Episode 86 – POTS Diaries with Jamie Lynn from KY

00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive. This is the Standing Up to POTS podcast.

00:29 Jill (Host): Hello, fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode at the POTS Diaries where we get to know someone in the POTS community and hear their story. So today we're speaking with Jamie, who kindly volunteered to share her story so that the rest of us might benefit. Jamie, thank you so much for being here today.

00:54 Jamie (Guest): Hi. Thank you for having me.

00:56 Jill (Host): So, let's start off with where are you, because we can hear some birds chirping and it sounds nice and naturey.

01:03 Jamie (Guest): I'm actually in Kentucky.

01:05 Jill (Host): OK, any more details?

01:08 Jamie (Guest): I'm hiding out in my office.

01:11 Jill (Host): And I see plants, are you really into gardening or anything?

01:14 Jamie (Guest): No, my mom is. She's the one with the green thumb.

01:18 Jill (Host): Very nice. Yes, I see lovely plants. How old are you and have you always lived in Kentucky?

01:23 Jamie (Guest): Yes, born and raised in Kentucky - small town. I’ve lived three or four different places in Kentucky, but for the most part they are small towns. I am 28. I will be 29 in July.

01:34 Jill (Host): How would your friends or family describe your personality?

01:38 Jamie (Guest): The ones who don't know me very well would say I'm shy and I don't talk much. The ones that absolutely love me and know me will tell you “The second she opens her mouth, you're going to regret it, 'cause she will never shut up.”

01:51 Jill (Host): [Laughs] OK, so what are you passionate about when you talk a lot, what do you tend to talk about?

01:56 Jamie (Guest): My cats. I used to talk about food, that's a little bit different now, 'cause POTS has changed how I'm actually allowed to eat. I used to talk about my workouts. I loved working out. I used to run 5K's. I’d run a mile a day. I’d do an hour of Zumba, if not more, every night, and POTS took that, too.

02:17 Jill (Host): Yeah. You know, it's funny, I was actually a Zumba instructor for a little while. And yep, POTS took that. But someday I think we'll laugh because I was feeling that Zumba, when we're old, is gonna feel like Jazzercise felt to people of an earlier generation, right, where it seems so funny and silly later on, but it's fun, right?

02:36 Jamie (Guest): Yep. I kept my instructor 'cause I'm thinking maybe one day I'll actually get to teach again, but don't know about that. I like to go to the classes and sit in a chair and I'll do the arm movements.

02:47 Jill (Host): Oh, that's a good idea! If we were to make you brag about yourself, what are you good at?

02:52 Jamie (Guest): Oh... cooking 'cause I can still cook, I just can't eat it all. [Laughs]

02:57 Jill (Host): So that's lucky for your friends and family, it sounds like.

03:01 Jamie (Guest): Oh yeah, my friend, she tells everybody. If she makes you anything, make sure she makes you her sugar cookies 'cause, that's what you have to have.

03:08 Jill (Host): Ahh, I was going to say, what kind of cooking do you like doing most?

03:12 Jamie (Guest): I like my chocolate chip. My friend loves my sugar cookies, especially with the icing. I have to pile extra icing on hers.

03:20 Jill (Host): OK, so you had alluded to stuff you liked to do before POTS. Can you just give us a brief snapshot of your life before POTS?

03:29 Jamie (Guest): I was a firefighter EMT. When I wasn't at the fire department, I was at the gym or I was running. Most likely, I was probably the one cooking at Firehouse, 'cause everybody knew well, she's the one who cooks, she's good at it, you make her do it. [Laughs]

03:44 Jill (Host): So it sounds like a very high energy life.

03:47 Jamie (Guest): Yes.

03:48 Jill (Host): How did you like being an EMT and working with the fire department?

03:51 Jamie (Guest): Oh, I loved it.

03:52 Jill (Host): What was like an average week for you? What kinds of stuff did you do?

03:56 Jamie (Guest): I would work two to three days a week, 24 hour shifts. Sometimes I would work part time shifts and do twelves in between that. My favorite was the community events, especially with the kids. I think that's what I miss the most, being actually out in the community and no matter the looks you get from anybody, the comments, a little kid going, “I could be a firefighter?” Especially little girls doing it, 'cause you don't see that.

04:21 Jill (Host): So, have you had to do all kinds of, like, daring deeds, save people from fires, get cats out of trees? Like, what kind of stuff?

04:29 Jamie (Guest): Saved one cat. He got stuck in a shed.

04:32 Jill (Host): OK. [Laughs]

04:33 Jamie (Guest): And the owner did... he lost the key to the shed. OK, you just locked your cat in your shed. You lost your key in the process. [Laughs]

04:45 Jill (Host): How did you rescue the cat?

04:48 Jamie (Guest): We got out bolt cutters. It wasn't that big of a deal. You got a cat out of a hot shed, and they're pretty much thrilled.

04:54 Jill (Host): I bet. And so you were a firefighter and EMT, you were doing Zumba, you were at the gym.

05:02 Jamie (Guest): Yeah.

05:03 Jill (Host): You’re cooking sounds busy, and so what happened? What was your first sign of POTS?

05:09 Jamie (Guest): I had known I was sick since I was 16. And I would go into... the doctor has called it remissions where I wouldn't be sick. And last April I was at work and I got dizzy and I'm thinking, OK. I've been dizzy before, but that's normal, it's not that weird. And I got on the ambulance and the height difference of the ambulance from the floor - getting into it - I almost passed out.

05:36 Jill (Host): OK. What had you been feeling since you were young? You mentioned... between these remissions what would happen?

05:42 Jamie (Guest): I would get really weak and dizzy and shaky and that was mainly it. And then every now and then I would have really high heart rates and chest pain and palpitations. And everyone’s like, oh, that's just anxiety.

05:54 Jill (Host): And did you believe them?

05:56 Jamie (Guest): No, because I never had anxiety, not to that extreme.

06:01 Jill (Host): So how did you end up getting a POTS diagnosis?

06:05 Jamie (Guest): I actually got really lucky, one of my friends said, “If you're going to go to any doctor, you need to go to this one. He will help you.” Our first appointment, he looked at me and said, “You've been sick for 12 years?” And I said yes, he's like, “OK, you've been sick too long. We're figuring this out.”

06:20 Jill (Host): Wow, how long did it take to figure out that it was POTS?

06:24 Jamie (Guest): Nine months, from April to I found out in January.

06:28 Jill (Host): Wow, so what a great doctor. So, you just had a doctor who cared enough to keep searching with you and who didn't think it was anxiety or anything like that?

06:37 Jamie (Guest): Yeah, he looked at me and said, “I bet you've been diagnosed with anxiety several times.” I said, “Yeah, that, and I was told I was crazy a few times.” He said, “Yeah, there's a difference between anxiety, crazy, and what's wrong with you.”

06:48 Jill (Host): Wow! Tell us more about this doctor! Was he young, old, in a city, in a rural place? Like, where can we find people like this?

06:56 Jamie (Guest): He's about 20 minutes from my house. So he's in... it’s more of a suburban area where he's at. So he's about my mom’s age, so he was in his 40s, maybe 50s. He's not really that... he's not old. [Laughs] And most doctors I've been to have been older.

07:10 Jill (Host): You got sort of - it's hard to say you got “lucky” with a diagnosis of POTS in nine months, that's hardly like [Laughs] the prize of a lifetime - but once you knew what it was, were you able to get things that helped very much?

07:24 Jamie (Guest): We're still kind of going back and forth on finding things that help. We've tried several medications. Some of those have worked. He started me on a new one today. [Laughs]

07:34 Jill (Host): OK, fingers crossed!

07:35 Jamie (Guest): And he's like, “OK, you need to up your salt. And I don't care if you drink 64 ounces of water a day. I need you to up it to more.” And he's like... I said, “OK, more than that?” And he said, “I want you to be a camel.”

07:47 Jill (Host): [Laughs]

07:48 Jamie (Guest): And I’m thinking, “Oh great.”

07:50 Jill (Host): Yeah. So it's been a while since I started a new medication, but I remember the feeling of enormous hope, where I'd like oh please, oh, please, let this be the medication that changes my life. Do you feel that right now?

08:08 Jamie (Guest): Kind of, but not really, 'cause it took me so long to get this, what I fought... I fought with the pharmacy for a week to get this one to actually go through. I fought with the insurance 'cause they threw the first prescription of it out. They said, “We're not filling that medication for you. There's no need for you to have that.” And I’m thinking my doctor told me I need it. And then part of me is like I want it to work and then I've seen so much of the side effects and I've heard so many horror stories of it, it kind of scares me.

08:34 Jill (Host): You’re just hoping nothing bad happens?

08:36 Jamie (Guest): Yeah.

08:37 Jill (Host): Yeah. Boy, you know that insurance thing is kind of a shock, right, that what is an insurance company get to say. You know, it's between you and your doctor theoretically, right? It’s amazing to me. I remember learning that, wait a second, one or two or more doctors could tell me I need this drug, I can want to take it, and my insurance has the right to say it's not appropriate for me? But when you look at the contract, I guess, sure enough, they can say that it's experimental or it's not medically necessary, or I think they’ve got a few other things that they can deny it on, and so you've already had to learn how to fight that?

09:12 Jamie (Guest): Yeah. Well, this one was denied on the grounds of it's not used for POTS patients.

09:17 Jill (Host): OK.

09:18 Jamie (Guest): Well, there's nothing really designed for POTS, so how can you say that?

09:21 Jill (Host): Right! So, can I ask, how did you eventually win?

09:24 Jamie (Guest): My doctor called the pharmacy and he called the insurance himself, and most the time the doctor does not call the insurance. I got a call from him on Friday, and not his nurse, a call from him saying, “I called the insurance. They threw out the first prescription. Then I wrote it for a higher dose. You're going to crack the pill in half, but they approved it.”

09:44 Jill (Host): Interesting, OK. That makes sense in somebody’s world. So, I guess you do what you gotta do. OK, so what are your worst symptoms these days?

09:52 Jamie (Guest): Dizziness and brain fog and nausea.

09:56 Jill (Host): What does brain fog feel like to you?

09:58 Jamie (Guest): I can completely forget what I'm saying in the middle of saying it. So it's like, it's like one minute I’m perfectly fine, the next time I walk into a cloud. That's how I explained it to my friends. It's like, OK if I just randomly go off or I don't know what I'm saying or I go silent, you gotta give me a minute 'cause I'm in the cloud. It'll come back.

10:18 Jill (Host): Will you come back to where you were or will you kind of start with a fresh slate?

10:22 Jamie (Guest): I've had a few times where I've started fresh. I've also had a few times where I can remember where I’ve been. I could pick up like 10 minutes later on a sentence. And my friends are like OK, I don't know how you did that. I don't either.

10:36 Jill (Host): And the nausea, are you nauseous all the time, or just certain times of the day?

10:40 Jamie (Guest): I hate to say morning sickness, like I'm pregnant, because that's what it feels like. Wake up nauseous and about two or three in the afternoon I can eat and nothing bugs me after that.

10:52 Jill (Host): So you had mentioned that your eating had had to change since POTS. What did it used to look like and what does it look like now?

11:00 Jamie (Guest): Oh, I used to eat huge meals. I would eat whatever I wanted. My friends used to make fun of me. I could eat 2 trays of lunch when we were in high school and not gain a pound and nothing would bother me. It didn't matter what it was. I have food aversions, and I have food sensitivities that I've never had before. And now the portions have to be so much smaller.

11:21 Jill (Host): So, like, what's a food that you used to like that now you can't stand?

11:25 Jamie (Guest): Sausage. I used to love breakfast sausage and the only way I can eat it now is if it's from McDonald's. Any other way it makes me sick. I don't know... I don't know if it's the smell or what.

11:35 Jill (Host): Has this had a big effect on your cooking and your lifestyle and all that?

11:40 Jamie (Guest): Yes, because when my brother has to have sausage pizza. So does my grandpa. And I can't cook with the sausage anymore 'cause the smell of it makes me sick, and then I can't eat it either.

11:50 Jill (Host): It’s changed your eating a bunch. I'm guessing it must have changed your work or you can't possibly be a firefighter EMT.

11:58 Jamie (Guest): No, I'm not working.

12:00 Jill (Host): Alright. So, what happened?

12:01 Jamie (Guest): That was my biggest thing. When I lost that, it's like, OK, it took everything from me. It didn't just take bits and pieces, it took everything.

12:11 Jill (Host): How did you deal with that? That sounds so hard, 'cause you worked so hard to get there, right? I mean, it's not... they don't just let anybody be a firefighter.

12:19 Jamie (Guest): Oh no, you work years. You have to prove yourself. You have to go through all the training you have to go through tests, everything. It's like I went from being able to pass the physical and kicking a guy’s butt to within maybe a month or two, I couldn't lift the stretcher anymore.

12:36 Jill (Host): And did you ever have any trigger that you know of or it just seemed to randomly come on?

12:42 Jamie (Guest): If I hear the sirens, I want to go so bad. And I will... I've had breakdowns from not being able to go with them.

12:50 Jill (Host): Do you have any idea... was there any like an infection or a surgery? You know, you hear about the normal things that sometimes can make POTS so much worse? Did you have anything that you knew was factor?

13:01 Jamie (Guest): The doctor thinks it was the Gardasil vaccine, because around the time that I got sick, I finished that a month or two prior. [Transcriber’s note: the Gardasil vaccine prevents against Human papillomavirus (HPV).] And he said it, you never know how anything's going to affect you a month out. They tell you side effects for immediately after, but you don't know.

13:16 Jill (Host): Right, right. And I think that was the vaccine where they famously didn't actually record side effects longer than 72 hours, right? They don't actually know. There have been books written about this and in a couple other countries there's been investigations looking into this, and I think it's rare to find a physician who is kind of OK going there.

13:38 Jamie (Guest): I had mentioned it to him and most doctors you mentioned that and they go, “No, we're not going to discuss that. That’s not even.” And this one went, “Well that's weird, but it makes sense.”

13:47 Jill (Host): Yeah, yeah. And I mean, I can just say that there's been a number of POTS patients who have done this very interview where they don't want to talk about it while we're recording, but when we're not recording, they say that they think that was their trigger. And so, my sense is it takes a little bit of bravery to be willing to talk about that in this climate. And you hear about people who want to accuse you of creating distrust or things like that. Have you encountered any of that?

14:16 Jamie (Guest): Yes. I have family members who it's a vaccine, you’re supposed to get it. It wouldn't have been approved if you weren't supposed to get it, if it wasn't safe. And I think, how do you know anything is actually safe?

14:27 Jill (Host): Right. And even if it's safe for 99.99999 percent, there's still that unlucky few. Somebody has to be those unlucky few.

14:38 Jamie (Guest): Yeah, well, that's kind of what I figured. I always said if I ever get diagnosed with anything, it's going to be something that's really rare or it's going to be something that nobody's ever heard of. And if they do find the cause, it's going to be something that 99% of people don’t have a problem with. And pretty much that's where I'm at.

14:56 Jill (Host): I mean, that makes me think about how oftentimes, like in my nutrition work, I'll talk to somebody who says, “Well, I know I couldn't be having any issues with nightshades or lectins because reactions to those are so rare.” And what goes through my head is, “Yeah, but the rare people all end up in this population. [Laughs] We're the rare ones.” So, I'm sorry. That must feel horrible, to feel like you were doing something that you thought was gonna protect you and improve your health, and I guess there's no way we should just be clear to, you know, it sounds like there's no perfect proof but to suspect that instead it took so much from you.

15:29 Jamie (Guest): Yeah, I was 15. I turned... I turned 16 two months later, and that's when I lost everything. You're 16, you're getting your license, you're finally getting some form of freedom, and I lost mine.

15:41 Jill (Host): Did things get bad at 16, but then you kind of made a comeback? How did you go from that to then qualifying for the fire department?

15:50 Jamie (Guest): In a weird way, I don't know because it's like, it's like my entire body shut down. And about 18 or 19 it got better and you have to be 21 to be on a fire department, at least where I'm at, to be paid. And I had a brief spell between 20 and like right before I turned 21 where I was sick. And it got better all of a sudden and I don't know how it did that. My doctor still has no idea how I do that because I haven't done it since, and he said they're not long enough spells to where you wouldn't have gone into one by now. But he said it had to be POTS either way because the symptoms always line up exactly the same.

16:27 Jill (Host): Yeah, so you were able to come back from it before, though. Does that give you hope that maybe you can come back from it again?

16:33 Jamie (Guest): Oh yeah. There's always that part of me that says maybe one day I'll wake up and I won't feel like crap anymore.

16:40 Jill (Host): So what kinds of things are you doing that seem to maybe be helping at all?

16:44 Jamie (Guest): Right now, rest is the thing that's helping me the most. It used to be that I could drink crap tons of water and that would help. Lately, the last year or so, but nothing has helped. Not like it did before.

16:58 Jill (Host): Yeah. What do you do now for enjoyment or fulfillment now that you can't do some of your old favorite things?

17:06 Jamie (Guest): I spend a lot of time at home. I have my cats. I tell everybody their emotional support animals and if I could put them in a backpack and take them everywhere with me, I would. I found creativity. I think I've always been a little artsy and I've always had that little side. And then I started a YouTube channel. I share this story, I share a lot of my other life, and a lot of stuff I like to do other than my POTS stuff. All my friends are like, “All your YouTube is about POTS.” Like, no, it's not. Actually sit down and watch a few videos, there's a lot of stuff in there that isn't POTS related.

17:37 Jill (Host): Do you want us to share the link in the show notes so that people can find it and watch it?

17:41 Jamie (Guest): That's fine.

17:42 Jill (Host): Have you met people that way?

17:44 Jamie (Guest): Yes. I get random messages all the time saying “I have POTS or I have a chronic illness and I didn't know there were other people out there.” I didn't realize people were sharing it. I found chronic illness YouTubers around last year when I started getting sick. Like, I'd always shared bits and pieces 'cause it's been my life for 12 years, but I've never realized anybody was actually out there sharing it the way I was until somebody randomly found me and said, “Hey, this is my channel. You need to check this out.”

18:19 Jill (Host): So that's neat. So there's probably people right now watching some of your videos feeling less alone. That must feel pretty cool.

18:25 Jamie (Guest): Yeah, I just want to help people. I felt helpless for so long, and when you have people telling you, “I can't help you,” honestly, if somebody can't help me, that's what I want to be told. But at the same time, being told “I can't help you” is one of the worst things ever.

18:39 Jill (Host): So, what helps you cope?

18:41 Jamie (Guest): My friends, my family. I've cut out a lot of people, I've lost a lot of people because of this, but the ones I have kept, that's how I get through it. And I found outlets I like a lot more. I get outside a lot. When my friend keeps telling me, “You need to try therapy,” and I can't find a therapist that understands this, and every time I've tried it, it goes back to like, If I wanted to be shrinked, I would go to a shrink.

19:05 Jill (Host): What is the best kind of support people can give you nowadays?

19:09 Jamie (Guest): Understanding that I am not going to be able to do what I used to do. I had a friend who asked me the other day, “Are you going to be able to go with me if I go to the mall?” Or OK, what mall are we going to? Are we going to the one we have to walk around and it's air conditioned or are we going to the one where it's outside? And if I collapse are you going to stand there and go “I don't know what to do,” 'cause I've had people leave me. I've collapsed in the middle of the store and people just walk off like they don't know me.

19:35 Jill (Host): Does it come on fast, that you just collapse quickly?

19:38 Jamie (Guest): Every now and then. I've had a few times where I've known and I can manage to sit down and I'll still pass out, but I've had a few times where I'm perfectly fine and I'll just hit the floor.

19:49 Jill (Host): That’s rough. So, is there anything that you wish you knew about POTS sooner?

19:53 Jamie (Guest): I wish I'd known it would have existed. I had no clue and everybody goes oh it's really common, but nobody knows what it is and I'm thinking, OK, well that makes sense. But I had come across almost everything in my research that I had done and never came across POTS.

20:09 Jill (Host): Did you have any leading theories on what you did have?

20:12 Jamie (Guest): My friend had a lot of the same symptoms I did. And if she's listening to this, I'll probably end up dead because she'll kill me for telling everybody. [Laughs] But she has a really rare form of anemia and I thought I had that.

20:24 Jill (Host): Yeah, well, especially with POTS having so many different symptoms, I can imagine it's not that hard to think you have 100 different things. I know I did before I figured it out.

20:34 Jamie (Guest): Oh yeah. Well, that was my main one. And then I thought I had a tumor. I found some kind of tumor that had every symptom I had, was the exact same, I’m thinking, OK. I went from I'm anemic and I can treat it to I'm gonna die. [Laughs]

20:50 Jill (Host): [Laughs] So it's kind of good to know that an EMT can do that, too. I thought maybe that was just, you know, those of us who had no medical training.

20:56 Jamie (Guest): Oh, I think it makes it worse that I am an EMT.

21:01 Jill (Host): [Laughs] OK.

21:01 Jamie (Guest): So I have the medical training and I know too much and I've seen too much.

21:06 Jill (Host): Ah ha. Has anything at all positive come from having POTS? Has there been any silver lining at all?

21:14 Jamie (Guest): I'm closer to my friends, closer to a lot of my coworkers that I had, too. They have reached out in ways that I never thought anybody would. I had been... I actually had one of them the other day ask me, “If you ever need anything with medical bills, just let me know,” and I'm thinking, I can't ask you to do that. “No, but you can ask the fire department to do that.”

21:34 Jill (Host): That's great. What does a POTS-related victory look like to you these days? What's a good day?

21:41 Jamie (Guest): Not passing out.

21:42 Jill (Host): For a whole day?

21:43 Jamie (Guest): Yeah, or if I especially now that it's getting warmer, if I can get up and if I can go outside even for 20 minutes and not come in looking like I took a shower, that's a win 'cause I'm not showering every day, that's not happening.

21:56 Jill (Host): [Laughs] So Kentucky is pretty hot, right?

22:00 Jamie (Guest): In the summer, yeah.

22:01 Jill (Host): Do you have any tips around compression stockings, because I know that, like for myself, I feel much much much better when I wear them, but then they're really hot, and so there are times in the summertime where I actually walk around with the spray bottle, spraying them down. And I've learned not to wear the black ones in the sun 'cause boy, those really heat up.

22:19 Jamie (Guest): Compression shorts. I love the socks and the stockings, especially in the winter when it's cold, but now that it's gotten warmer I... I have 3 pairs of compression shorts and I wear those on repeat. And I have a portable fan. But that does something, but it doesn't do a whole lot.

22:37 Jill (Host): Right. Have you tried any of the cooling vests?

22:40 Jamie (Guest): No, I've seen them and I'm thinking that looks cool. There's still stuff I'm looking into, especially for heat. I've gone through it in the summer, but most of my symptoms get really bad in the winter.

22:52 Jill (Host): Oh, OK. Do you get an October slide like they talk about?

22:57 Jamie (Guest): Yes.

22:58 Jill (Host): Yeah, another little mystery of the universe.

23:00 Jamie (Guest): Yeah. When I first started getting sick, I would get... in March, I would get really sick and it would last till September.

23:08 Jill (Host): Oh.

23:09 Jamie (Guest): So I would be sick all summer, but I've never had any problems with the heat. Especially last year, heat became my enemy and then I got really bad about September, October, when it started to cool off. And the doctor’s like, “That doesn't make any sense.” I’m thinking it does. Now you’re in the heat and you can't get away from it unless you go outside.

23:27 Jill (Host): So, you always have a challenge no matter what season it is.

23:28 Jamie (Guest): Yes.

23:31 Jill (Host): OK. Are you up for doing a speed round where we ask you to just say the first thing that comes to your mind?

23:37 Jill (Host): What is your favorite way to get salt?

23:40 Jamie (Guest): Pickles.

23:41 Jill (Host): What is the drink you find the most hydrating?

23:44 Jamie (Guest): Pedialyte.

23:45 Jill (Host): What is your favorite time of day and why?

23:49 Jamie (Guest): Evening, 'cause it's cooling off and I actually get to go outside.

23:53 Jill (Host): Where is your favorite place to spend time?

23:56 Jamie (Guest): Outside.

23:57 Jill (Host): How many doctors have you seen for POTS?

23:59 Jamie (Guest): Strictly for POTS, 3.

24:10 Jill (Host): How many other POTS patients have you ever met face to face?

24:05 Jamie (Guest): None.

24:06 Jill (Host): What is one word that describes what it's like living with a chronic illness?

24:11 Jamie (Guest): Strange.

24:12 Jill (Host): What is some good advice you've ever heard about anything?

24:16 Jamie (Guest): Never give up.

24:17 Jill (Host): What is something small or inexpensive that brings you comfort or joy?

24:22 Jamie (Guest): My iPod.

24:24 Jill (Host): Who is somebody that you admire?

24:25 Jamie (Guest): My mom.

24:26 Jill (Host): And why?

24:27 Jamie (Guest): 'Cause she has been through so much and she's somehow always managed to come out at the top.

24:33 Jill (Host): What is something that you're proud of?

24:35 Jamie (Guest): Being able to get through this.

24:37 Jill (Host): What is the toughest thing about POTS?

24:40 Jamie (Guest): The energy it takes.

24:41 Jill (Host): What is an activity that you can enjoy even when you're feeling really POTSie?

24:46 Jamie (Guest): TV.

24:47 Jill (Host): Do you have any little tricks that help you fall asleep?

24:50 Jamie (Guest): I use a pregnancy pillow.

24:52 Jill (Host): Do you have any little tricks for things that give you energy?

24:55 Jamie (Guest): Not really.

24:56 Jill (Host): What is a gift that you would have sent to every POTS patient on Earth if you had infinite funds?

25:03 Jamie (Guest): My compression shorts. Those things are awesome.

25:06 Jill (Host): What is something you are grateful for?

25:09 Jamie (Guest): My cats.

25:10 Jill (Host): Finish these sentences please. I love it when...

25:14 Jamie (Guest): My cat lays on me, especially when I'm sick.

25:17 Jill (Host): Very nice. I hate it when...

25:19 Jamie (Guest): When people think I can do things just because I used to be able to do all.

25:23 Jill (Host): People might suspect I'm a POTSie when...

25:26 Jamie (Guest): I have to lie down out of nowhere.

25:29 Jill (Host): OK, that leads into my next question. Have you ever had to sit or lay down in a weird place because of POTS, and if so, where was it?

25:37 Jamie (Guest): I laid down in the bay floor at Firehouse last year. I went in for a visit to see them real quick and then just ended up laying down at the bay floor.

25:46 Jill (Host): [Laughs] Is there anything you'd like to say to your fellow POTS patients who may be listening?

25:52 Jamie (Guest): That it existed.

25:55 Jill (Host): And last question, why did you agree to let us share your story today?

25:59 Jamie (Guest): Then it's a fight, but it's worth it because I don't want anyone else to have to go 12 years and be told they're crazy, that they're making it up, when they're actually sick.

26:08 Jill (Host): Yeah, it really, really stinks. [Laughs] But I'm so glad to talk to you now, and I really thank you for sharing your story and your insights with us. And I know everybody’s pulling you so that things will hopefully get easier and better. It was great talking to you. And hey listeners, I hope you enjoyed today's conversation. We'll be back again next week. Till then, thank you for listening. Remember, you're not alone. Please join us again soon.

00:26:38 Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you. This show is a production of Standing Up to POTS which is a 501(c)(3) nonprofit organ. You can send us feedback or make a tax-deductible donation at www.standinguptopots.org. You can also engage with us on social media at the handle @standinguptopots. If you like what you heard today, please consider subscribing to our podcast and sharing it with your friends and family. You can find us wherever you get your podcasts or at www.thepotscast.com. Thanks for listening. © 2022 Standing Up to POTS. All rights reserved. [Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopots.org]