The Medical Detectives - Leah's Story: The Vampire Diagnosis

Episode Date: April 2, 2025

Leah grew up never seeing a real doctor, but learning from her homeopath mom how to listen to her body. As an adult, she was told she was allergic to the sun, iron, and bread. But when she landed in the ER on her 40th birthday, vomiting, in unbearable pain, and with purple urine, doctors were perplexed. Every test was coming back negative, and all of a sudden she felt like she was in an episode of House. Finally, an orthopedic surgeon remembered an obscure disease from medical school...This is a medical mystery for the books, with misdiagnoses, near-death moments, and a diagnosis so rare it made Leah a teaching case. Part comedy, part chaos, and all too real for anyone who’s ever had to fight to be believed.Have a medical mystery or story of your own? Send it to [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***

Before we get into what is indisputably one of the wildest episodes we've had, which I feel like we keep saying, but like they just keep getting wilder. I want to take a little moment to say thank you guys for supporting us so much. It's been really great to feel the community so involved and to also ask you guys for help so we can continue to create content like this. Yeah, we would appreciate any reviews or telling your friends, put it on your Instagram stories. We love reading all the comments from you guys. And so the more we know what you love about the podcast will help us make better podcasts. Exactly.

And the more that people know about the podcast, the more opportunities to tell stories we'll have. So we're really just hoping to build a community and really drive awareness for what women face in trying to get medical treatment. Speaking of which, this episode has what I would like to refer to as a literal icon when it comes to advocating for care. Yes, I think we're gonna start our own Medical Detectives Awards ceremonies.

Maybe we'll hand out little, I don't know, little pills. I don't know. Well, I think what- Little stethoscopes or something. Well, I think what you'll find out is that if she were to get an award, it would be a little fishy. And that's all we'll say. So with that, let's get into it. Hi, Leah.

Thank you so much for joining us today. Hi, Leah. Thanks for having me. This is exciting. I am super excited. Wednesday is my favorite day of the week now because I am a researcher. So every time after the episode, I get to go Google a bunch of stuff and it's like my favorite. Oh, so good luck to you. You will be Googling for quite a while. Oh no. It's a good one. Yeah. I don't want to give things away, but I will say that I am on vacation and I had to do the most prep work ever for this episode. So congratulations, Leah.

Thank you. Thank you. Yes. Yeah. Yeah. But I want to get started by asking you, what was the first thing that you noticed was wrong with your body? Okay. So growing up, I definitely had a more unique childhood, very different than the rest of my friends. So I was raised, I've always been a vegetarian.

Still to this day, I've never had meat. My mom was a homeopath vegan. She was a Buddhist. So I was raised kind of just like really listening to my body. We don't, she like for, oh my, I'm sorry. My mom passed away. So it's okay that I'm saying this.

Cause she forged my documents. Cause it was the eighties. They didn't really care that much. And we were right like, so you have to have like your vaccines and stuff for elementary school. And she was like, no, you're not doing that. I would make up this doctor and she would write his name was Joel Potash. And that was my doctor growing up.

So I know that's bananas. So I never went to a doctor, but I was never really sick. So I never really had a need to go to a doctor. I never had any broken bones and I didn't even have the chicken pox, never had a flu, never had the strep throat. And then when I turned 18, I wanted to go to college and I needed to get an MMR and she was like, well, you're not going to college. And I was like, well, you're not going to college

And I was like, well, you know, that's not real life and I'm 18. So her mom she had Parkinson's so she snuck me into her doctor and Her doctor was like so you've never been to doctor and I was like no and She was like, okay, so you need like 17,000 shots. And I was like, what's tetanus? So that's kind of my background is where I also didn't have any buddy that had any medical degree looking at me ever. I'm trying to process.

It was your mom invented your doctor. Right. I love the name Joel Potash. I love the name, Joel Potash. I love that your act of rebellion was getting a vaccine. It was like a moment. My grandmother and I are like sneaking in. I remember thinking like, oh my God, what if my mom finds out?

Do I get grounded? Can I still get grounded at 18? So as I got older, I'm a very lucky person. I have grown up with 10 amazing women and we have been together since we were in kindergarten. So we all know each other very, very well, like inside and out. And luckily we all started college together.

So we went from elementary to junior high to high school to college. And we all lived together in the same big house And I started to notice as we got older, you know, we start going out more we start partying a little bit and I had had obviously like, you know prom night We snuck some drinks and we would do some things and I always felt Massively hung over where I noticed my friends did not feel quite as bad so I wasn't sure like I should I

drink more than them or you know it was very apparent that alcohol had a much bigger impact on my health the next day than anyone else's and then when we got to college parties became a bigger thing and I could be hung over for a week where my friends are like going to the gym and they're running around the block and I'm like I can't hang. So like I'm a lightweight, I don't know and I did occasionally smoke cigarettes and only a few of us did that so I thought maybe because I would only smoke cigarettes and only a few of us did that. So I thought maybe, cause I would only smoke when I drank,

so I thought maybe the combination of both of them is just clearly making me feel worse. And I know that both of those are not great for your body. I've been a homeopath. I was raised a strict vegetarian. We didn't eat fast food. So I was aware of what I was putting into my body wasn't great, so I didn't expect to feel amazing.

But there was a clear divide of how I felt and then how everyone else felt the next day. So that's the first time where I knew something was wrong because I was like, why don't you guys feel the same way I do? And then I was just kind of like, why don't you guys feel the same way I do? And then I was just kind of like, okay, well, that's just how it is with me. So that was my biggest big thing where it was just bizarre. Like I just couldn't figure out why I couldn't drink.

I just couldn't hang with anybody. I mean, I still tried. Don't worry, I gave it a good college try, pun intended. But I knew that my body maybe wasn't as healthy as I thought. And I also didn't have the memory that my friends have. So they would say, hey, do you remember this? And I'm like, yeah. And I would give a fact about a statement and they're like, no, that's not how that

happened. And I was like, well, that's weird. But my mom was kind of, I just called it ditzy. So I was like, okay, well, maybe I just don't have a good memory. And my dad would be like, yeah, you and your mom have a bad memory and a bad sense of direction. So I sort of didn't necessarily think there was anything wrong. I just thought I was one of those really bad drivers

and a person with a bad memory that can't hang at parties. Did the memory thing affect when you were going to school? Did you have issues with memory in that sense or how would you describe it? So no, not so much at the moment, but looking back in high school, oh my God, this is a really good way to introduce myself. So the other, we were talking about like, I'm waiting for faded breath.

Oh my gosh. Like, are we talking to someone and I'm like, yeah, it's six inches and four centimeters. Someone's like, that's not right. And I'm like, what do you mean? And I was like, no, that's how inches work. And then I try to remember learning a rule or a math. And I was like, am I learned? And I was like, I don't actually remember learning this.

Actually, I don't really remember math class. So when I look back at high school and stuff, I can't quite remember specific details or my imagination is kind of filled in blanks where I'm missing memories, which is bizarre. So I'm from Syracuse, New York. I don't know if anyone has been there. It is an amazing city. I love it very much.

Shout out to all my Syracuse people, but it is the coldest, coldest, coldest, darkest place. I think it's like the second cloudiest city next to Seattle. And I love it very much. I love the people, but then I went and visited Charleston, South Carolina. And so then after college, I moved to-

Very different. Yeah, I moved two weeks later. But when I moved, I started noticing when I was driving that I would get clear little bumps on my hands. And I wouldn't normally think too much of it because my whole life I've kind of written things off. But if I got a tiny bump on one finger, I would get it on the other finger. And they would be...

So symmetrical. And they would be blisters. And I was like, well, that's interesting. And now I go to doctors because I'm a grown up, so I could do those things. So I went to a doctor and he said, you're allergic to the sun. Wear sunscreen on your hands. And I was like, well, that's interesting. You can be allergic to the sun?

Wait, can you be allergic to the sun? Is that a thing? I don't know. I mean, you can have sun sensitivity, right? And there are multiple different medical reasons for that, but I'm not sure I've ever heard anyone say you're like allergic to the sun. So you've developed these little bumps on your hand, these blisters, and a doctor has told you you're allergic to the sun.

Wear sunscreen on my hands. Just wear sunscreen and like cover up. None of it makes sense, right? Because am I allergic to sun only on my hands? Oh, I didn't even think about that because you should have broken out on your face. But I did it. I put sunscreen on my hands. He's a doctor. I'm a rule follower. I will do what I'm told and that's what he told me to do. So I'm like, okay, I'll did it. I put sunscreen on my hands. He's a doctor. I'm a rule follower. I will do what I'm told and that's what he told me to do. So I'm like, okay, I'll do it. We got that from when you went to the doctors and felt guilt.

Yes. We got that you were a rule follower from that. I was like, I will do everything. Well, and plus, doctors are such a rarity to me that I'm like, I will do anything you tell me. I've been waiting to be around you guys for so long. I think my opinion of doctors might be a little different than anyone else's because I'm like, I've never met you. Like, I'm so happy to see you.

But it did seem weird, not gonna lie. And also it didn't help. So my still had blisters and they hurt a little bit. But I remembered my mom growing up would have tiny blisters on her hands. And I was like, that's weird. And then I was like, gosh, I wish I could remember because again, my memory gets a little foggy of why she's and I was like, oh, she was an occupational therapist. And she said that she was allergic to latex. But I did the gap. So I didn't wear latex gloves. But I still wore

the sunscreen. I still did everything. But I did have in the back of my head that like I'm doing a little Rolodex. Like that's weird. You know? So I was like, okay, whatever. That's fine. So then I ended up moving back to Syracuse just for a brief stint and my blisters started going away. And I was like, okay, that's awesome because my hands were getting scarred up. I live in Syracuse for a little while, everything is fine. Then I moved to Charleston, bam, blisters back on my hands, on my face.

And I'm like, oh my God, I am allergic to the sun because Syracuse is cloudy. So I was never in the sun. That has to be true. That doctor's a genius and I'm glad I listened to him. So sunscreen, sunscreen, but I still would get blisters even with the sunscreen. And so that was kind of annoying because my skin started to get pretty bad because the blisters would hurt and then they would pop on their own. When I say pop on their own, I mean I would pick at them and it would hurt, you know?

So it was on your face now at this point or just your hands? So face and hands. Okay. And it wasn't debilitating. I wasn't like embarrassed, I guess, but I couldn't do anything about it. So it was just kind of like, let's move on. This is just how my face and my hands are. You know, it is what it is.

Yeah. So you had the one opinion of that one doctor that told you one time you're allergic to the sun and you went with that. And that was it. I stuck with that. Forever and ever. Yeah. Well, I just figured a doctor, once they tell you something, that is it. I stuck with it. Forever and ever. Yeah. Well, I just figured a doctor, once they tell you something, that is it.

So I'm in Charleston, South Carolina, and I just moved here. So I moved here when I was like 30, and I'm meeting new people. If you guys been to Charleston, I'm like going out more. This is like the city. And every time I go out, I feel like I'm going to die the next day

For days and days and days my hangovers are unbearable So I'm like, ah, I suck at drinking. That's just what it is. I suck at it Did you think it was like oh, I'm just older now. Yeah. No, it was the same how I felt when I was 18 to 22. So I would smoke when I would drink and then I was like I just I can't recover. Like I just can't. No matter how much water I drink I can't. And I almost thought like my friends were faking because they wanted to be cool, like I can hang and I was like I don't know. You guys are crazy. I can't, I just can't do that. So I'm starting to get a little bit older and my periods have always been a little bit heavier so I needed to find a doctor here like a gynecologist or something like that to work through that because it

tended to get a little heavier, which was crazy because it was already heavy then. So I just wanted to get my iron checked, keep my levels up. And I found the best hematologist in the entire world. And he put me on iron pills. He did all these things and nothing would really change my iron. It was always just low. So he suggested I start doing iron infusions.

So I lived by myself in Charleston. It's a whole bunch of different islands. So I lived on an island, but it only had one bridge to the hospital. And I went to the hospital, I got my first iron infusion, and I was with this guy at the time, and he drove me to get the, you know how they do like a preliminary iron infusion with Benadryl to make sure you feel fine? We'd already been through that, I was fine.

So we did it a second time, I was fine, we're driving over a bridge, and all of a sudden I felt like my feet were on fire. I mean, it was so terrible. And I'm trying to explain to this guy who we're driving, I'm like, my feet really hurt, I gotta roll down the window, something bad's happening, and it's happening very, very, very, very quick.

I can't feel my hands, I can't feel my feet. All of a sudden I felt like I can't breathe. And I was like, you have to turn around and we're on a bridge. So he had to turn around on a bridge going the other way. And I was like, I'm not going to make it. So he's calling 911. We're about a mile from the hospital. Like we're gonna make it to the hospital faster than an ambulance can't even get to me. So we turned around, rushed me in, and I am sort of in a, I guess like a shock. I can't move, I'm kind of stuck, everything feels like I'm on fire.

And I walked in and they're like, oh, she's just gonna have to wait. And he was like, no, no, no, no, no, she can't talk. She is like dying, blah, blah, blah. So I think they gave me a shot and I came to and I was like, what is happening? And they were like, you're allergic to iron. And I was like, I'm allergic to the sun and to iron?

Well, that's weird because I had been taking iron pills. I have iron in my body and then I was like, okay. So I'm allergic to iron. Well, how am I gonna get my iron levels back if I can't take iron now? In my head, I'm going shenanigans, shenanigans. Right. I see Erin's brain going.

What's happening in the brain, Erin? You know, when you have this episode, just describe, you know, I know you said you had burning and tingling in your hands and feet. Were you having a feeling of your throat closing? Did you break out in hives? Because what exactly convinced them that you were having an allergic reaction to something? Because usually when you're having an infusion, if you have a reaction, it happens immediately. Yeah, it was probably about 10 minutes after my infusion. So I got the infusion.

I left the hospital. So they are chalking this up to the IV iron infusion allergy. I'm allergic to it. Okay. You recover from this episode. I do. Okay, and then what happened? So I'm like no more infusions. So then I'm just living my life,

being miserable with hangovers, blisters on my hands, my face. Now I can't take iron, so I'm anemic. And then the next weird thing was I was at a pizza place. I was having a beer and pizza with some friends and I got a very itchy rash on my arm. And it was terrible.

I wanted to, if I could have ripped my skin off, I would have. It just, it was only on one arm, severely itchy. I went a little crazy over how itchy, like I had to, if I could have ripped my skin off, I would have. It just, it was only on one arm, severely itchy. I went a little crazy over how itchy, like I had to leave the restaurant, I had to go home. I mean, it was painful, itchy, kind of blistery, but maybe a little different than the blisters on my hands and face, more of like a rash. So I go to the doctor again, and I was like, look, this is driving me nuts.

And they were like, you have celiac disease. And I was like, oh, does that mess with your iron and can you be in the sun? And they were like, no, but you can't have bread. Well, I was going to tell you that when you were talking about your alcohol and hangover story, I had a sorority sister who one day out of the blue, we were all living in New York City, we graduated at this point, she asked the circle of girlfriends, is everybody throwing up after you have a beer? And we were like, no.

And she was like, oh, I just thought that everybody threw up after they had beer because she grew up on a vineyard and she had never had beer until she went to college. She's like, yeah, I thought, well, everyone's throwing up at college. She just thought that that was a normal thing to do. We were like, no, that is not a normal reaction. She was diagnosed with celiac disease. I kind of had that in the back of my mind when you said you had these alcohol tolerance issues. But someone is connecting those dots for you.

Yes. I am not going to believe it's celiac because I don't feel like that's interesting enough for you to be on the show. That's just my guess right there. So I call no. And then also, I just want to say that now you've lost sun, iron, and bread. You are a strong woman to keep going. Thank you. Thank you. If they take cheese from you next, it's over. Some of it was because once I started looking into what is in everything, gluten is in everything.

So I'm not kidding. I could eat like this is I'm highlighting myself so well. I could eat like a bag of cheddar cheese, but they were like, you can't have cheese in a bag because the powder that they put in the bag has gluten in it. Oh, when you open up a stick of gum, that white powder that makes it not stick that has gluten in it. I was like, ugh, everything has gluten. It was so mad. So I didn't eat gluten for a few years. So no more bread. All my carbs were taken away from me. It was very good. How did they diagnose you with the celiac disease? So this is a funny question. Did they do a biopsy?

No, just told me. They just told you. Which now I know is not how you test for celiac disease. Shenanigans. But I am that. How do you test for celiac disease? Where I'm like, I believe you. Like they could have told me any, a doctor could tell me anything and I was like, okay.

I believe you. Yeah, I mean, most of the times it's diagnosed through a biopsy of the intestinal tissue. There are people who have very classic symptoms and I don't know if that's necessarily enough evidence to say you have celiac disease. I am not a gastroenterologist, so I don't know what is the official criteria, but I feel like just taking it off of your symptoms alone doesn't seem strong enough to give you that diet.

Yeah, to take away bread from me, that's rude. They should at least take blood. If you're gonna tell me I can't have bread. And I did, honestly, I felt better immediately. I was like, wow, I have more energy. My rash was gone. I was like, okay, okay, that's fine. I have celiac disease, done. So it was really great to finally have a diagnosis or some type of reasoning of why I haven't felt so great and as soon as I had given up gluten I felt so much better. I had a lot more energy and I was like this is it. This is great. The rash went away

Clearly this is going to help me still get blisters stuff like that every now and then but yeah Celiac disease is it I definitely feel good. So that was in like 2009 and then but yeah, celiac disease is it. I definitely feel good. So that was in like 2009 and then in 2017. I worked at Saks and I am the store manager. So like I'm, it's a 25,000 square foot. I'm stressed out all the time. It's just a crazy atmosphere. So stress is just a common factor and stress takes a toll on your body.

When you work in retail, you can be sick and it doesn't matter. You just kind of go through it. Eventually it'll go away. You have to keep going. You have bosses and numbers and whatever. And I was at work and I was like, I don't feel right. And then my friend Rachel, who is the one that loves the show, all of this, she kind of was like a savior in this. Shout out to Rachel. Thank you for listening. Tell your friends. She's like, you know, did you eat gluten? Because at this point, I still have celiac disease. And I was like, no, I don't think so. And I was like, but my stomach, it hurts. But it was weird this, I, It hurts, but it was weird this I

Couldn't tell you where it hurt like if someone was like show me on this doll where you hurt There's no way I could even I just my stomach just kind of hurt It just hurt but it was enough or I was like Rachel I'm gonna leave I going to go to my doctor because it's my 40th. Part of it was because it's my 40th birthday coming up and I had friends coming into town and I was like, I cannot get sick. And who knows what I have. I'm probably allergic to something else and I need to get ahead of it before it's my birthday. So I go to my doctor who I've been going to for like 10 years and I was like, hey,

like I think I might be sick. I don't know. But there's something maybe wrong with my stomach, but I don't, I don't know. She was like, well, is it upset? And I was like, no. And she was like, what does it feel like? And I was like, I don't know. And she was like, was it stabbing?

And I was like, I don't know. And she was like, was it stabbing? And I was like, I don't think so. And she's like, okay. So she's like pushing on my stomach and she's like, does it hurt? And I was like, not really. But I think there's something really wrong with my stomach. And she was like, well, I'll put a test in for pancreatitis,

but your body temperature is 98.6. You seem perfectly healthy. And I was like, so what you're saying, because obviously doctors tell me the truth, so what you're saying is I can go celebrate my birthday because I'm fine. And she was like, that's exactly what I'm saying to you, Leah, go have fun.

So I go home and it was just kind of nagging at me. And not necessarily the pain was getting worse, but my body was like, there's something wrong. There's something wrong. There's something wrong, like over and over and over again. And I was like, well, I can't go back to my general practitioner because I was just there 10 minutes ago.

She was gonna be like, get out of here. So I go to urgent care because they have like waiting rooms. So I was like, I'm just gonna sit in a waiting room near medical equipment. And then if anything gets worse, I'll already be there because I figured you can't like, I'm not selling anything. Like I could just sit there. And so I do. I'm sorry, but that's hilarious. I thought you're like, I won't get a second opinion.

I'll just sit there in case maybe I do need one. Yes. But if I don't, I'm just gonna hang out here and watch whatever soap operas on the totally did. Why? Like I got dressed up and I watched TV and I was like, maybe I'll meet a cute doctor you never know. I mean, yeah, that could happen. That would be the best end of this episode ever. So they don't like it. And you just hang out. I think it kind of makes people uneasy. And I'm very

unassuming. I think it's called loitering. I think it's called loitering. I would have kicked you out. I'm like five feet tall and I have like a little purse and my little sax outfit. And finally, the receptionist is done asking me, do I need anything? And finally a doctor comes and he was like, are you okay? And I was like, it's embarrassing. And he was like, what is it? And I was like, well, I've already been to the doctor and I'm fine. I just sort of feel like I'm not fine though.

And I just wanted to be around equipment in case I got worse. And he's like, oh my God, come here. So he takes all my vitals, takes my temperature. He's like, no, you're 98.6. You're perfectly healthy. But I have been sitting in the chair for 30 minutes, maybe like an hour. And he was like, but you are sweating. And I was like, yeah, because I think I'm in a lot of pain. Like, I don't know. I'm a hard time telling like when they say one to 10. I think it's very subjective because like, I mean, I have like, tattooed like, I don't know, like, I don't know, it's like a four. I learned about something to just this week actually that might help you with this is

that people can perceive pain greater based on their fear of that pain. So like, tell me if I'm wrong, Erin, but in recovery and oftentimes in surgical proceedings where there is pain, people who have a higher fear of that will feel the pain more. So a little bit similar, we've done some research on in my field, if you educate a post-op person about this is what you may feel, this is normal, these are the types of therapies or medicines that can help with that. They end up taking like no medication

because they understand like, okay, yeah, there is some pain. Whereas if you have no expectations and you experience that same level of pain, they're going to be one subjectively in more pain. So I have a feeling you going, it's not a big deal to yourself over and over was maybe suppressing how you were feeling. I'm going to guess that he's going to tell you something's really wrong and that you

should have been in extreme pain. So this is all me being like, trying to figure it out. I have no clue. Yeah. And I don't know, right? Like if someone else was me, they would have been like, I'm at a 20. And I was like, I don't know, I'm a five. Because I don't know. I guess I think those are really good points. I think it is subjective. And I just don't know. But I mean, it was enough for I was sitting in a hospital stalking them. I feel like maybe.

And there is a medical term of impending doom. I did feel impending doom. That is a feeling and they have a feeling of impending doom. They can't describe what it is or if it's pain, if it's whatnot. They just have this intuition that something is not right. Yes. You're clairvoyant. That is exactly how I felt. I felt impending doom. That is probably the best in all of this time.

That is the best way to explain how I felt. And it was manifesting in my stomach. I don't know if it was like I was so anxious, my stomach hurt. But I knew that something was very, very, very wrong. So the urgent care was like, go to the emergency room. And I was like, I don't know, what do I tell them? Because there's nothing wrong. And he was like, yeah, just go. Because something isn't right. Because I'm sweating.

Like you can look at me and tell like, no one wants to go hang out in a hospital. You're not sweaty for no reason. So I was like, okay, you're sitting there. You're not like running a lap around the house. Just like chill and trying to look cute for doctors, you know, just like normal. So I still try to pick up a husband feeling impending doom, but still trying to get a man. Determination. Multitasking. Determination. Determination. So I get to the ER and that's a very intimidating place. So I park my car and I go in and I was like, hi, I'm Leah and my stomach hurts.

An urgent care sent me because I thought that would give me some validity. And so they don't also have a sense of humor. So they were like, so it's wrong. And I was like, I don't know. My stomach hurts. And I've already been to my doctor and they told me I was fine. And then I went to urgent care and they also told me I was fine. And I'm here because I don't feel like I'm fine.

And they were like, yeah, you're okay, go home. And I was like, that makes sense. That makes sense. You should have dropped the impending doodle. Because there's nothing wrong. I can't tell them that there, I was like, there's nothing. I don't know, my stomach hurts. Like, but it's kind of getting worse,

but like, I don't know if it's stress. So, okay, so I leave and my friend calls and she's like, I'm almost at your house. And I was like, oh my God, I'm so sorry. Cause my birthday is coming up. So I'm like, hold on. I'm just leaving the emergency room. She's like, you're in the emergency room.

And I was like, yeah, there's nothing wrong with me. And she was like, why are you at the emergency room? And I was like, I don't know, because I feel like there's something wrong with me, but there's not. And she's like, what? I was like, I don't know. And as I'm talking to her,

I realize I have no idea where my car is. And not like one of those, I think it's on level three or four, nothing looks familiar to me. And I was like, I think I walked, how long was I talking to you for? Cause like maybe I crossed the street and didn't know. I was like, I gotta go.

I hung up the phone and I walked back into the emergency room and I was like, is this the only garage? And they're like, yeah. And I was like, huh, I can't find my car. And my stomach is really starting to hurt. Is there someone that can help me find my car? And they're like, no.

And I was like, sure. Okay, that sounds right too. Yeah. So I left and I was like, Oh God, I don't. So I was walking around the garage and I was like, why can't I find my car? And it probably took me 30, 40 minutes to find my car that was parked right in front of the door. And then I was driving and when I was driving, it kind of felt like my head was like, you

shouldn't be driving a car Leah,, you shouldn't be driving a car, Leah. Like you shouldn't be driving a car. And I was like, I only live across the bridge and three doctors in three different places have told me there's nothing wrong with me. So I was like, I'll just get home. So I get home, my best friend meets me and she immediately looks at me and we have been friends since fourth grade.

She looks at me and she was like, you don't look good. I was like, right? Because there's something wrong with me but I have already been to three right? Because there's something wrong with me, but I have already been to three doctors, so there's nothing wrong with me. And she was also, hmm, I love your friend, but also not a great way to greet somebody. Thank you. Yeah, no, she still would greet me that way. That's a real one though. That's a real one. Right. So I started throwing up. Finally, starts happening and I'm happy because I'm like, something is wrong

with me. Something is wrong with me. Let's do it. Where are we going to go? What do we do? I'm like, let's go back to the urgent care. And I was like, yeah, but I am not in my right mind. I know that there is something psychologically not right with me.

I'm starting kind of disassociating things and pain. It just felt very weird. And we get back to the emergency room and I'm throwing up and I'm running in their bathroom and throwing up and they're like, we've already seen her. She's not coming in. She's fine. And she's like, she's throwing up like right in your, you can see her. She's vomiting. And they were like, she's throwing up like right in your, you can see her. She's vomiting. And they were like, no.

And I was like, okay, can you just try again? Because now I really am sick. Not that I wasn't sick before, but I really am throwing up now. So I think they'll humored me and they're like, no, 98.6 you're perfectly fine. But I am so sick. And I was like, listen, I am going to lay in front of your fish tank on the floor until somebody lets me in the hospital. So this is where we're at.

I'm just going to lay in front of the fish tank and I'm going to make everyone very uncomfortable or just let me in the hospital. And I think they called chicken and I was like, not with me. So I went right to the fish tank, I was laying on the floor, just rolling around. I'm in so much pain. My friend is rolling her eyes and she feels terrible. She's like, she never throws up. Like she just, there's something really wrong with her.

Like let her in there. Like, no. So I didn't know that people fake being sick to get pain pills. But I am the clear definition of someone who's trying to score medication. I'm clearly mentally deranged. I'm laying in a fish tank. I'm like threatening them to come back in. And looking back, I was like, Oh my God, this is so embarrassing. I didn't even know that was a thing. But I was like, of course they thought I was seeking paid medication. There's nothing wrong with me. And I'm rolling around on the ground threatening them to come back in. There's actually a term for it and it's called malingering.

and it's called malingering. You're a malinger. I don't think I've ever laughed so hard in this podcast, but as soon as you said, I look like someone tried to score some drugs, I was like, yeah, actually, when you put that lens on, you 100%. I think, I think. They ask you like, what's wrong?

Something kind of hurts. I can't ask you like, what's wrong? Something kind of hurts. I can't tell you where. Somewhere here. What I think what I need is a couple percocets. I think urgent care probably thought the same thing and they were like, we got to get this drug addict out of here. You little malingler. I was like, it was so sad. And I was like, okay, I get their point. Also, I am dying, so I don't care.

So I was like, I don't know what to do. So finally a doctor came and got me off the floor out of the fish tank and they put me in a chair and they put me in a chair and they rolled me in and I was like, I'm not going anywhere. There's something, I'm really sick. For real, there's something really wrong. So my friend Laura goes into like patient advocate,

like she is getting in this hospital whether you like it or not, let her in. So finally they take blood, take urine. I'm in a bed, I'm so happy. And they're like, what is your pain level? And by this point, it's like a 30 on a scale from one to 10, which does not help my drug seeking cause by the way. So I was like, it's a hundred.

Like the faces of anger, I'm like past the angry face. Like I was- Look at this face. And I'm like- That's the face of anger. Yeah, this one, this one isn't on there. And I was throwing up in a bag. So I was like, I'm clearly sick. But also, I think drug addicts also probably throw up if they're like, when they withdraw. So I

was like, but I not that like people look at anyone can be a drug addict. I get it. But like, I just clearly not more a drug addict. I get it, but I'm just clearly not a drug addict. This is just crazy. So they're like, you're fine. We did all these tests. Everything is fine. Your vitamins are fine. All your levels are fine.

I was like, sure. Okay. But I look, I'm throwing up. And then my friend was like, is that her urine right there? And the doctor was like, yeah. And she was like, huh, is it supposed to be that color? And we both look over and my urine is purple. What?

And I was like, that's not my urine. And he was like, yeah, that is. And I was like, well, that's not, that's not right. Right? I drink so much water. There's no way. Do I have blood in my urine? Did I eat beets? What happened? And I was like, I don't know. Can beets make your urine perfect? I don't know. I was just freaking out. I was just freaking out. And they were like, let's test her for hepatitis. And I was like, oh my God, do I have hepatitis?

Does hepatitis make your perp? And I was like, oh my God, I don't even know what hepatitis is, but I know I don't want it. And I was like, okay, okay, if I have hepatitis, fine. I already can't eat bread and I can't be in the sun. And I don't have any iron, so fine. Just I'll have hepatitis too.

So we got tested for hepatitis and it came back negative and he didn't really explain much about it was just kind of like no no hepatitis which made me feel really great but also not because I'm still kind of lost and confused on, okay, well now what is it? So then it led into more tests, more blood tests. And I kept coming in and saying, nope, all your tests are still fine. Everything is in the normal range. So no hepatitis, all my vitamins, minerals, everything perfectly in the normal range, which again, should be making me feel good, but it didn't. It made it just a little more scary. So I sat there and they were like,

we don't know what it is and you're perfectly healthy, we're gonna send you home. And I was like, my urine is purple. I'm not going home, you have to admit me. And they were like, no, we're sending you home. And I was like, I'm telling you right now, you called chicken with the fish tank thing. I will keep admitting myself into this hospital until you check me in. I am very sick. So finally I convinced somebody to check me in and I immediately go downhill very, very quickly.

I am throwing up all the time. The pain is now at like a 20. It's so bad. I'm screaming out loud. The night nurses told me to be quiet because I couldn't stop screaming. Where is the pain coming from at this point? I don't know, everywhere. Everything just kind of hurt. It was kind of impending doom,

but my body did physically hurt and it hurt everywhere. I was kind of delirious. I knew I wasn't right in the head. It was bonkers, but it was extremely painful. But again, I couldn't mostly my stomach, but I couldn't pinpoint exactly where I thought maybe it was my back. I didn't know they're doing x-rays, everything. They had to tell me to stop screaming.

It was terrible. So the next day... I had to laugh, but you sound annoying as a patient, but also like I feel for you because you look at one side and you see the nurses. You see someone sweating, who has a normal temperature, who claims to be in pain. Again, does kind of look like maybe could be withdrawal because these are, from what I've seen on TV, all things that people who are addicted to something experience coming off of the medication, but at the same time, that's not

it. Right. So there's no- I guarantee you they ran a talk screen- Oh, they did. Yeah. There's a nurse like- Oh, they did?

Okay. I didn't know they had run the. I got it. I got it. So you're being clear. I'm not a drug addict. That's test number one. Okay. All of my tests are coming back perfectly fine. Like my blood is 98.6.

You're still 100% okay. The healthiest person that's sick. And mind you, I worked that morning. I went to work. I left because I didn't feel great. Went to my doctor, went to urgent care. I've been to the emergency room three times. So this has been the weirdest day.

And it's a very fast transition from not feeling somewhat okay to like dying in a hospital. So they- And that's your birthday. So my birthday's in like three days. And it's my 40th. So I'm like, oh my God, I'm never gonna be able to celebrate your birthday. So my birthday is like three days and it's my 40th. So I'm like, oh my God, I'm never going to be able to celebrate my birthday. So the next day I'm still there.

So Rachel, again, love her. She comes to visit me at the hospital because she's like, what is going on? And I was like, it's not gluten. I don't think I've celiac disease and the doctor comes in when Rachel's there and was like we think that she is constipated. So I mean you guys have now known me for like 35 minutes. Clearly I'm not a shy person and it worked. We talk about everything and Rachel straight up was like, she is not constipated.

She took a poop at 12 o'clock yesterday. We were at work. I know. I was like, yes, you are killing me. You are killing me. Yeah. We share everything with each other. So I was like, this is amazing. It's not constipation. And then he's like, well, we think you're a hypochondriac. And I was like, oh, I could be a hypochondriac. I don't know, because people don't want to be hypochondriacs and maybe I am one. And maybe it's my long stem of never going to the hospital. And my mom taking my doctor away

and making up fake doctors has made me a hypochondriac. Because there's still nothing wrong with me. Even though I am throwing up in extreme pain and want to die, maybe I just manifested this and I am a hypochondriac. But again, my purple urine leads me to believe that I am not a hypochondriac. So my friend Laura, who was there, and Rachel are like, she's not a hypochondriac. She's friend Laura who was there and Rachel are like she's not a hypochondriac, she's very sick. So I start getting worse. I start throwing up more, my whole body starts hurting a little bit more. I'm now in there a couple

days, my dad comes down from Myrtle Beach. It's starting to get more serious. Doctors really can't, they did MRI, CTs, anything and clearly I'm not faking something screaming in pain and I'm getting a little more confused. I'm starting to get very very worked up and I feel like I'm gonna die. I was like I don't say any end to this and it's getting worse. This is really really bad. So now it kind of becomes an episode of house. I start getting all these random doctors start coming in and they're all writing on a board and I was like, oh my gosh.

Just someone figure out what's wrong with me. So I'm like curled over and again, it's so crazy when you don't, I still at this point couldn't point on a doll what hurt. Like just everything hurts so bad. I was throwing up violently and I mentally definitely wasn't there. I remember being like, I'm going mentally insane. And I was in the hospital the 17th, the 18th,

the 19th, the 20th, and it was continuously getting worse all four days. The point of confusion was almost non-existent because the pain, this sounds weird, but I was screaming. Like I was just laying there like ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhuthhhhhuthuhhhhhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuthuhuth yelling. I couldn't, it was uncontrollable. They were like, you have to be quiet. People are trying to sleep. And I was like, I can't, I don't know. And they're like, you know, and it was still like, well, what hurts so we can help? And I'm like, I don't, I don't have any idea. I just wasn't me. I was just gone. You know, just wouldn't use my phone, couldn't really have a conversation. I'm not interested in TV. I was just consumed by my body, just killing me. So the confusion part, I think was so overcome by pain that it was scary more for my dad who could see it because he could ask questions

But I'm not answering anything. I'm just you know gone and I start having that sort of seizure like Thing that I had when I was on the bridge after iron and I was like, oh no I'm gonna go into that shock again, and I couldn't really explain what was going on. Cause I was so out of it. My dad's hysterical. He's crying. The doctors are freaking out. And my hematologist was there.

Who's like the smartest, most best hematologist in the whole world. And he's looking at me. He feels so bad. Like he failed me. And I was like, no, no, no, you guys didn't fail me. Just figure out what's wrong. I'm going to die. I'm definitely going to die.

And I can't move. And then it starts'm gonna die, I'm definitely gonna die. And I can't move and then it starts to get like I am gonna die. And quickly, like within an hour, maybe I'm not gonna survive. So I'm like, okay, so just someone get me out of this, like I can't move. I talked a little bit about after I had an iron infusion and I felt like my feet were kind of hot

and then my hands felt hot and my throat started to feel like we were swelling up. My fingers would just get locked. I couldn't like move any of them and I kind of felt like I was getting paralyzed and then my tongue started swelling up and I couldn't really speak and then I was convulsing a little bit.

It felt identical to that. I'm kind of like stuck in this position like this and I look over the door and some man is like, he's a doctor, he has like a white coat on and he walks in he's kind of like, hey what's going on? It's weird because I don't really remember like this whole thing is kind of foggy and he walks in and he's like, hey what's going on? And they were like, we have a 40 year old female today is actually her birthday and she's dying and we don't know what's wrong with her. And he was like, let me take a look. And he was an osteo

doctor, bone doctor. If he's talking about bones, then he's an orthopedist, an orthopedic surgeon. My bones, and mind you, my bones don't hurt. There's nothing wrong with my bones. So he comes in and he's like, how old is she? And they were like 40. And then he was like, I think I know what it is. When I was in medical school, my professor wrote a thesis and he wanted the class to read it and had nothing to do with bones and none of us wanted to read it. It was really boring and the whole class is kind of like what does this have to do with what we're doing and he said if a woman ever comes in, she's middle-aged and she's in a lot

of pain and there's nothing wrong with her, test her for porphyria. They were like what? And so they figured out what that was, got a porphyria test, gave it to me and said, she has porphyria, give her heme. The only drug that you can get is heme and it goes through an IV and it's almost like a, it looks like a black tar and the hospital didn't have it. So they went and found it. So I didn't know it. Like I knew I had porphyria, but I didn't quite it so they went and found it. So I didn't know it like I knew I had porphyria but it didn't quite understand what it mean a lot of doctors

were confused I remember a lot of people googling trying to figure out what it was the doctors that did know I hate to use the word excited but they were excited like they mourn because I wasn't gonna die now, but to also they have a porphyria patient They get to learn they get to ask me questions. They really get to expand their knowledge on this disease So it was kind of a mix of chaos and joy and scared all at the same time My dad was crying but that I believe from relief. I just remember thinking, I am not too sure how I feel because anything I've been told, like not really allergic to the sun,

but really allergic to iron. I don't have celiac disease. So at this point I'm like, I don't know. I want to be happy, but I wasn't gonna be happy until I knew for sure that it was. So they did find the HEMA nearby hospital and they'd give me a port. And then as soon as they started to inject the heme, it made me very, very ill. I was violently throwing up,

but I could tell my body was feeling different. And I didn't know if it was better different, but I would have taken anything than how I was feeling right then. So they did it in little sections. So I had heme and then I had a glucose IV and then you have heme and my brain started to get some clarity. Like I didn't quite know what day it was, but I knew to ask what day it was, which was sad because they were like, it's your birthday. I was like, oh, great. And I started to come to you. So then I was like, okay, I'm very thankful. It did get very crowded

very quickly because news travels fast. Charleston, we have a group of hospitals altogether and they're fairly big. So once word got out, there was a porphyria patient, it got kind of hectic. My hematologist said, you're about to be the most famous person for doctors in Charleston for the next week. So I was like, oh, okay. I don't know what that means, but like I'm alive and I felt good, like really good immediately.

You know, my body was sore. I was going through a lot, but I felt like myself. And then I realized, whoa, I was very confused. I definitely was very out of it. I guess it was just one of those things. I was so out of it. I didn't even know how out of it I was till I was back. You know, and then just seeing my dad so happy

and seeing my doctor so happy, I was like, okay, I trust this situation. This feels right. I feel okay. Okay, I have porphyria. Now what in the world is this? So, you know, once being told I have porphyria clearly I have no idea what this is, my dad has no idea what this is, doctors are very scientific

and this is a very scientific illness with blood. It's a lot of like your sequences and things don't match up and you know one parent has to have one thing and another and I was like Oh my gosh, I don't what's going on. So essentially what happens is there is a mess up in my genetic sequence and when something triggers it the heme from hemoglobin carries oxygen and so what will happen is my Oxygen is not being carried and delivered the right way throughout my body. So when there's less oxygen, which is this is

where the confusing part is, is if I'm having a minor attack you know sometimes it's my brain's not getting enough oxygen. So all of a sudden I'm losing my keys, I'm losing my phone, things will just get a little confusing to me. Sometimes my stomach will hurt and it's like okay not enough oxygen is getting to my liver, my pancreas. So essentially just the easy way to think about it is all of your organs need oxygen and when they don't have oxygen they don't work properly so it's kind of like a bag of fun of what organ isn't going to work when you have an attack but the one when I was 40 are way more severe where it's your whole body so I

mean from what I know is I was like an hour away from dying. And this guy saved my life and his doctor who made him read the thing on porphyria. I want to give a shout out to that orthopedic surgeon because we get a lot of flack for being meatheads. Yeah. But we are very smart. Yes. Usually.

I will say this too. It goes as another example of us that you only know things that you've had experience with. And it doesn't make a doctor bad that they don't know a condition. It just means they haven't had experience with it. And that's why some of the things like the new technology that's becoming available is allowing some of these things to surface more easily. So doctors can discover things that maybe they're not familiar with. Although once you hear this, it's going to make your blood boil. So porphyria literally means the Greek word for purple.

If I could drop my microphone right now, I would. If you Google purple urine, porphyria comes up. The rage! Guys, if the doctor had just been like, I wonder what purple urine means. Blisters on your hands. If you Google it, cuneitainus porphyria will come up. So as we left the hospital, so I was there for a couple of weeks,

they let every doctor in Charleston come visit me. They could ask me any questions they wanted. Everyone wanted to learn the chances of meeting someone with porphyria. Like if- You're the star. Anytime I go to a dentist, they're like, you have porphyria?

And then I like like King George had proof I was like I know I know I know but if they want to ask me questions I will answer everything but I almost died I left the hospital my dad was like thank God and he was like we'll go home and I was like can we please stop at Jersey Mikes I want to get a sub because I knew I didn't have celiac disease you get that bread you get that bread girl even a I was like, I want the big boy. I want the whole thing. I'm ready. I literally before going home in the hospital for two weeks and I was like, can you just take New Jersey Mike's real quick? That'd be great.

If this isn't an ad for Jersey Mike's, I don't know what is. Oh my gosh, that's amazing. So I ended up going to a specialist, Herbert Bownowsky, who's a world renowned porphyry specialist. He definitely sounds like a specialist in porphyry. I mean, he has a fat name alone. He clearly knows some things. Listen, and he's like 90. And so I got very nervous when I met him. Because I was like, how many doctors are there? And I was like, you're not going to retire, right? But he is a world specialist. So he looked me over, told me I have variegate and AIP, porphyria, which causes blisters on your hands, blisters on your face, memory loss, like kind of like deliriousness, you can't have alcohol, no pain medication,

stuff like that, and it's hereditary. So I have no relatives on my mom's side left. They had all passed away and some of them, no one knew why. But my mom being a homeopath didn't drink, didn't smoke, wasn't stressed, didn't go to doctors. So she only had the blisters and they're very small because we're from Syracuse, so it's not sunny. It only started did I see the blisters because I moved to the south. So I necessarily probably wouldn't have even put them together if I hadn't moved here. So apparently there's a bunch of things that can trigger porphyria. The main culprits are hormones.

Alcohol is one of them. So my younger self was not a lightweight. She just had porphyria. Smoking, drinking, or no-nos. I generally have to stay away from cleansers, bleach will trigger it. So I have to stay away from that. No birth control pills, stuff like that. And then celiac disease, like why did I feel better if I don't have celiac disease?

One, I think in general people can have gluten intolerance and I think a break from gluten can make you feel better initially. But I felt better because no beer. So I wasn't drinking like I wouldn't come home and have a beer from work anymore. It just wasn't that important and I couldn't do it. So it really kind of kept down those attacks and all those minor things that I was feeling immediately, because I didn't have any of the alcohol triggers that I was having before. Are you allergic to sun?

Was that, is that actually a thing or is it like? So sun is an issue. I think maybe I don't know how. I'll help you out. To give everybody a little background on what porphyria is, we'll work backwards and think of everyone knows we have red blood cells in our body. They carry the oxygen, but there is a very specific molecule that delivers that oxygen, which is called hemoglobin. Hemoglobin is made up of heme and globin.

Heme is made in your liver and in your bone marrow. And in order to create that heme, which is called rings, porphyrin rings, and in the middle has iron, the atom. In order to create kind of like a Lego tower, you have to go through all of these called enzyme reactions. Enzymes are kind of like a spark plug that makes a biochemical reaction happen. In porphyria, you are genetically missing one of the enzymes. The enzymes don't exist because your genetic code has an error in it. So what it does is if you think of

the I love Lucy episode where they're eating the chocolates, well now they're not keeping up until all the chocolates keep piling up, piling up. That's all of the precursors to heme keep piling up, piling up, piling up. And those are toxic to your body. So the pain and confusion are actually caused by toxicity, not lack of oxygen. Although that is a common misconception. And so the triggers for this can be sunlight, the alcohol exposure, stress. These are all triggers that cause the heme overproduction. And then there's too much incorrect heme, which is literally toxic to the body. And that's part of what causes the madness. So King George, if you think of if anyone watched Queen Charlotte, you know, Bridgerton, he was going mad, right?

And they, and again, it's a theory, it has never been confirmed, but that is one of the theories that he was mad because he had porphyria. He had this neurotoxicity buildup of heme protein. Also a very fun fact is that Dracula and vampires were based on people who had porphyria because they could not come out in the sunlight because of the reactions. They had the dark urine and so they thought they had dark urine because they were drinking blood. It is called the vampire disease. You're a vampire princess?

Yes. She's buffy. So yeah, so they found out and it's amazing and the best hematologist, I love him, he will Google everything. But he is very busy man. So he did just give me a new doctor and I was like, well, does he know about porphyria? And he was like, no one does, but he promised to Google everything with you. So we, me and doctor sit and we Google, there is a porphyria app where you can type in a medication and

it will tell you if you can have it or not, because also you can't have medication. So I had a hysterectomy to control my iron because those fluctuations were causing me to have an attack. I'm not allergic to iron, so that's crazy. It was just, that was basically stimulating the bad chemo. The dramatic up and down of the iron was just crashing me and then just kept putting me into attacks. Well, because you're feeding it a lot of iron, right? You're like, no, I don't want any of it. Get it out.

So they were kind of right. My body did not want the iron and my body doesn't want sun and it doesn't want alcohol or cigarettes. So it was like, it just wanted Jersey Mike's. That's it. Oh, and also because know what it does want? Because they told me I had celiac disease, I also hadn't been eating carbs.

And if you have an attack, you have to eat carbs and glucose. So glucose and carbs, from what I understood in the most layman terms that the porphyria specialist who's like such an academic could explain to me is it helps bind your blood and your sequence back together. So when I go in to a doctor they give me a glucose IV. After I had my hysterectomy they handed me croissants. When I see my hematologist, he'll give me donuts,

which it's not a bad gig. I mean, my scale is a little mad at me, but I'm like a cute old lady that has candies in my bag. Because if I feel like I'm gonna have an attack, I get... So I am a fairy vampire that carries candy at all times. I know, I was just saying saying you are the jackpot woman. But so yeah, the celiac disease really kind of hurt me because I gave up carbs, which was saving my life.

And also, no doctor still don't believe me, which is very difficult. So like, I get it, like I heard it was rare, but I didn't really believe how rare it was until I have it in my chart. So I go to a doctor who can see I have it in my chart and still won't believe me. It was insane to me but I was diagnosed with pneumonia and my doctor was sending me home and I was like, no, I'm having a porphyria attack and he was kind of like, I don't think

so, we're going to send you home and I was like, no, no, no, no, no, you have to call an ambulance. I'm having and he's like, I don't know. So I talked to my hematologist and I was like, listen, Dr. Klinsky, what am I going to do? How do I convince people am I going to do? How do I convince people that I have this disease? And he was like, after this visit, this was tricky because I had to call him to say, hey, can you vouch for me?

And I told him, you can never retire because you're my voucher. I just have to say, can you call my doctor so he can, even though it's in my chart and I have it in there from multiple people so a few years ago they sent me to a geneticist he's amazing and even he when I met him he was like okay so we're here to test you for porphyria and I was like yeah I guess I need 17 people to tell me that I have it so it's in my chart until someone believes me, but I'm getting nervous because someone's not gonna take it seriously and give me something

I'm not allowed to have. And he was like, okay, you know, it's not very common, but yeah, we'll go ahead and test you. And four days later, and he was a very serious man, very nice, and he called me in, he said, got your results, you know, come in. And I was like, maybe I don't have porphyria because so many doctors are doubting this.

And I was like, I don't know. And I got in and he is smiling. And I was like, okay, so I don't have porphyria? And he was like, look, I know it's inappropriate for me to be smiling, but you have porphyria. And I was like, yeah, I know. And he was like, I can't believe it. I like literally can't believe it. And he geeks out, pulls up his charts of genetic sequences and walking through like, this is

exactly how we know. This is exactly how we know it's variegated. This is how we know it's AIP. Like you have, like you have porphyria. And I was like, yeah, I know. Can you put it in writing or make me a plaque or like do, like I love tattoos. Do I need to like put it on my forehead?

I can post Malone it. Like, what do I do? And then he asked me a lot of questions, like how do I feel, how do I deal with this? I mean, doctors geek out because they can actually ask somebody questions. And then he was like, do you have any relatives that we could fly here and we will pay you

and they can stay here for a week just so we could study them because it's hereditary. And I was like, no, they're all dead. He's like, oh, that's a shame. But I think he was like, it's a shame that I don't get to test anymore people. Again, so nice, but it's just so rare that people geek out over it.

And every time I go to a doctor, they're like, oh, did you know King George? And I was like, yes, I do know. And then I'm worried that they're gonna think I am like the Mad Hatter because it always is connected to King George going crazy or like Van Gogh was locked up in a mental institution. And I was like, oh gosh, this is not a cute look for me.

But even with the geneticists, the world renowned porphyria doctor and my hematologist, I still have to make sure they understand that I really have porphyria. And then once they find out, a lot of people come to visit. They really, especially when I get a heminfusion, oh my gosh, every nurse will come in because if it ever happens again, they're not gonna know what to do and it looks like black tar. So they're geeking out over what they're putting in my body.

And at first I was like, this is a little uncomfortable because you're injecting it in my body right now. Here, give me a minute to kind of like, come to peace with this. But it makes me happy how happy they are because everyone likes to learn, you know. So it does feel good to kind of like help people, but people don't believe it. So he...

I don't think it's because they don't believe it, but I think it's because they don't understand what that entails. Right. Yeah. So if I hear a doctor say you're perfectly fine, I immediately go to the emergency room. understand what that entails. Right. Yeah. So if I hear doctors say you're perfectly fine, I immediately go to the emergency room. But it's only happened twice. I have small attacks, but I control it with candy and bread.

So that's fine. No offense, but I'm jealous that my medical treatment isn't candy and bread. That is the best part of it. In terms of treatments, that's kind of great. Yeah. Give me candy bar sandwiches. It's a little thing I invented. Wait, really? You eat a candy bar sandwich?

It sounds both intriguing and gross, but I'm sure it's good. That's the, I mean, after 40 minutes, that can't surprise you guys. So yeah, so I'm still living with it. I have a doctor, Dr. Google with me and my hematologist will Google. So now I'm just living with it now that I know and I'm really happy that Rachel reached out and she's like, you have to go on this show because everyone should know about it because it's hereditary, right? So like if my whole family had it, there has to be way more people out there that have it. But it's so confusing. And I think if my

mom hadn't made up, you know, the pothead doctor, and I didn't was forced to listen to my body, I may not have trusted my instincts as much. So I think there's a lot to be said for it now, especially since I've been misdiagnosed so many times that now I just demand things when I go in. Like I'm like, this is what I need to be tested for. This is it. And if you go in with a very sense of purpose and look at like, don't be goofy, Leah, and like stare them in the eyes and say, this is what I need to do. They'll do it. So doctors really at the end of it have really turned out to be fantastic. It was just my way of communicating with them of like, what I need, what's important. And they usually now will follow protocols and such. And I tell people who have rare diseases,

you know more about your disease than 99% of the doctors you're going to come in contact with. Yeah. Right? Because you are going to go to the dentist, you are going to have physical therapy at some point, all right? And it's very important that you take ownership of that power and that expertise and you work with them in partnership to get you what you need. Because in the end, they are still the gatekeepers to the care and you have to work

with them. But it doesn't help if they don't know what porphyria is. Porphyria is a disease of the liver. So that's where all of the drugs are metabolized. So pretty much any medication you take is going to have some sort of effect. But the dentist may not think about that when you are getting your root canal and they don't plan for that. Yeah, like anesthesia. And all of my doctors know each other.

So they will all have a conference called now having that family of doctors that care and understand and don't look at me like I'm crazy when I go in, you know, and I'm like, something hurts. And they're like, let's Google it. Is it porphyria or is it menopause? We don't know. It's like a fun game. This was an insane story in more ways than one. As I said, I had to do a lot of work to prepare for this episode, but I'm so glad that I did because I learned. It was as if I was going back to organic chemistry class. And, you know, it's that technical and detailed of an issue. And so I

certainly don't blame those original physicians for not thinking porphyria. But it proves the point that the reason why we can't just be so hyper specialized is because if I never heard that story about porphyria, how am I going to help you even though I'm a OB-GYN? And the fact that that orthopedic surgeon thought about that was saved your life. Saved my life. It was amazing. This was incredible. Thank you.

Thank you guys. Seriously, thank you. I know I'm goofy and silly, but you know, after almost dying a couple times, the things that are important, you know now, and if one person listens to this and it helps them because I have been there and just know you're not crazy. Like you can be crazy in the fun way, but if you feel like you're crazy, you're not like just be your own advocate. Find yourself a Rachel. Find yourself a Laura. Find yourself a Dr. Kalinsky.

Find yourself a fish tank. Find yourself a fish tank. You know, own it. I feel like Steven on SNL where he's like, this story has everything. Vampires, kings, goldfish. It really does though. This was a wild ride.

And I think the one thing that stuck out most to me, and I know we've talked about advocating for yourself before, but the pure determination she had to literally, A, recognize that she was looking crazy, but still refusing to adapt and getting in her way, right? Like she was going to stay in front of that dish tank. She was going to get the care she needed. And the sad reality is that sometimes that's what you have to do to get treatment, is you

have to be and feel a little freaking crazy. Yeah. And the fact that she had friends who were like an independent voice to vouch for her, I think also, and I call these the North Star believers, They are the ones who are, they're not going to let you give up on yourself, but they're also not going to let anyone else give up on you. And so I think having Rachel and Laura, her friends there certainly helped her, but really, it came down to her and her self-determination that she knew her body the best. She knew something was

not right and she wasn't going to take no for an answer. Yeah. And I'm just thinking to what you just said, and it just dawned on me. I don't think we talked about the friends enough, but I think sometimes it's the difference between you seeking care and not seeking care is having that validation because it is so easy to feel crazy, right? I know myself that I've struggled at times to look into things because I'm like, maybe

I'm overreacting because again, we've talked about this in past episodes, women are taught that we overreact too much, which is hilarious because if you've ever met a man who's got a cold, you know that that's not accurate. The man flu is a very real thing. So it's just fascinating to see that that often is the reaction. But again, she had to make that choice to sit in front of that fish tank and demand attention. Yeah. And when you go to an ER, you are first encountering the ER triage, which is traditionally staffed by ER nurses who

are very seasoned in what they do and they are trying to triage, okay, are you impending death? Are you someone who, you know, can be seen in an hour? Are you someone who maybe we will do some quick vital signs and labs and they are the true gatekeepers to the ER? And so so as she said, besides the fact that she just felt like she was off, she didn't have any proof. There was no fever, there was no tachycardia. She just knew it deep down. And sometimes just knowing that isn't enough to convince the gatekeepers that you are worthy of an investigation. What would you have done differently

knowing what you know about Nurse Triage? Is there anything you would have done differently or would you sat in front of a fish tank too? Oh, if I was Leah, I mean, she did everything. And I've said this before in other podcasts, if you are asking to be admitted to a hospital, you are very sick because nobody wants to be admitted to the hospital. So that is one red flag in a alarming way that something is very, very off.

And I think it's also very discouraging for the doctors and staff to keep running tests and nothing coming back is abnormal. And she's getting sicker and sicker. There's nothing scarier to a doctor than that moment of like, what is it? And the fact that she had a super, super rare disease where you can't just pick up this disease on your regular lab panel or your CT scan or whatnot.

You have to order the test knowing what the disease is in order to get the diagnosis. So if no one thought of porphyria, she was never going to get that porphyria test. Shout out to the one doctor that thought of it eventually because that really changed things for her. What I think's really interesting about her too is like she grew up in such a non-medical world. And I think it's interesting because in a way that made her more connected to her body because she was raised kind of treating how her body felt

versus maybe other people who would be more traditionally looking at their health by like their temperature or like traditional signs, right? So it honestly, you know, we joked about that a lot, but it might have made her a stronger advocate because she was so in touch with her body. Yeah. And it's just a reminder that we are the experts in our body. And I was glad I could give her some words of that phrase impending doom because it's probably something she has struggled for a while to describe to people. But it is a well-known kind of feeling. And I think, again, anything that we can do to, we're trying to provide these proof points, right?

To say like, yes, we really do have something. When you keep going to the doctor and they tell you, oh, it's just anxiety or oh, it's too much stress. We're always looking for those proof points. You're like, no, it's not the bread, right? Like, it's not the sun. And sometimes because we think, oh, well, just because someone said it who has a degree, we think, okay, well, that is what it is. But, you know, listen, 5% of all Americans are misdiagnosed every year. That's 12 million people. So it's happening a lot. And I would, I would also say this, that doctors are imperfect people.

Doctors have bad days. Doctors make mistakes. Doctors miss things. And I think we need to acknowledge that at times, they're gonna get things wrong. Not intentionally, not on purpose, but that's just being human. So if you don't feel like

something's working for you, if your problems aren't resolved, it's okay to question those things. But I would also say, it's not a good approach to also be like all medicine is bad because you had one negative experience, right? I think we think a lot, especially around medicine and absolutes, and the reality is it's kind of a gray subject matter. People are doing the best with the information they have, which is always going to be limited because nobody is all knowing.

And I think Leah's a great example of that, where she had obviously this terrifying moment of almost dying due to a misdiagnosis, and yet she still is obsessed with her current doctors and loves them and is really grateful and really appreciative of the work that she can do in partnership with them. Exactly. Because once you find that team of doctors that has signed up to unequivocally care for you, you immediately understand the value. And even on the end of it, she's like,

there's still times where people don't have the answers. But again, you don't need somebody to have all the answers. You need to have someone who has the desire to find the answer you need. Absolutely. Well, until next week. The Medical Detectives is a soft skills media production produced by Molly Biscar, sound designed by Shane Drouse. If you have a medical story you'd like to see featured on the Medical Detectives,

please email it to stories at themedicaldetectivespodcast.com. 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

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