The Medical Detectives - Hailey's Story: Choking Hazard

Episode Date: May 14, 2025

This week on The Medical Detectives, we share Hailey’s decades-long ordeal with sudden, terrifying “stuck throat” episodes—from rural Yukon ERs and improvised home remedies, to the social anxiety of hiding her symptoms, until a late-night trip, a can of Coca-Cola, and a specialist referral finally pointed her to the right diagnosis. Along the way, we explore the highs and lows of rural medicine, the power of having a name for your condition, and how keeping it all inside can become a dangerous “new normal.” If you’ve ever felt dismissed, misunderstood, or too embarrassed to speak up, this is a must-hear reminder that finding your voice can unlock real answers. Have a medical journey to share? Email us at [e-mail]. ***The information provided on the medical detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show If you are experiencing a medical emergency, please contact emergency services immediately or consult a qualified healthcare pro***

This was a wild episode because I feel like we ended with more questions, which I don't think has ever happened before. Yeah. You know, I, as I said in the episode, I have the literal cheat sheet for our guests, what their conditions are, but it's more of like a skeleton. And so I am always still, my brain is working and thinking through things. And what's interesting in this episode is we discuss other potential diagnoses. And I just want to make clear that the purpose of this show is really to give voice to the patient's storytelling

of their medical journey, but that sometimes, you know, real life connections happen. And so you'll hear us talking about other, you know, potential avenues for her to research. But I do want our listeners to understand that this is not me giving medical advice to people, but rather me sharing my own experience with listening to a lot of people's stories and trying to help make some of those connections. I'd also say in this episode, just for anyone out there who might be triggered by this, there is some light conversation around eating disorders.

So if that's something that makes you feel uncomfortable or that you just don't want to be exposed to, this might not be the episode for you. Now before we get into the episode, there is one thing that I wanted to let you guys know. We are going to be off next week. We have some pretty exciting things happening and we'll be back in action the following week and ready to share some more medical mysteries with you. That's right and for anyone who just can't wait to get their story fix I am

making my little announcement about my book that is ready for pre-order. So thank you guys so much for your support. It is Little Miss Diagnosed with HarperCollins. It comes out on June 3rd, and I can't wait for you guys to get your hands on it. Now with that, let's get into the episode. Hi Hailey. Welcome to the Medical Detectives. Oh, thanks for having me.

I'm really excited to be here. Love the podcast. We're so excited you're here. Well, Hailey, I like to start this show off with going down a trip down memory lane and I have a daughter who's nine years old. So can you bring us back to a day in the life of Haley as a nine-year-old? Yeah, that's it.

I like this. I like going back in time because this has been an ongoing issue for decades. And so Haley at nine years old, man, life was a dream. I didn't know it then, you know, you're nine years old. There's no perspective. But I lived on a 10-acre farm with my little brother and my dad and my mom, and in sunny Okanagan in beautiful British Columbia and Canada.

And I mean, idyllic, I guess is all you can say, right? And then there was a situation in terms of the work my dad did was closing out. So we had to decide what we were going to do and as a family made the decision to move in a very, very different direction all the way up to the Yukon territory here in Canada, which is like the opposite end or top of Canada. So very cold, different climate, but also very beautiful. The town that I lived in is called Watson Lake and the biggest community from there is about eight hours away on each side. So we started making plans over a number of months as my dad's work was closing down to be able to make that move. Now living out there I imagine it's pretty isolated in terms of medical care.

Did you have any medical issues during this time? No, so I mean absolutely very very remote. Amazing doctor. There was one doctor in the town. He was also the sort of ad hoc vet. He was all of the things. But you know I don't think that my family, just knowing my mom, we probably would not have chosen to move there if anyone in our family had sort of ongoing medical conditions, just because of like access, right?

Unless it was well managed. But all this being said, two months before we actually made the move to go up to the Yukon, my mom suddenly, very suddenly and unexpectedly passed away. I mean, like I mentioned, we were a very sort of quintessential, idyllic family, growing up on a farm and chickens and cows and horses. And mom was a stay-at-home mom until we both were school age, my brother and I, at which

point she drove the school bus. We had this really kind of storybook life and then when she passed, for one, I mean my dad and her were absolutely in love and it was very sudden and unexpected. So you know just totally the world shook. Like my dad is now taking care of two little kids and we are moving in a couple months. I remember my dad is now taking care of two little kids and we are moving in a couple months. I remember my dad saying at one point you know like walking in the grocery store and just sort of being like I don't even know what these kids like for breakfast. Like I don't like he did he was very involved with us I think

he shortchanges himself a bit there but like your whole world turns upside down, right? So I was 11, we were about to move in two months and it was already all planned, the house was bought, like we were all excited and yeah. So that's a lot of change in a very, very short amount of time. Yeah. How would you characterize the way that you processed your mom's death? It's hard to say because there probably were changes that were happening due to moving to an entirely new place when you had lived in the same spot since you were a baby. So, you know, there was a smaller school, everything was different. I was definitely a little bit nerdy and, you know, it was, it was hard to fit in. So I think there was maybe a shyness that developed.

So there was probably a lot of criticism, self-criticism happening at a young age too. Just like making sure that I'm not adding any stress to my dad, whether that be consciously or subconsciously, just recognizing that like, we're all in this really awful situation. And I think, you know, you don't, you definitely don't want to bring issues up. My dad was really good at being inquisitive

and making sure that we were okay and having that open communication, but yeah. And how old were you again? Was it 11? I was 11, yeah, when she passed away. So by the time we moved, we were moving up there on my birthday, my 12th birthday. It was really hard and a lot of change. And just my mom's death and the move would have been a lot for any kid. But then, of course, on top of all of that, the first sort of medical thing happens. So yeah, it was my dad and my brother

and I were having dinner. And, you know, I mentioned a little bit about just how things changed in terms of, like, my dad caring for us, which he did an amazing job. But we kind of joked that we had a repeat of like, shake and bake chicken, and stir fry and spaghetti. Like it was kind of a repeat of the dinners that he made. But steak, it was probably a weekend night when he wasn't working and we would have been barbecuing and I'm sure it was like steak, potatoes, and something green.

And I took a bite of the steak and I just all of a sudden could not breathe. And it was an immediate sense of I can't breathe, I can all of a sudden could not breathe and it was an immediate sense of I can't breathe, I can't breathe, I can't breathe and I ran to the bathroom and I tried to drink water to see if it'll just push it down and sometimes it will, sometimes if I'm lucky but lots of times, majority of times it won't. I would say 90% of times it won't and then you just have to wait for it to shift. And it shifted in my throat when I got to the washroom. My dad, of course, is like, what is wrong and scared?

And my brother's scared, and they're standing at the doorway of the bathroom, and they're looking at me, I'm kneeling on the floor, and all the, like I'm breathing. And then I start talking, and he's like, okay, you're okay. It's gone. And I'm like, no, it's still there. It's still in there.

And he's like, okay, well, just give it give it a minute drink some water and every time I tried to drink the water it would just come right back up and I tried that for hours it was like four hours I think and finally my dad was just like no we got to take you to the hospital this is crazy what is going on and I had had allergies so I don't remember at any point us talking about like is your throat swelling up from because I wasn't also eating anything That was known to be a trigger So I don't think that there was any concern that I was having an allergic or asphyxiation Like there was nothing like that. It was literally like I choked on it and it's stuck in my throat

And it's literally blocked the point where you can't swallow, nothing will go down. Nothing at all, no. It's just like, and you try to drink the water, because I think most people, like if you get something kind of stuck there, right? And you drink the water, but it's then that feeling of asphyxiation comes back to when the water is pooling there,

until it comes right back up, and then you have to spit it back up. So you have to be really careful about how much you put down there. So we call this occluded, meaning that the occluded, meaning that the entire space is blocked. It's not just that there's something stuck. If you're telling me that you can't even swallow your own spit because it's pooling, that means you have occluded. Yeah, and that, I'm glad that you use that term because when these things happen, I get so thirsty because I can't drink any water and it won't, like even if I could take a small sip and it would go down, that would be great, but that doesn't happen.

Yeah. Yeah. And I have never heard of somebody, I have heard people, you know, you get, number one, you may think like, oh, it went down the wrong pipe, right? That's a lot of people have that feeling, but that is when food or water goes into your trachea, the lung system versus maybe you, you know, you didn't chew something quite well enough and it's too big. And so it's like painfully going down.

That's more of like impaction. Like that's a big piece that's trying to make its way down, but usually it doesn't mean that it's like, completely blocked. So if you're telling me that literally your spit is regurgitating, that means you've completely blocked the tooth. Yep, exactly.

So, okay, so you go to the hospital, you are having a spit cup, a spit tooth. Yeah. Yeah, so we go to the only doctor in town and he just thinks that I didn't chew well enough. I'm a, what, a 12 year old kid and it's like, you choked on some steak. How many times has this doctor probably heard this, seen this, especially up where we live,

everyone's eating most meat and deer and whatever. So he's like, okay, well, you know, how long has it been? Whatever. He's a great doctor, by the way. And I remember the doctor putting a little bit of marshmallow. For some reason, they have marshmallows on hand. I don't know. Maybe it's for this kind of thing, choking incidents or something to see if something's wrong with the esophagus. But he gave me like a half a marshmallow or something and told me to just keep it in my mouth to see if it would melt. And he wanted to know exactly what we were just speaking of. Was this an impaction or the occlusion, I guess, is what he was probably trying to determine. Because

if I was able to have this marshmallow goo eventually slide down my throat without coming back up, then maybe it will eventually go down the stake. So of course the marshmallow does not go down. And he's like, okay, well, we're just going to have to get that out. And what we're going to do is put a tube up your nose and it'll go down your throat and into your esophagus so I can push it down into your stomach. Whatever is in there, I can push it down into your stomach. Whatever is in there, I can push it down into your stomach.

And I'm very scared, but I'm also kind of like, oh well, I'll probably be put under. Like, I'm not going to know any of this is happening. And he's like, no, like you're going to swallow the tube while I put it up your nose. So he brings out this tube and this doctor, he's great, but he's a bush doctor. He deals with a lot of rough stuff and I swear the tube, the tubing was probably about like the size of my pinky finger when I was 12. I was like, ah, it's gonna hurt. So gets me this big cup of water with a straw and he said, as I'm putting this tube up your

nose, I want you to swallow, swallow, swallow, swallow, swallow, because it'll help the tubes swallow. And he put some whole bunch of Vaseline on the end of the tube. And my brother, his horrific recounting of this is because when I was swallowing the tube, he was standing directly across from me. So we could look eye to eye at the foot of the bed

he was standing. And I did as I was told, but of course as that tube hits wherever, I don't know, I'm not a doctor, but the spot between your nasal cavity and your throat where they connect your sinus area, it hurts, right? So I start screaming and my brother said he remembers seeing the edge of the tomb, the end of the tomb, moving down the back of my throat as my mouth is open and I'm screaming. And that's just horrific, disgusting recounting of it. And I'm like, he would have been nine.

And I just feel so bad for him. So gross. Terrifying. And just for the audience to understand, because you may be like, why would someone do this, awake or as someone who's performed a general surgery internship? The reason why we do that is because you have, starting in your nose, a tube can go one of two places.

It can go down the esophagus or down the trachea, right? We want the tube to go down the esophagus. The opening is the same. So the reason why we want you swallowing the water is because when you do that, that act of swallowing protects the trachea. So it goes down the opening, the open tube, which is the esophagus. It guides it. Correct.

It helps to guide it. So no one likes putting in an NG tube because it is uncomfortable, but you either talking or drinking water or swallowing through the process helps the tube go down in the right tube. That's awesome. See, I didn't know that this whole time either. So the doctor's placing the NG tube in hopes of dislodging the piece of meat, what happens? He, yeah, he can feel it when it starts to hit it. He pushes it down and I'm good.

I drink some water, it can go down. I feel fine, I'm happy. He pulls the tube out, that was the grossest, disgusting, most disgusting feeling. And like, I'm sure I was crying a bit and whatever, but so relieved, right? And, um, so he just jammed it with a stick down your throat? Just jammed it with a tube down my throat. Yeah. And said, you not need to learn how to chew better. Of course, right away. Because,

of course, I'm just kidding. I'm sure he was lovely. He was lovely. But I mean, 12 year old steak, I get it. You know? Yeah. I get it. Yeah. After that, it kept happening. I would say that, I mean, it must have been at least once a week, but it was really rarely as serious as that first time.

Like once a week, something would get stuck, but maybe just for like 10 minutes. And sometimes not even 10 minutes. Sometimes it's like taking a big gulp of water and then this like feeling of it being stuck in your throat but then it goes down and then I'm relieved. And then I'm like okay I'm gonna go on about my day right. And then after that first visit, after that it's kind of like well nothing's as bad as that. So it's like I feel lucky. I'm like just going about my day and I think hearing the doctor say to chew your food that was in my head. Like there was that thought process that oh maybe I just need to chew my food better. Maybe I do need to just pay attention and it's very hard to remember

but I do remember feeling like if I'm not getting it stuck so bad that I'm choking by the toilet for hours, like it's not a big deal, which is crazy. And it would happen on things like rice. Rice is a major cult. I think that was probably the next thing that I choked on actually was- Like a piece of rice? Like just- Like a mouthful of rice like starchy things are kind of a trigger so like potatoes rice noodles yeah and I definitely was

a lot more careful with certain foods and I think is when I started avoiding certain foods too like I just knew chicken is a bad one steak is a bad one and with noodles and with rice and Potatoes not so much, but with noodles and rice they're eventually gonna disintegrate and break down usually So you just have to give it time and then it'll go but I didn't have to go back to the hospital for a little while But you had never had problems eating steak or chicken or rice or noodles before? Not that I remembered. I mean how many times maybe I got something a little bit caught or something and didn't pay attention. But the thing is I had extensive allergies.

Like horrible, horrible, horrible allergies when I was a kid. They were identified when I was probably around four. And you know the whole pricking the back with all the things and I was allergic to everything. And my mom obviously was a very good custodian of making sure that I was not eating things that I was allergic to. And that's another thing too. If my mom was still alive I don't think it would have taken me the decades it did to get a diagnosis. Not to give my dad any discredit, like I'm not saying that whatsoever. I think that there would have been me being more vocal, for one. And then just my mom checking in more about it and paying more attention. She just would have had, she was the type where she would have been like, now we're gonna figure this out. And I also didn't tell my dad. I wouldn't tell my dad every time I choked.

Like I would just, if it went down, I wouldn't bother saying anything. Why would I say anything? Because I think I didn't want to be a burden. And I also just felt like this is my fault. I'm not chewing well enough. So I just have to get better at that. And in the meantime, I should just keep it to myself.

I was embarrassed about it too, right? I was going to ask if it ever made you self-conscious, like in school. So much. Oh my gosh. Like, well, first of all, I just like knew her kid there. I was geeky. And yeah, no, any attention on me, like anything to get attention away from me, you know So if I was actually having it where it was kind of stuck there for a minute

I did exactly what they say not to do and I wouldn't tell anyone I just go to the bathroom I will say I will say this because this is very important for especially every woman who was listening to this episode more women die of allergic reactions because they are Embarrassed and they they go to the bathroom by themselves. And they end up having incidents because they're alone. And so if you ever feel like something is happening, you are having swelling, you're having itchiness, you're having anything, do not go to the bathroom and excuse yourself. You need to be with someone.

Yep. That's right, everybody. All right. So you are having multiple incidents. When is the next time that you seek medical attention? I had to go to the hospital in the same town in the Yukon when I was probably 14 because it was shortly after my dad so my dad got remarried and I was 14 it was like the week of when I turned 14 that they got married and this would have been the fall or close to the

wintertime because it was like a town hall my dad was involved with the city committee and stuff and I remember it because it was like a town hall. My dad was involved with the city committee and stuff. And I remember it because it was a small town and not very many fun things happened. And they were going on this date and there was a big dinner and a gala and they were dressed up and it was all nice. So I can remember it. And I'm pretty sure it was steak then too, or chicken probably.

That's the second worst culprit. And I choked and I'm trying desperately to get it out and I'm 14, I can't drive. So they ended up having to drive me to the hospital. And I felt so bad because of this, you know, their night. But it was great because I think it was the same doctor or at least we were able to tell them what to do. Whoever was on call and it was out in no time, you know, knew what to do and it was fine. But again, like just chew your food

better. Okay, whatever. And I think it just, I don't know. Well, they didn't know how often it was happening really at the same time. Exactly. Because you weren't telling them. No, no. Gotcha. And all throughout this time, I'm starting to get the patterns, right? So I'm starting to get what triggers it and what is worse and what's going to definitely make me choke and what isn't. And it's around 14 that I decided I was vegetarian. So I went vegetarian. And I mean, we are living in a town of like 1000 to 1200 people in it and not very many options for grocery store and bless my stepmom, 14 year old decides in the middle of nowhere that she is going to be a vegetarian like that's tough, right?

And she was fully supportive and never made me feel bad about that. And I am very grateful for it. And I mean, we had a grocery store and they were great at getting things in at people's requests and stuff, but the reality is it's not always up to them because a transport truck might flip on the highway or be like tied up

for days during a winter storm so like who knows right so i'm sure it was probably difficult sometimes but it did help though it really did help like chicken and steak i can pretty much guarantee every time i'm going to get some sort of i have to be so so, so careful. And, um, and then I started recognizing that like potatoes and bready things and all of those kinds of starchy things. So I just, I think I started just making sure that especially if I was out or not at my home, then I would be making sure that I'm not, I'm just avoiding certain things so that I'm not tied up near the toilet trying to get this out for hours on end. And that went on for, I mean whatever, it went on for the rest of my life. But I figured that out. And then at 16, I moved out and back down to the Okanagan. So I moved back down to where I lived

prior to my mom dying and I was moving up there. And I moved in with one of my best friends, our family friends, and they had a space for me, a room for me, and I finished high school down in the Okanagan. And remained a vegetarian throughout high school and after the age of 16. And I think I probably only had to go to the hospital like once or maybe twice to get the

tube. But again, I'm going to a new hospital where they don't know about this and I have to tell them. I remember explaining to the ER nurse like, this is what you have to do. And they did it, which I was really grateful for. But yeah, it was, you know, having to explain and then they're like, I remember that nurse actually saying, what, like, have you got this checked? What's going on? And I'm like, well, no, I don't know. And I mean, I'm living

on my own essentially at that age. And so I certainly wasn't going to be making any sort of appointment to go to a specialist to try to figure any of this out. Did you feel kind of like a burden because of this? Oh yeah, for sure, for sure. Especially when I moved in with my friend's family there. They were great, they've known me since I was a kid. But yeah, it sucked. And then I think I moved out of their place when I was 17. So from 17, I was just living with other kids essentially. So it was tough. It was really, really tough. Like embarrassing and hard to explain and not something that I always wanted to risk explaining to people unless I had to.

But then when I had to, it was because I'd had an episode and then that's just sort of weird and embarrassing. And I didn't want to be an attention seeker, but it was embarrassing. And I was always just so nervous that it was going to happen in public. There were times where I thought that I would be able to manage it with a cup of water, like a couple gulps of water at a restaurant, and I think there's been like three times where I've had to, where it's come up, I took a little bit of water where even if it's there I can usually get to a washroom to spit it out

before it comes back up. But there's been at least three times where I couldn't. So I'd have to either put it into another cup on the table or spit it out near my bag. It's just absolutely awful. It's so disgusting to describe that. To me, it's just normal. And it is just the water coming up. There's nothing else coming up with it. But it's like that's horribly embarrassing. And so being in social

spaces you're hyper aware and then it makes you have that anxiety and I know that it's not my fault but it's like everybody in the room doesn't know and even maybe the people I'm with don't know. And I also didn't know what it was. I mean, at this point, I thought maybe it was allergies somehow, or maybe it was anxiety. But no doctor had ever been able to give me any answers. So I didn't know what to say to people when it did happen.

It was really, really awkward to like. How to navigate those conversations at a young age. And at this point, the professionals are telling you, make sure you chew your food better. Yep, every time, every time. But you, in your head, are you're like, I can chew this food fine. Like, it's not my chewing.

Yep. So you know that it's not your chewing. I know it's not my chewing. Yeah. So you know that it's not your chewing. I know it's not my chewing. For me it always comes back to the rice. Like I know rice can kind of be sticky and get into a little ball, but like come on. And I definitely think it would probably be around this time that there was commentary about it possibly being in my head. Or like it's some sort of anxiety related thing or it's some sort of stress related thing and then to look back that was certainly enough years out where I could look back and associate it with

Indirect correlation to being very very close to when my mom had passed So it's like oh well that's interesting And I was also exploring different ideas of spirituality around then and energy. And I worked in a tattoo shop. That was my job. I had a little bit more of that alternative lifestyle. I was embedded in that.

Yeah, a little bit of a woo woo. Yeah, exactly. So there was definitely around this time where I would be more open to the idea that, oh, you know what, this might just be me. It's an energy block an it's my throat chakra. I thought it was my throat chakra for years like on the bridge I'm like, oh, yeah It must just be my daughter because I was quiet and I kept quiet and I didn't speak up for myself Like no, I'm not kidding. I legit did

You know what? It makes sense because I think you know women, the first thing we hear when we have an illness is that it's something to do with our anxiety, right? And I am a naturally thin person. My mom had a condition called Marfan's, which is what she passed away from. It's a connective tissue disorder and it's like tall, lanky, thin thin people so it's always pretty tall and skinny and I think that there was an optic from the outside world well I know there was there's I've gotten comments snarky little comments along the way of life and just sort of the assumption that I don't eat enough or I maybe have an eating disorder or yeah. So there was that layer too. Well, cause you're publicly gagging all the time.

Well, that too. And I just can't even imagine as a child, you are self-managing a choking condition, right? You are doing your own trial and error, your own food trials, not under the guide of a doctor. Do you feel like to the outside people treated this as a psychiatric condition? I think at different times in my life, yes. Yeah. Yeah. Do you think people thought you had an eating disorder?

Oh yeah, definitely. I think that there has been people over the years and times over the years and if I didn't know them enough there's probably people who if they if I cross their mind at any point maybe they associate me with that or they think of yeah I can guarantee it. Just some little comments like in workplaces and like you I like like what Erin said like you're publicly gagging all the time. And you're absolutely right. So, you know, at the teenage years when you start to realize body awareness and body shame and the biases that we hold, and stereotypes and just like all of the things, all of the stuff that people think and even my own ingrained bias about certain things. Being aware of that. I'm like, okay, well, I am publicly

gagging and I'm skinny and people probably think that it's just an excuse to not have to eat or to puke or whatever. Yeah. And I must say I've never ever puked. I don't have a gag reflex. So yeah, I've never I so that was something I learned through this because there's times that I can't get it out, so I have to go to the hospital, but there's times that I can get the food out. And sometimes it'll come up a little bit, but there'll still be some stuck there. And I can't do the gag reflex to get it to come back up.

I'll have to wait for that stuff after a certain point to just go back down. It won't, it won't. If it's in a certain spot, I can use my muscles to get it out, but I cannot, nothing will activate my gang reflex, nothing. One thing I'd like to just say in here because I think because we have talked about a really

sensitive subject that is triggering for people, I think it's a good time to have just like a little PSA. That this is a great reminder that somebody's body is not the, you cannot really judge their health or what they're going through as simply as what you see. that somebody's body is not the, you cannot really judge their health or what they're going through as simply as what you see. And that's why whether it's a bigger body or a smaller body or a short body or a tall body or whatever is going on, you as an outsider

do not have the right to jump in and offer your medical purview. And I think this is a great example of something that does to someone who does not know you, who does not spend time with you, could look like an eating disorder. So I just think it's important to say it's a great example of someone that is, you know, we've talked about it a lot in bigger bodies, but I think this is a good example of someone in a smaller body, who's also faced judgment for the way their body looks and some preconceived notions based on other medical things going on. And I just think it's important to highlight that because it's not one body type that this affects and you just don't know. You just don't know.

Thank you for saying that because it was a huge component of my mental thought process. Like I was aware, I was aware. And it's stressful. And I think anybody who is experiencing any sort of medical condition, whether that be mental or physical, exactly what you just said, nobody has the right to be judging or speaking out of turn on that. It's very damaging. Yeah.

So you are living by yourself primarily, you are managing your condition, you go to the ER periodically when you can't manage it yourself. What is life now like as a young adult? Pretty much the same, except of course, we've got all of these other factors compounded on onto it that we just kind of spoke about so more responsibility and certainly there

were times in my life where it just wasn't my priority right like it just wasn't my priority to think about these things and I think I was getting to an age where I realized that if anyone was ever gonna kind of fix this, it was myself now. Like if I have to make a doctor's appointment if I really want to. But what do I even say? That I don't chew my food enough? Like I don't even know where to start. Like I didn't feel like I had a good case to go into a doctor's office and say anything about it. And when I would go to the AER, I just wanted to get in and out.

It was just to be like, yo, just put the tube up my nose. And they would do it. So it happened sporadically and then, you know, choking here and there. But also this was when I was kind of maybe more of like a spiritual wooey type thought process. I'm like, okay, I mean, it's like my energy and like, I need to deal with this.

And really that was just went on like that for, for years. And I think the other point that you bring up, which we had actually our last guest is the, the danger of things becoming the new normal. Right. And so for you, your new normal was, well, I just choke every time I have a piece of chicken. When that is not normal, that's never normal. But because you got through that first episode and nothing horrible happened, you got lulled into this sense of,

well, this is my new normal and I'm just gonna figure it out. And I think, you know, I am a little bit surprised of, well, this is my new normal and I'm just going to figure it out. And I think, you know, I'm a little bit surprised that because you were going to so many different places that someone didn't say, like, wait, you've had this done at five different ERs and really raised the alarm bells. Because I do feel like sometimes the fresh set of eyes are like, that's not normal, right? And they kind of break that pattern of like you're the new normal.

But it sounds like for you, you just kind of accepted that this was you. Yeah, it really was just my normal. That comment is, it resonates with so many of the guests on your podcast. And each time I just go, oh, I get it. I get it. I feel so bad for them when they get to that point too, because I remember how that felt where it's just like exhausted, just exhausted. So it's like, what am I going to say? They're not going to like, like they don't care. It's just like you get to this place right before apathy where you're, you're just done. You just don't, you know, it's not going to make

a difference. And really, I didn't really dawn on me until now, but the majority of the nurses who ever saw me in the ER were male nurses. And I never really correlated this, but maybe they just saw this kind of thin chick come in and they can't see what's wrong with me. They're just taking my word for it and I'm telling them what I need. And who knows? Maybe they're just like, let's just get this hypochondriac out of here. It only takes two minutes. I go along my merry way.

Maybe there's never any proof, right? You're not coughing anything up. You're not, there's no X-ray. Yeah, that's right. They never did X-rays. There was one time where a piece of chicken, part of the chicken came out while I was there in the ER. And I remember the guy going, oh, okay.

And I'm like, yeah, you just gotta put the tube down my throat, and he did it. So. I just have this mental picture of you like so laissez faire sitting on a little bench being like, okay, here's what you gotta do guys. Like directing a football team. You're gonna take the tube,

you're gonna shove it down my throat. The thing is gonna pop out and then I'm to head out. Okay, let's go. It's literally it. I just feel like if I were a doctor, I'd be like, man, she's really got this down. Even if you didn't tell them that this has happened before, nobody wants that. Nobody wants a tube down their throat. I mean, well, some people do. And I guess that's where sometimes you see all kinds. I'm sure doctors see all kinds in the ER. Like munchausen, not by proxy.

I know, I know. Like who knows? I, I was gonna say like, I don't know who wants it, whose kink is having a tube down their throat. But then, then I realized there are people who, for some reason or another want to be sick, which is a whole other world. Yeah. So who knows what the optics were. Yeah. So I think I'm probably at this point, I would have been about 27. So I'm living up north.

I've moved. I'm living in one place for the longest I've lived in a while. So I'm pretty stationary. Again though, still very, very small town and again, really good doctor. And I had an episode, went in, they did the tube, whatever. But he this time says, um, maybe you should go for a scope. I'm like, okay. And this doctor is like, yeah, I think we should send you to somebody to get a scope. We can't do it in our town. So it's only like a couple hours drive and they were asked to scope me and look for certain indicators and what the general consensus was over the years, kind of with myself, my own self, and then talking to this doctor who referred me for the scope, was that there must be some deformity in my esophagus.

This is what I was convinced about, because it always felt like it was in the same spot. And like, I'm like, there's gotta be like a deformity or something. Okay. So, I don't know how scopes work. A stricture. A stricture. Well, but I'm- A strictor. A strictor, well, yes, exactly. A strictor? A strictor. A strictor, a strictor.

A strictor. Which is like a narrowing, like a physical narrowing. Oh, okay. But they do that scope and the results come back normal. How did it feel to have a test that just is normal? Disappointing. Like so disappointing. And I think it was just like, what the fuck is wrong with me? Like what is wrong with me? Because, and to be fair, you know, I didn't know then what I know now. And I think I probably would have really grilled for the details of

that report what exactly they were looking for but again like this is the first time that I've had a scope at all so I'm not really thinking of what there could possibly be that they were looking for and I would google things once in a while but nothing was ever really coming up. I'm just like what am I gonna do here? This is just exhausting and it wasn't like there was an increase in the amount of times I was going to the hospital or that I was choking so it was just like whatever it's just the same anyway. I'll deal with it. Yeah there was no increase there was no decrease.

So whatever. New normal. How many times you go to the ER over the next couple of years? I think because I wasn't eating meat as much and I was really starting to get diligent about what I was eating. I wasn't going like for the first while, it was almost like once every year, year and a half. And then I think it was like to the point

where it was like every two to three years where I could imagine. And I remember like honestly at one point thinking like, I could probably teach myself how to do this myself. The tube and the swallowing. I was like, I could just figure out how to do this and be able to fix this myself. And I was like, no, I don't want to shove the tube up my nose. It's really gross.

You overruled your impulses. Yeah, I did. Thank goodness for that. Because that sounds like not a great idea. No. And so it was just ongoing. And I think for me, it's like because it was just the new normal but I remember key moments so like when I got married we beautiful roast chicken dinner for all our guests with roast potatoes like I didn't even eat anything

I think I had some greens but I was like there's no way I am choking today and going to the hospital. No it is not happening so like I just didn't really eat very much stuff. Not today Satan. Not today, Satan. Not today, Satan. And just those kinds of things, right? So it became more and more evident to me, particularly when I had a family. Like my little stepdaughter, she's 14 now, but I remember she was being like three and she's like, are you choking, Haley? Like, she's just like, no. She would just be like, oh, Haley's choking. You clearly got too comfortable with this, right? Yeah, it's like every night.

And really, I do. I can honestly say I choke a little bit every day. Something gets stuck in my throat every single day. And that is including now. Something will get stuck in my throat at some point during the day, every day, unless I was on a smoothie diet for something, which I'm on like a smoothie diet for something which I'm not.

So it's just, yeah. So it was those things, right? Realizing that when I'm on a road trip, I am getting like smoothies and I don't wanna choke in the car while I'm driving to the highway. Like just things like that on planes, that's a little scary too. RIP road trips next.

So sad, Such a loss. It's just like, well, it robs you of these shared experiences, you know, with, with others and your family. I mean, to not be able to have your own wedding food. Oh, and also ruining people's birthday. I've ruined people's birthdays. I shouldn't say ruin, but like I've had to leave. people's birthdays. I've ruined people's birthdays. I shouldn't say ruined, but like I've had to leave.

I've had to sit at a fancy dinner where I've had the occlusion and I can't drink any more wine and I can't eat any more food for the rest of the dinner, which is not only rude, it's embarrassing, it's a waste, it sucks, I'm sitting there, I'm hungry, and I'm just like this is horrible, but then if it shifts to a certain spot and I'm trying not to salivate and I can kind of hide the fact that I have to like let my spit go somewhere, I can sit there for some time until it's like, okay, then we can leave. But there's some times where it's too early off,

like early enough in the festivities where it's like, I can't. So I just have to leave. Or if we're at a home or something, it's a little easier because I can just be like, explain, and then I can go into the bathroom and try to like, just wait to get it out. But the longest was at a friend's wedding weekend, and we were all in really fancy RVs,

and it was really nice, but I was in there for four hours until it finally went, like hiding in our bathroom for four hours. Like that sucks. And people are worried about you, and they're like, how does anything, there's nothing anybody can do. Absolutely nothing. So it's just like, damn it, it just ruins everything. Ruins everything.

Do you ever think about all that time you missed dealing with this? Yeah. Yeah. And I also think about, again, people's perceptions of me and if it ever changed dynamics or relationships or even work relationships or whatever. Like- And they just didn't tell you. And I just didn't know. Yeah.

Or going back to sort of just the optics. I remember there was a coworker and then I remember it was the kind of like a Christmasy dinner thing. And I didn't have very much stuff because those are all pretty much things that are gonna make me choke. I just didn't have much on my plate, right?

And they made a comment like, oh, you know, out of everybody, you're probably the person who should be eating more than that. It was one of those pivotal moments too, where I was like, do I explain or do I just not? And I went with just not. And I didn't have a diagnosis then.

Now I'd be like, well, let's sit down and I'm just going to give you a story about like, you know what I mean? No, but that's one of the hardest parts about being misdiagnosed and undiagnosed is because you have no receipts. Knowledge is power. You have nothing. I say this all the time. Diagnosis is power. Absolutely. So, Haley, what happens when you reach your breaking point with this condition? It was just over two years ago. So, I was making chicken soup and I was starting that chicken soup in the morning and I ate a piece of chicken and it got stuck. And I was working from home that day and I was like this

thing's gonna go down eventually and I'm thinking it probably happened around like eight or nine in the morning and I'm spinning all day and I'm like in denial right like it's no like and it gets to a point where I'm trying to get this out of my throat. So there's like this sort of technique that you use where you're like, like try to use your throat muscles like this to try to get it back up because it's pretty evident it's not going down. And you get to a point.

Just for those of you who can't see, this is terrifying. Like if I saw somebody doing this, it's like. Like a half choke. Like it looks like you're both choking and trying to vomit at the same time. It's called using your plettisma. Yes, thank you. I've read the word and couldn't say it. And it is, it's like vomiting and choking at the same time.

So you can act. Did you try to do that and it felt awful? Oh, it's like, it is, no it is, it's terrible. It's so counterintuitive. Like it's just lodged there. So after about four hours that usually it's pretty sore if I've been actively trying to get it out. And then there'll also be moments where eventually

when it's going on that long, your body is also trying to get rid of it. So it's involuntary where it's like, eh. But I had to come to my Jesus moment at like eight o'clock at night like I was like this is 12 hours I haven't been able to drink any water and spending half all day I have to admit defeat like I just have to so I go to the hospital and this is the first time that I'm going to the ER in my community where I currently live

for this and I go and I'm like This has been happening all day like 12 hours. I'm really really thirsty. I'm exhausted You just have to put the tube up my nose and down my throat And I also went really late to like I kept on putting it off But I admitted to feed a while before that, but I thinking it's not gonna be as busy. So I'm like, sweet. And they got me in pretty-

Because you're an ER pro at this time. Yes, oh, absolutely, 100%. And they did take me in pretty quick because I can't swallow, right? So they put me in a room pretty quickly. But when I tried to talk to them about doing the whole tube thing, they're like, we don't do that anymore and I'm like anymore? You know what I'm

talking about? Like yeah people do get like impaction we have done that before like it used to be a thing but they're like we don't do that anymore that's not a thing and I'm like well what are you gonna do? They're like well we have cans of Coca-Cola and it can't be diet Coke it It has to be real Coke, like normal old regular Coke. She's like, I'm gonna give you this can of Coke. You're gonna take little sips, let it sit over top of the chicken, spit up in your blue little cup bag

that they always give you as you go. But try to let it sit there because the Coca-Cola will break up the proteins and it may be eventually it will start to, you can start coughing some of it up as it breaks up or it'll go down. And I'm like, okay, whatever. But I'm like, also, can I get my V? Cause I'm like super dehydrated and they did. You had to have water all day. Yeah. I couldn't bring any water, nothing.

So they did. And I'm like, this is so stupid. This isn't going to work. And this nurse is so nice and she said, either way we're gonna put in a referral for you to go see the endogastronologist in the morning, the specialist, we're gonna make an appointment, like we're gonna set that up right now so that you've got a slot for first thing in the morning in case it doesn't come out,

but either way you need to go see him if it does come out. Like whatever. And it started like chunking up after about, I would say three or four hours. I was there until six in the morning. And at six in the morning it came out. It had been broken down enough, I guess by this Coca-Cola. And I'm like, holy, but this is going on like 24 hours that I've been awake and just dealing

with this, whatever. And so- So the Coca-Cola ate through the chicken? Is that what you're telling me? That's essential. I'm not a scientist or a doctor, but this is what the nurse told me. I was just so happy though. And I felt conflicted about whether

or not I was happy that it came out and I could go home and go to sleep or if I was annoyed that I had gone that full amount of time with it lodged in there and I wasn't now immediately going to see the specialist because it was like, oh maybe something. But I also was like, the specialist ain't gonna do anything, like nobody knows anything. It, I've never had an answer yet. So what? I didn't really care, but. But you went, which is some people just don't even go. Well, I wasn't, I wasn't going to go.

They gave me the information and they actually said they'll follow up. But I wasn't going out of my way to do anything about it. It's my family doc, my general practitioner, who I was able to receive as my general practitioner at Connivaut of a multitude of other various health things that I had going on. And she calls me the next day and she said, what the hell is going on?

She's like, you've mentioned this to me before. You've never made it sound like a really big deal or anything, but this is crazy. You were in the ER, what the hell happened? And I'm like, oh, let's explain everything. She's like, you are going to see this specialist. And I'm like, oh, okay. Like, it's not that big of a deal,

but I guess it is a big deal. And she started grilling me like, Haley, like you kind of mentioned this about allergies, but like never like, what? So Sal goes back to communication. The theme of this episode is communication. So she Yeah, she grilled me and she gets me into the specialist right away. I think they actually ended up they had

already had the referral because I had been at the hospital. So I go for a scope and I meet the endo... Am I saying that right? Gastroenterologist. Yeah. Gastroenterologist. Gastroenterologist. I don't know. I always stumble on it. He is amazing and the staff are amazing. It's just a small sort of specialist practice and he explains a little bit to me like what he might be looking for before he does the scope. He explains, I'm going to go in, I'm going to take a biopsy, I'm going to be looking

for these certain things, strictures being one of them. This could be something that is related to your history of allergies. It could also be something else. And I may put a balloon down, depending on what I see, I may put a balloon down your esophagus and try to dilate it a little bit if it's narrow or because of these strictures. Like, OK, whatever. So I wake up and I'm kind of out of it.

But there was this word written at the top of this paper while I was waiting for my ride and the surgeon specialist my amazing doctor he's like in and out right he's got a million patients so I didn't see him but I asked the nurse like what is this written at the top of this paper and she's like esophage...genel esophagitis. I can never say it properly, but EOE. And she's like, that is what Dr. Monkowitz thinks you have, but you had a biopsy. So we don't know. Let's just get some of the more of the results. And honestly, I'm the nurse and not the doctor. So he wrote it on there though. So that is what he suspects you have. And I was just like, really? Like he

actually thinks like, what? I've never seen this word in my life. And she's like, oh, well, I mean he wrote on the report there that you have these strictures and there's this and this and this. And, and so the office will be in touch and yeah. And so I went home, of course I'm Googling everything and I'm just like, oh my gosh. And it was amazing. Like it's so amazing to know that there is, there is a name for it and there are ways to treat it.

They were able to give you a diagnosis immediately after the scope? No, he was going to send the biopsy away, but he wrote on the paperwork that he thought that's what it was. Okay, presumed diagnosis. Yes. So I had this word that he had handwritten on the top of my paper and the nurse said, we think this may be what it is, but we're going to send the biopsy away. Also while he was in there, dilated your esophagus by two millimeters with a balloon.

I don't remember the exact measurements that first time, but for instance the last time I went in about four months ago for dilation, he took my esophagus from 12 millimeters to 14 millimeters. And as far as I know, a fairly normal size and diameter for an esophagus is around like 28 to 30 millimeters. Oh my gosh! like 28 to 30 millimeters. Oh my gosh. I think it probably varies for people, but the reality with the narrowing in mind is that there are strictures. And so they identified that there were strictures,

sent the thing away from the biopsy away. And then they concluded that yes, I have EOE. And I felt so validated and I felt so happy. The fact that there's a specialist who deals with this now in the city that I'm in and that I have access to that, and I just feel so relieved. It just is, I don't know, it has made me so happy to be able to explain to other people.

And when I was able to tell my dad and my brother, and they were so happy to know that there was something, like, because it's confusing for them too. And it was also terrific for everybody around me. Like, it really is. So yeah, I was really, really validated. In this instance, it's probably helpful for me to step in and give a little background as to what EOE is and this segment I like to call Dr. Nance's Med School 101. Yes, please, because I'll put it there.

Please, because I'm confused. We love those. So I think the best way, and I've used this analogy before because we've had quite a few immune related conditions. Yes. I like to use the analogy of the immune system being like the police and you have different members of the police and you have say like your neutrophils they're like the beat cops and they're just walking around making sure there's no bacteria hanging out and taking care of them. Then you've got the T cells and they're like special forces

and they're going in against specific bacteria. Then you've got the B cells, they're more like the investigators and they have like memory and they'll send in antibodies. And then you have the eosinophils and they are like the hazmat team. They are the ones who deal with parasites. Now, as part of their job as the hazmat team,

they are just like spraying chemicals all over the place, right, to get rid of these nasty parasites. Bleach. But in your case case you never had any parasites to begin with. And they are doing all of this spraying on your normal tissues and your normal cells. So in your case your food allergens were acting as a trigger for those eosinophils to release all of these chemicals, which caused years and years of inflammatory buildup along the lining of that esophagus. And don't quote me because I am not a gastroenterologist, but what I am imagining is your esophagus is

not narrow because the esophagus itself is thin. It's because the walls became thicker. Scarring. Correct. And the opening became more narrow because of the years of inflammation. And probably every time you had a new allergen, it just set it. You probably have a local allergic reaction that probably also caused narrowing, you know, like at the same time.

Totally makes sense. Also, can we please forever call it Aaron's Med School 101? Yes. I love it. I love it. I love it. I love it too because I'm visual and the way that you explain things in the way like cells and all like you use the analogy of things like the police officers, the hazmat or whatever, it just helps me so much every time. Well because as patients you get a diagnosis and you're like well what does that mean? And we don't as doctors do a great job one were restricted in our time

But also just to be able to put it in words that Makes sense and that and everyone has every doctor has a different way of describing things But I think using these analogies are just really helpful in understanding because you did not go through Biology 101 and so it takes time to describe a little bit of the background. But then if you have a little more knowledge, you're like, oh, then that does make sense. And now instead of just being told, well, don't eat chicken, double vote. Now you understand like, okay, each time I have chicken, I'm setting off my own false alarm. Yep. Yes, exactly. Exactly. It was, I mean, like we said, diagnosis is power.

And when I went home, you know I'm reading everything after I see that word, right? And it was just, it was like the best, but it was also really sad. It's only been sort of recognized and started to be researched since the 90s. It's quite new. So the sort of general consensus was that it was a rare disease, but now the thought process is that it's actually maybe not that rare. It's just that there's been a lack of information. But you know, all

through my life when the doctors would say to me, you should chew your food better, you're eventually going to tear your esophagus. They would always say that too, over the years, you're eventually going to tear your esophagus. And I finally did. So I had another episode, admitted defeat, went into the ER and it was Easter weekend. Remember it was Easter weekend when it happened because I felt so awful that they had to call in the surgeon. And when she came in, she was called in sometime in the morning. I'd been there overnight and I thought that they were just going to go in and take the, again, it was chicken, take the chicken out of. You're never going to learn.

I love chicken fingers too. Like, seriously, I'm a child. I just love chicken nuggets. But it's like I can go back to being a vegetarian. But like I love chicken. I actually like vegan chicken nuggets too. But anyway, so they put me out to go in there to remove this thing. And then when I wake up, I remember looking at the clock and it was like quite some time after and I'm like, what's going on? And they're like, oh, you actually had a significant tear in your esophagus. So they had to go in and put a stent in. So now you have this stent holding your esophagus together. Don't eat anything other than soup starting tomorrow.

So yeah, I had the stent in my throat. But yeah, so then now I just go every, I don't know, four months and get a dilation, but it doesn't ever seem to stay. So the nurses there last time I was in for the balloon, they commented about how I'm the youngest person that they see on a routine basis. They're like, we usually don't see younger people this often. And, um, it doesn't seem to stick. Yeah.

Yeah. Great. But it's like, I can tell the one doesn't seem to stick. Yeah, yeah, great. But it's like, I can tell the one things are starting to get stuck again. So I call and I go in, but it's like, it always shrinks back down or like it doesn't, the dilation doesn't help. It's because they're, they're not offering anything to actually get to the root problem, which is the overactive eosinophils. Yes, exactly. And I do have a medication, Pantoprazole.

Pantoprazole, I think. Pantoprazole. Yeah, but it's more for cancer. But that does not correct. That just decreases. And to be honest, that has nothing to do with your situation because that is for acid reflux. That is to try and prevent.

Yeah, so I don't have acid reflux. That is to try and prevent... Yeah, so I don't have acid reflux. Correct. Correct. So your problem is you have an abnormal infiltration of eosinophils into the lining of the esophagus. Yeah. So the things that I've seen as options to eliminate what could be major triggers or what could be making this worse. It seems like a big journey and I don't know if it's one that I'm like willing to

just take on my own, you know? It's a lot. It's a lot of work. It's a lot of diligence. Yeah, I mean the the concern, right, is that your esophagus gets to a point where this is getting pretty technical, but when the normal tissue for the esophagus, it's interesting because it's technically smooth muscle. So again, getting into more of like a biology, the muscles that we like make a bicep with, right? This is skeletal muscle. It's called striated skeletal muscle.

The smooth muscle is the involuntary, the muscles that you don't think about, the esophagus going down, your stomach churning, your intestines, right? It's made of a different type of cell, smooth muscle tissue. When that becomes inflamed, that then scars, and then it cannot perform its normal function of peristalsis, which is what it's made to do. And if that no longer becomes functional, then you're not going to be able to safely swallow your food. And that's where I'm assuming probably the discussion or the preparations have been talking

about potential need for feeding tubes. To be honest, I really thought where this was going was when you very first started and said your mom had Marfan syndrome, that you also have a connective tissue disorder and that because of your connective tissue disorder, that tough tissue does not coordinate the peristalsis. Well, you know what? maybe it's connected. I get checked from our friends. I get my heart checked, but I do have a slight mitral valve prolapse

that they keep an eye on from her. Yes, yes, because your tissues are just too stretchy. So I thought you were going to have, I thought, you know, and guys, I'm cheating because I know what the end diagnosis is. Yes. But I thought that there would be other things involved. I thought that you would have more to just the histologic diagnosis of eosinophilic esophagitis. Well, Erin, it's only been two years since I got this diagnosis and you know, like I had laser eye surgery and my so like connective tissue,

like I had bad eyes since I was in grade three and that's part of Marfan. So like all of these things, right? And I only got my diagnosis a couple years ago, but this what you just mentioned, like we haven't found the root cause and I would like to get to the cause of this, like to the root cause, but I need to start being vocal about the fact that that connection needs to maybe be ruled out or made because it is. I've obviously done all sorts of research on Marfan's and I knew it was a connective tissue disorder, but I didn't associate it with my esophagus. Yes.

And also I think because, you know, and again, I am not a gastroenterologist, so I don't have history with EOE, but to my knowledge, I have not heard someone having well over a hundred plus episodes of occlusion. Okay, I just like with something. Cause that's what I like to do, but EOE10 is enriched,

which I'm assuming means happens more frequently, in patients with hypermobility-associated connective tissue disorders. Wow. Holy smoke, Erin. Including Lowey-Diet syndrome, commonly known as Marfam syndrome type 2. What? And hypermobility variant of Ehlers-Danlos syndrome. Holy smooth. I think you need to look into that. That's all I'm going to say. Yep. It's also time for me to go for my

heart checkup too. So this is in a paper called genetics of esophilic esophagitis. This is like light bulb and I am so grateful. This is so interesting. Yeah I mean just from seeing you on this podcast Haley in your little box on my screen I could I could tell that you have either some type of Marfan or connective tissue disorder from looking at your hands And again, I am a hand surgeon So I'm particularly keen on on focusing on that But to me it doesn't necessarily mean like, you know, this is the reason and this is the cause. But I do find that people who have a lot of like unexplained weird things that they can't put their finger on and they don't know it very commonly ends up going back to that.

So interesting. I've never had a doctor like I I've had doctors say to me, like my arm span is two inches longer than my body length. There's like all these like, they've checked all the things, but I've never had a doctor like for you to, and I know, I know what I see when I look at my hands too. Like I know that's symptomatic of morphoid, morphinide indicators, and you are a hand surgeon, so I guess I'm just trying. But like no one has ever said that to me and to me it's obvious

Mm-hmm. Mm-hmm. So yeah, I think for a lot of people they know deep down that there is something Different not wrong, but there is something different and for you you suppressed probably that gut instinct for so long because you were dealing with way more than what a normal 12-year-old would be dealing with. And so I think it's a story of survival. You did what you needed to do to survive. And you made it. You made it. Yeah, thank you. Thank you. I do. I mean, I just feel so happy now to know sort of what is going on in at least the beginning stages, right? Like, I mean, it was decades that

this was happening. It's only been two years since I've understood what it was. It's so nice to know what makes it better, what can help. And now I've got this new connection to it. And I look at it as just an opportunity and more knowledge. And I'm just like, I didn't expect this gem of info to come from this conversation. I thought it was just gonna be like, okay, well, like, this is it, but it's just absolutely, I think I'm gonna be processing this for a minute.

Like I think I'm actually kind of in a little bit of shock and being able to advocate for yourself. But then using that, I've had to use my mom's illness as an advocate tool as well over the years. And to be able to combine them both, like now I'm just like, okay, no, we got to figure this out. You know, I guess it leaves a little bit of a mystery now at the end. Like I don't have a definitive. It is an ongoing journey. There's stages to every journey too, right? Yeah. And you learn more and more about yourself as you go

and hopefully have people as part of your community, which that's exactly what you guys are creating. Like it's amazing to, we wouldn't have had this conversation. I wouldn't have made this connection or it wouldn't have been made before me. It's just, it's so important to have people who don't make you feel like you're too much, like you're stupid or like you're overreacting. So I just really appreciate that space and community you're creating here.

Thank you so much for joining us. This was an incredible conversation and I hope this is a jumping off point for you to even more discoveries and recovery. Thank you so much. Thank you so much. And keep doing the work you do. I just every week, I'm so excited to hear about somebody else's journey. So appreciate what you do. Well, this only exists because of people like you.

So thank you for supporting us. And I think we've been more for sharing your story because I am sure it's going to help people. I hope so. I really love the perspective of this story this week because it's coming from someone who is experiencing medicine in a rural setting. And we have to remember that this is a real situation where you may only have access to one doctor, you know, who you are relying for so many different types of possible medical conditions. And, you know, I really, I loved how she was so appreciative and, and understood the

barriers that could, you that could happen with just having one person be responsible for knowing everything about you. And I really thought it was a great episode to see rural medicine in action. Totally. And I think one thing we did also learn about when you are in a rural community is that the better you can be in communicating what you're feeling, what you're dealing with, the better chance you are going to have at getting a diagnosis.

I mean, that's true for anywhere, but especially in rural medicine, because it at least gives them an avenue to research, because they are covering so many different forms of medicine. I mean, she mentioned that this man was also the town vet. Like, he was doing people and animals. So it gives you a perspective on just how rural this was,

which was fascinating, by the way. Imagine going to like a doctor with your dog and you both come back with results. One stop shop. One stop shop for sure. I would say another thing that was fascinating to me through all of this is how comfortable she really became with just dealing with it.

And I think a lot of that has to do with the fact that when you lose a parent when you're young, and I lost my mom young, not that young, but younger, that's heavy. And there's a lot of trauma that comes out of that, often unintentionally. And sometimes you just don't want to be another problem that people have to deal with. So you just get used to it. Yeah., she spoke multiple times about how she didn't want to add another thing, right, to her dad's plate. And we talked about the new normal and how she felt like she could handle it.

And this was just another part of her life. And you know, to be fair to all the different doctors that she had seen, she had done a very good job of hiding, I think, how serious the condition was, probably as a defense mechanism was downplaying her symptoms. Yeah. I think she eventually realized that, right? I think one of the hardest things about chronic illness is you do begin to feel like a burden if you constantly express every time you feel off, every time something goes wrong, because it is chronic.

It is all the time. It is going to happen frequently. And so I think it was the first time in one of these episodes where we really talked about someone who internalized that enough to hide that away. And I think it's hopefully somebody listening to this who might be doing the same thing will realize that in the long run, it actually creates more issues

because you never get a resolution or at least a hope of a prognosis if you don't share the information about what you're feeling. And I hope if people can take one thing away from this episode is if you are having a medical emergency, do not isolate yourself. Do not slip into the bathroom and hope to go unnoticed.

That is a dangerous situation. Yes. Agreed. And I would say that if you are someone that suffers from chronic issues, find someone in your life who can be the non-judgmental nurse star. We often talk about this in the terms of doctors, but the people in your life are just as important.

And finding that person that you feel comfortable confiding in when you don't feel good is not only empowering, but also could save your life. Well, we'll see you in two weeks until then. Remember, we're taking a break next week. So you're gonna just have to like, maybe just re-listen to an old episode, you know? Why not?

Re-listen to your favorite ones, send it to your friend. And if you have a story that you think should be on the podcast, don't forget to send us an email. I'm gonna ask Erin what the email is cause I always forget it. And if you're like me and always forget it, it is linked. So don't worry, but she's going to tell you what it is. It's stories at the medicaldetectivespodcast.com.

Someday I'll remember that. But for those of you who are like me and can't remember, it's always linked. It's always linked in the description. Bye. Bye, everyone. Bye! Bye everyone!