience. Like, I was talking to my friend who has it and I was like, I feel like an alien sometimes. Like, it's just such a unique experience. And I'm always asking myself, like, why me?

but not like in a negative way, but more so like why me? Like this is like, this is so rare. Like I feel like it's not genetic, right? It's very genetic. Okay. Yeah. So I have a genetic mutation. I got genetically tested a long time ago.

And they found out that my like 17th chromosome or a small segment on my 17th chromosome is flipped upside down. That the specific type that I have, that only five other people have it. Like in the world? Yeah, that they've tested. Wow. Isn't that crazy?

That is wild. There's like a ton of different types. Okay. Right, because you said now there's like a bunch. Yeah. Yeah. So I think there's people who have the same disorder who have a different mutation. Okay.

Specifically. But yeah, I think if I were to have kids, they would probably also have the disease. So, I believe the statistics are 50% of the, or there's a 50% chance that my kids would have it. And how do you feel about that? I don't know. I don't really want kids. Yeah. You're still young.

Yeah, I don't really care. I don't really care. Yeah. But even if I wanted kids, I wouldn't want to be pregnant personally. Right. Just because that's so intense. Yeah. I know people with my condition who have kids and, you know, they had a healthy pregnancy

and everything went well, like even if their kid had OI or not. However, there were a lot of risk to their pregnancy and it was very hard on their body. Oh, I'm sure it would be so. I mean, like, especially too, like if your bones are still, like even the slightest bit sensitive. It's like, that's scary. Yeah, so actually my friend with OI, she had a kid a couple years ago, and her pregnancy went great, but afterwards she had so many fractures

because when you have a kid, all of your vitamins and minerals are just leached from your body. Right. And she told me that the biggest mistake that she made was breastfeeding, which would probably be fine if you were a normal person. But for her, it was horrible because she was taking more minerals and vitamins out of her body. And so after she gave birth, she had so many fractures. Right. Yeah.

That's intense. Yeah. It's crazy. I feel like 10 years from now we'll have such a better understanding of the disease. And they're constantly doing new research. Oh, they are. constantly. But you don't need to go to any specialists now or do you still sometimes go? I do. I do. So now I have I have a lot of like stomach issues. Like I, I think I have a gluten

allergy and that is probably related to my OI as well. And I'm planning on seeing a specialist in Tennessee, hopefully. But it's, it's really difficult to find doctors who want to treat me because I'm so fragile and my disease is so rare. I was going to say they probably just two don't know enough. Yeah, they don't know enough. And a lot of times I don't think they want to, you know, like take any risks with me either. And another thing is that there's a lot of treatment for adults with my, or not, sorry, I got that mixed up.

There's a lot of treatment for kids with my disease, but not adults. Okay. So like. Right. And it sounds like it's constantly like changing. It's constantly changing, yeah, because when I was a kid, they just started giving treatment to us. So all those kids grew up and they don't know what to do with us. Right.

And the treatment is just so much different when you're an adult. Yeah. So I'm in art school to become an illustrator. And it's honestly a really, it's really fun. Like I want to, I kind of want to get into like toy design or something. like that. That would be really cool. Last semester, I just finished a project where we had to make children's books.

And so I drew me and my service dog, Simon. Oh my gosh, I didn't even talk about Simon, my service dog. Yes, please do. Yes. Oh, my gosh. Yeah. Not sure why Simon isn't here, but it's all right. I know.

I should have brought him. No, but yeah, I drew this book about me and Simon, my service dog. Because it was so fun. I wanted to give representation, like, for people in wheelchairs. Because when I was a kid, like, there was not a character that was disabled or in a wheelchair or hardly any, right? But yeah, so I wrote this book about my service dog, Simon. who I love very much. He's not here because he had surgery recently.

What kind of dog is he? He's a black lab. You know that's what I have, right? Really? Dude, they're my favorite dog. Oh, my gosh. I love dogs so much. Oh, you'll have to show me a picture.

Oh, I will. He's the best dog. He's like, he acts like a cat. That's how she is because I have four cats. Yeah. And he's very, he's very, laid back like he never barks oh my god he's very i think i think our dogs are like oh i believe it oh i love that simon i call him i or he's just he's so laid back and he's kind of mopey so cute oh my goodness

and i think that it's so important and good that you mentioned too about um the books and the illustrations yeah yeah i feel like that's so true yeah are your basic books and everything else just the norm. You know, it's, I don't think they ever really implement people with disabilities. And I think it's so important. And I do think that's why our society does not know how to act or react to people that they see with disabilities. Because growing up, we're never really taught like, oh, this is also normal. Yeah. Which it is also normal because even though it's, you know, considered abnormal or disabled, there's enough people in the world that have a disability. Yeah. Yeah. that it should be normalized to speak about

and to be part of these books and our world that we live in. Yeah, they say like it's the largest minority. Mm-hmm. And it's so true. Like I always told people that anyone could become disabled. Like, you could become disabled tomorrow. Like that sounds so grim to say, but it's true.

It's terrifying. It's heartbreaking to it. I mean, even like with accidents, freak accidents that can happen. And then, I mean, your whole world and life is just turned upside down. Yeah. And right, it can happen at any time. It just, like, some people are born with it.

Some people. Absolutely. It happens randomly. You never know. Yeah. Like, I'm very fragile. But I always tell people, like, technically everyone is really fragile. Like.

Oh, yeah. I mean, our bodies can't handle that much. Oh, no. Like, I've, I mean, I've had people I've gone to high school with who have just died in car accidents like it can happen to anyone we're all so fragile I think we we tend to think we're invincible yeah we do and then yeah we don't realize that at any point anything can happen yeah I think I like hyper aware of it mm-hmm the thing is too is you don't have to live in fear about it but just be aware like be careful yeah right yeah yeah people always um say like

what ifs for the bad things but we also have to do like say what if for good things too like exactly like it's kind of like it reminds me of the law of attraction absolutely manifestation yeah because it's it's true like if you're gonna say what if for all of the um like negative negative things in life like you're you're missing out on all the positive things let's turn those negatives into what if all the good things happen yeah yeah yeah but Yeah, so I would say, you know, I have my disability, but I also do other things. I do other things too. Because I'm just like anyone else.

So I'm an artist. I've been doing art for a long time. Like ever since I was a kid, like I remember when I was young. younger, me and my best friend would like make, we would make things for our dolls, like our Barbie dolls out of cardboard. We'd watch videos on YouTube. We would look up tutorials on how to like, I don't know, it'd be like, how to make your Barbie doll a backpack or something like that. So I was always, I was always really creative as a kid. I would say when I was younger, like in, the fifth and sixth grade, I started to draw a lot more. My arm was constantly broken at that point in my life. I had five surgeries in one year. I know. Isn't that crazy? Yes. Yeah. It was so insane. And I

had the same operation on my arm. So the rod I had in my arm kept coming out of my bone. And they had to replace it multiple times. So during this time, I was drawing a lot and I was just doing stuff from my bed because I couldn't really do a lot. Like I wasn't very mobile. I remember I actually got a bone infection during this time too, which was really intense. I remember like scratching my cast. This is kind of gross. But I was scratching my cast and I like took my hands. I, like, took my hands. hand out and my fingers had like pus on them and like it was so gross and for context I had had surgery on my it was on my arm and my leg and my stitches had gotten infected okay and so when I went to the doctor they told me I had a bone infection and so I had to be on iB antibiotics every day

for six weeks. It was crazy. Yeah. So that was horrible, but during this time, I was drawing a lot more. And I remember my mom had actually, for Christmas,

she had gotten me lessons to do wheel throwing and to do ceramics. So I had never done that before. but it was so much fun. They adapted it for me, so I was able to, like, throw the clay all by myself. So, yeah, I did that. And once I got into high school, I got more involved in art.

And actually, during the pandemic, I focused a lot on my art. And I think everyone during the pandemic found their hobby that they did. And that was one of my hobbies. During my senior year, I took this AP 3DO class, which was, it was basically a sculpture class, like a college sculpture class. And I made a series about my disability. So when I was a kid, I had this little stuffed zebra that I would take with me to every surgery that I had. So you can like, I think you can take one thing back with you into the operating room. So I would take this stuffed zebra.

So for my art project, I decided to do a series on zebras. zebras are also the symbol for rare diseases. Never knew that. Yeah. Actually, rare disease day was yesterday. Oh, awesome. Or not yesterday, but on Leap Day. Okay.

A couple days ago, right? Mm-hmm. Okay. Because it only happens every four years. Got it. So it's like, it's rare. Yeah. But yeah, zebras are the symbol for rare diseases because doctors have a saying called

look for horses not zebras. So they want to find the most common cause for a specific ailment first over a rare cause. So a lot of rare diseases will go undiagnosed. I made this series of sculpted zebras. And I made five total. My first one was made all out of yarn. and then I had one that was a skeleton zebra, obviously,

and I had a reed zebra, which is like, I can show you pictures too. Okay, yeah, I'd love to see it. Yeah, yeah, yeah. It's like really, like, thin wood. Like, you put reed into water, and you soak it in the water for probably, like, like 10 minutes or so. And when you take the reed out, it's really soft and flexible. And you can form the reed into different shapes.

Wow. And like hold it in shape. Yeah. So I made a bunch of different zebras to show kind of like the ebbs and flows of my like own life medically. And I would say like emotionally to kind of show how like strong I am or we. week, I guess, too. It's been really hard for people to understand, like, that I'm actually sick or that I don't function. Or like what it consists of. Yeah. And I think that's why it's so important

for you to come on here because I think that it really kind of educates people of just different disabilities that are out there. And also, like I mentioned before, just to treat everybody as equally as possible and not to make anybody feel different. Right. You know what I mean? Like I said, there's such a fine line when it comes to helping somebody and asking, asking questions and then being judgmental. Yeah. So I think it's really important. And there's definitely people that have all different types of disabilities, ones that you can't even see. Yeah. So that's why I think it really helps people not feel so alone. Yeah. Yeah. No, I agree. I know plenty of people who have like chronic illnesses and disabilities that are completely invisible. Yeah. And it, you don't have to have

you know, the exact same thing as somebody else to be able to relate and understand how it feels, to feel different or to have excessive pains or to feel more fragile because that's a lot. And it's, you know, people say all the time, we don't know how lucky we are until we get sick or until something. And it could be as something as like the common cold or something of the sort where you're like, damn, like I'm really grateful for my health. And I think people need to realize how precious life is and how fragile, like you said, that we all really are because, you know, we could get sick or things could happen in the

blink of an eye. We hope that they don't, but they could. Right. Yeah. No, absolutely. I think it's so great that you wanted to come out here and come on the show and share your experiences and your story. Yeah.

Like I said, I think it's just really important for awareness for so many different reasons. And I feel like your art is so special and so important as well. And I feel like so many people would appreciate that because a lot of people speak their lives and journeys through art because it's just easier than talking about it and sometimes it you can get everything all the detail like on paper or yeah you know in these different art pieces yeah it's really important and incredible yeah I think like um it art helps people like like really understand things because you may you know listen to someone's experience but once you're able to really see it or visualize it or like feel what it is

they're going through. It gives you a different perspective. Yeah. Like it changes your whole perspective. I agree for sure. Thank you so much for traveling out here and bringing awareness and talking about everything. You did such a great job. Thank you. Of course, of course.