POTS Diary with Jessie, who was diagnosed with POTS as a teen but didn't receive treatment until much later

Diary with Jesse [00:00:00] Jill Brook: 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 of the POTS Diaries where we get to hear the tales of others in our community. So today we are speaking with Jesse, who has kindly volunteered to share the tale. Jesse, thank you so much for being here. [00:00:21] Jesse: Thank you. [00:00:23] Jill Brook: So let's start with the easy stuff. Where are you? What is your age, and what are some basics we should know about Jesse? [00:00:31] Jesse: I just turned 26. I've been born and raised in Washington. I live in a really nice area called Kirkland. Some basics about me. Yeah, I don't know. That's pretty basic. [00:00:42] Jill Brook: Okay. Tell us about Kirkland. What is it known for? What is it like? [00:00:45] Jesse: Kirkland is known for being a very fancy area with lots of activities to do in a beautiful waterfront in beautiful people. [00:00:55] Jill Brook: Wonderful. What kinds of activities do you like to do there? [00:00:58] Jesse: I like to go down to the waterfront. There's like a lot of yachts out there. So you can look at the yachts or kind of walk around, you know, there's all these restaurants. There's also some beautiful little trails every once in a while. So all those sorts of things. [00:01:14] Jill Brook: Great. Okay, so what are some things that your friends or family would say about your personality? [00:01:20] Jesse: My personality that I am pretty funny. That's one of the first things that people tell me that I'm funny that I have a little bit of gallows humor. Let's see what else... that I'm nice and caring. [00:01:32] Jill Brook: Okay. So tell us what are you passionate about? [00:01:36] Jesse: Oh, I am passionate about a lot of things I love psychology. That's probably one of my favorite things is psychology, mental health. I'm also very passionate about art. I love photography. Specifically film photography. [00:01:50] Jill Brook: Excellent. What is your favorite film of all? [00:01:52] Jesse: Let's see. That's actually a really hard one cuz there's so many different categories, but there is this vintage. I think it was called like gas lit or something like that. It's about the psychology of this woman being gas lit and it was black and white. But the whole premise is about this light that gets turned on only when this man is in the attic or something, and it's a gas lit light. So it's just, I don't know. It's this nerdy thing. [00:02:16] Jill Brook: Yeah, well that one's famous in the patient community because the gaslight is what made her think that she was going crazy? [00:02:24] Jesse: Yes. Yes. So you know about it, right? [00:02:26] Jill Brook: has been co-opted and it's pretty relevant. Yes. Yes. Yeah. Great movie. Okay, so if we were gonna ask you to brag about yourself a little bit, what are you good at? [00:02:36] Jesse: You know, I'm a pretty humble person. I'm really good at communication. I would say communication. Baseline really good. Can talk to anyone, carry a conversation with anyone. People love to talk to me. I love to talk to them, so, [00:02:49] Jill Brook: Excellent. Let's get right up to your POTS journey. Did you have a life before POTS symptoms? And if so, can you give us a snapshot of what you were doing at that time? [00:02:59] Jesse: Yeah, I definitely did. So before POTS, I had a fitness journey. I did gymnastics, I did tap, I did ballet, I did softball, I did swimming. I wanted to become a lifeguard, but my passion was in theater and acting. So I had done a total of six years of theater and I became a thespian. It's just a, like an association when you put a certain amount of hours into theater production. I was doing all sorts of stuff. I was pointing towards that career of acting and then I got sick. [00:03:30] Jill Brook: What was the first sign that something was wrong? [00:03:32] Jesse: Well my grandparents took me to it's just like a Walmart, but not. And I couldn't bring myself to get myself out of the truck and I fell asleep in the truck and I slept. I would say for three months straight. I just slept all the time, so, [00:03:53] Jill Brook: and what did you think was going on at the time? [00:03:55] Jesse: My friends and family thought I was on drugs. That sucked. Cuz I looked like I was, I had these big under eye circles and I was constantly sleeping. I wasn't eating because every time I ate I felt really nauseous. I had these random bouts of pain. So the doctors thought it was like mono or Lyme. So, yeah, but in hindsight, I probably had symptoms way back when, you know I remember in sixth grade in elementary school, in PE I was running, I was so excited. I was having such a good time, and I looked down at my hands and my hands were spotty and I thought it looked really cool, you know, cause I was just a kid. And then in ninth grade we had something called the runs. The runs like diarrhea, but it's the runs where you had to wear a fitness monitor around your chest and you had to run a mile, like it was like a once a week thing. And then my heart rate monitor was indicating that my heart rate was at 210. So, I was really starting to experience symptoms even back then. But because I was young, truly, I don't know, but I think I got sick with another thing that just exasperated the POTS because when I was 16, which was 10th grade, so. The year after the ninth grade, the runs was when I fell asleep in the ikea, you know, truck parking lot. [00:05:25] Jill Brook: Oh, so how long did it take you to learn that you had POTS, and what was that experience like? Did you have a nice, quick, easy time in it, or was it a real nightmare like some patients have. [00:05:35] Jesse: It was a nightmare. You know, fortunately I live in such a wealthy area. There are doctors here that are phenomenal. But just getting to the right doctor. Don't even get me started on cardiologists. They don't know anything. I would go to the doctor's probably like once a week, just the urgent care walk-in clinic. Cause I would have this pain and it was a sharp stabbing pain. Lo and behold it was tachycardia, but no one cared to tell me that. I remember at one point they handed me this piece of paper. I can't remember if it was red or green or what. And it was a mental health checklist. So they were really just gaslighting me full circle here trying to tell me it was in my head and at one point a doctor wanted to put me on an SSRI. That really hurt because at this point I was sad. Yes, but it was because my life was going to shambles realistically. You know, no one was believing me. But it wasn't until I found this primary care doctor who had a POTS patient, and she referred me to a neurologist instead of a cardiologist. And the neurologist sent me to UDub Medical Center, neurology in Seattle, and I had my tilt table test done. And so this was in 2014 and my tilt table. . I don't know how I didn't pass out, but my, my laying down I think it was around like 64, and then when they tilted me up, my heart rate went up to 168. So I was really sick and it was proof in the pudding. But after that, you know, I was sick again for months. I was in a flare for months because no one knew how to help me, you know? So I went back to the doctor. [00:07:16] Jill Brook: So even once you failed the tilt table test and presumably had the POTS diagnosis, that didn't lead to good help? [00:07:24] Jesse: Nope. Did not at all. So because this was back in 2014 when POTS was considered rare so. You know, went back to the UW neurologist. They're like, you have a condition called POTS. We don't know why you have it, but you have it. And you can either take salt tablets and we will prescribe you salt, which I got a prescription for salt. Or you can take this medication that increases your fluid in your body. I didn't want that . I didn't wanna be puffy, you know? that really sucked. So I actually denied treatment other than Gatorade for up until last year. So last year was the first year where I found a new neurologist where I finally got proper POTS treatment. So from 2014 to 2021, however many years that is, that's how long it took me to get diagnosed and get treatment. [00:08:16] Jill Brook: So now that you've found a neurologist that you like and you're getting new treatment, has that helped A whole bunch. [00:08:22] Jesse: Yeah, so get this, I'm actually now doing physical training with a personal trainer so that I can start weightlifting. So doing that as a POTS person. Holy moly. [00:08:34] Jill Brook: Yeah. So what do you find helps you the most? [00:08:37] Jesse: Propanol. [00:08:38] Jill Brook: Okay. Excellent. So that sounds like a long time to kind of suffer. [00:08:43] Jesse: Yeah. Yeah. I almost didn't graduate high school. High school was awful. Yeah. [00:08:50] Jill Brook: what was the hardest thing. [00:08:52] Jesse: The teachers, the school, they did not understand, even though I had a program that allowed me to miss class they thought I was just faking it because I looked normal and I tried so hard to look normal. [00:09:05] Jill Brook: Yeah. So what made you fight through so that you graduated? [00:09:10] Jesse: Probably my mom yelling at me my loving mother, my loving dotting mother . So yeah. [00:09:16] Jill Brook: Okay. So do you feel like this whole experience has changed you as a person? [00:09:23] Jesse: Oh yeah, as I mentioned earlier, I have a bit of gallows humor and it's because of the way people have treated me. I've learned that there are some people out there who are just very selfish. And that's that. I've definitely become a bit more cynical, unfortunately. And you know, when it comes to acting like, I can't stand on stage anymore yet, maybe one day, but yeah. [00:09:45] Jill Brook: Yeah. So what are your favorite activities and hobbies now these days? Now that standing on stage doesn't work for you? [00:09:54] Jesse: Yeah, so working with my personal trainer who is educated in POTS, that's one of the best hobbies that I can do right now because it makes me feel great. Ugh. It is so good. So that's number one. Number two, I absolutely love going on walks. I love going on walks. It helps me just get out and get moving. Especially going on walks with my friends or my partner. That's great. I love blogging. I'm online on Reddit a lot, which is kind of fun. You know, that's a great laying down hobby. I play video games. Of course. That's another great hobby there. There's the good POTS days hobbies and the bad POTS days hobby. [00:10:38] Jill Brook: Right, [00:10:39] Jesse: yeah. [00:10:39] Jill Brook: right. There's the coping strategies you're proud of and the coping strategies that get you through the tough days. [00:10:45] Jesse: Yes. There you go. You get it. Okay. [00:10:48] Jill Brook: Absolutely. So what lessons has POTS taught you, if any? [00:10:53] Jesse: Oh, advocating. I learned the lesson of advocating and what that means. Yeah, that's probably the biggest lesson I've learned is advocating, and even if a person has a higher degree than you, it doesn't mean that you suddenly have to stop advocating for yourself. [00:11:11] Jill Brook: Right, right. Has anything positive at all come from your having POTS. [00:11:18] Jesse: Well, no , I will be honest with you. I hate to admit it. No, nothing. Oh, well, no, actually that's a lie. I found a partner who. , he, you know, we've been together for the last four years. We've known each other for 10 years. I found him to be so gentle and kind and knowing that I can be with him long term, even when everyone else catches up to me. Right. And they're old and crippled, you know, like, he's still gonna be by my side, I don't have to worry about him leaving me. All these other people will catch up eventually. So, I mean, that's a good thing is knowing that I have someone. There are people out there who care. That's really sweet. [00:11:58] Jill Brook: what is the best kind of support that people can give you these days? [00:12:02] Jesse: Acceptance. Just point simple, just accepting I am sick. Don't tell me to eat celery. Don't tell me to, you know, try this new diet fad. Try yoga. No, I can't do yoga. Accept me and accept that I'm sick and I will always be sick. More than likely if there's new treatment and I'm gonna try it. But you know, my new neurologist found out I also have EDS. So POTS is gonna be long-term. So it is what it is. [00:12:31] Jill Brook: So if you imagine your past self at your worst in terms of POTS, and I say that because we probably have some listeners out there who right now are having their absolute toughest time of it. what would you say to that version of yourself now that things are somewhat better and now that you have more experience and more wisdom? [00:12:55] Jesse: Yeah, well, the number one thing I would say is that you are not going to die from POTS. You will not die from POTS. POTS will not kill you. That that is my number one. Number two, there are doctors who will listen to you. You cannot give up. Number three, compression stockings are your best friend. I love them. They're great. They're like spanks, but you're for your legs. Number four. Gatorade. Gatorade or Pedialyte or whatever else, electrolytes increasing that. Oh, and number five, do not push yourself. And if you do all of those, you will be feeling like a rockstar. And even if you aren't, you will eventually, because when you first get your POTS symptom, It is at its worst, and it will be at its worst, just for a few months, and then it gets better. [00:13:49] Jill Brook: Yeah. So at this point, what does a bad POTS day look like for you? And what does a good POTS day look like for you? [00:13:57] Jesse: So good POTS day, I can go out shopping. I love shopping because sometimes the lines can be a little difficult when I'm out shopping. I can go out to lunch with my friends. I can go out on a sunny day. That's always great. Going on a walk after. You know, just experiencing life without the constant nagging. Like, Hey, you might faint. You might faint. That's a fantastic POTS day, especially if my body doesn't hurt. Those days are the best and they're more frequent than not. I probably have 90% of those days nowadays, which is fantastic. And the other 10% on the bad POTS days. What it looks like for me is sleeping for 12 plus hours. Just cuz my body's trying to recover. Feeling tachycardia that, that one sucks. And then fainting upon standing. [00:14:46] Jill Brook: Mm-hmm. So are you up for doing a speed round where we ask your poor brain to come up with the fastest answer? Just say, the first thing that you think of? [00:14:57] Jesse: Yeah, of course. You might have to edit a few things, but, okay. [00:15:01] Jill Brook: What is your favorite way to get salt? [00:15:04] Jesse: Gatorade. [00:15:05] Jill Brook: What is the drink that you find the most hydrating? [00:15:09] Jesse: Gatorade. [00:15:10] Jill Brook: What is your favorite time of the day? and why? [00:15:14] Jesse: Oh yeah, 7:00 PM because I'm not tired and my body's just waking up. [00:15:19] Jill Brook: Ah. Where is your favorite place to spend time and why? [00:15:24] Jesse: Anywhere by the water because it's refreshing and things are constantly moving. [00:15:30] Jill Brook: Mm-hmm. , how many other POTS patients have you ever met face to face? [00:15:35] Jesse: Three. [00:15:36] Jill Brook: How many doctors have you seen for POTS? [00:15:39] Jesse: at least six. [00:15:41] Jill Brook: What is a word that describes what it's like living with a chronic illness? [00:15:47] Jesse: Living in a cave. [00:15:48] Jill Brook: What is some good advice that anyone's ever given you? And it can be about anything. It doesn't have to be about health, for example. [00:15:56] Jesse: Failure is your path to success. [00:15:59] Jill Brook: Hmm. What is something small or inexpensive that brings you comfort or joy? [00:16:07] Jesse: Ooh crystals! I like finding rocks. [00:16:10] Jill Brook: Fun. Yeah. Okay. Who is someone that you admire and why? [00:16:15] Jesse: Oh, there are a ton of people I admire, lady Gaga. Believe it or not, I admire her. She has this documentary out where she discusses her chronic pain, and I really look up to her. [00:16:29] Jill Brook: Yeah. What is something that you're proud of? [00:16:33] Jesse: myself. [00:16:35] Jill Brook: What is the toughest thing about POTS? [00:16:38] Jesse: Other people? [00:16:39] Jill Brook: Can I probe further and ask what it is about the other people? [00:16:43] Jesse: Yes. Yes, you can. Lack of acceptance, judgment, mostly. [00:16:48] Jill Brook: Mm-hmm. what helps you fall asleep, if anything? [00:16:52] Jesse: Yeah, so I have the hyperadrenergic POTS, so I can't fall asleep easy, so I have a prescription for diazepam. [00:16:59] Jill Brook: What gives you energy when you need it? If anything? [00:17:03] Jesse: Gatorade. [00:17:04] Jill Brook: What is a gift that you would have sent to every POTS patient on earth if you had infinite funds? [00:17:11] Jesse: Oh heck yeah. Okay, so I don't know how to say it. It's the J B O S T compression stockings that are super expensive. If I could send that to every single POTS station, I would! [00:17:25] Jill Brook: Very nice. I have never tried the brand? That's a good endorsement. [00:17:29] Jesse: They're the best. [00:17:29] Jill Brook: Okay. Can you finish this sentence? I love it when... [00:17:34] Jesse: I love it when I get to go swimming. [00:17:39] Jill Brook: I hate it when... [00:17:42] Jesse: I I can't sleep. [00:17:43] Jill Brook: people might suspect I'm a POTSie when... [00:17:47] Jesse: they see my legs and they're completely different color than my body. [00:17:51] Jill Brook: Have you ever had to sit or lay down in a weird place because of POTS, and if so, where was the weirdest place? [00:17:59] Jesse: So I used to work retail sales and there was this little cubby in the back that was the retail window. This is a bit of a story. Anyways, I had a boss and she didn't understand POTS and I don't think she believed me. So she said I wasn't allowed a stool behind the register until I had a disability accommodation. So one time I was about to pass out, so I went behind this little cubby and these windows faced this really busy road. So I had myself propped up against a wall with my legs propped up against the window and everyone driving by saw my pants , just so I wouldn't pass out, you know? I had to hide back there from my boss. And that was that. [00:18:44] Jill Brook: Oh, doing what you gotta do though. [00:18:46] Jesse: Yeah. [00:18:47] Jill Brook: Okay. I just have a couple more questions. What do you wish more people knew about POTS? [00:18:54] Jesse: That it's real. It is real. I said earlier that I'm on Reddit a lot. I found this form for like doctor students, I can't remember what it was. And they were discussing how POTS is not real and that it's a psychology issue. Specifically they were talking about how there's not even a proper code when it comes to coding insurance with POTS. [00:19:18] Jill Brook: Well, for one thing, there will be soon, but for another thing, boy. So insurance codes are now the gold standard of what constitutes a real diagnosis. Huh? [00:19:29] Jesse: yeah. Uhhuh. [00:19:31] Jill Brook: Oh boy we still have some work to do, huh? [00:19:34] Jesse: Yes, we do. [00:19:35] Jill Brook: And is there anything you would like to say to your fellow POTS patients out there who may be listening? [00:19:42] Jesse: You're doing good, kid. You're doing good. Everything will get better. I promise. It might take some time, but you're doing everything you can do and you're doing good. [00:19:54] Jill Brook: Yeah. And last question. What made you decide to let us share your story today? [00:20:00] Jesse: I have so much experience with POTS and good experiences, bad experiences. Yeah, helpful tips. Got a ton of those, and I just really feel like it's time for me to start sharing those tips because I need to stop being selfish and I need to share them. [00:20:22] Jill Brook: So if you were gonna share your top three tips, have you shared 'em already or... [00:20:27] Jesse: You know, advocate for yourself, Gatorade and compression stockings and accept medication [00:20:33] Jill Brook: Right on. [00:20:35] Jesse: Yeah, [00:20:35] Jill Brook: Jesse, thank you so much for sharing your story and your insights with us. [00:20:39] Jesse: of course. [00:20:40] Jill Brook: really appreciate it and I know that everybody listening wishes you only the best going forward. [00:20:48] Jesse: Thank you. [00:20:48] Jill Brook: And hey listeners, I hope you enjoyed today's conversation. We'll be back again next week. Until then, thank you for listening. Remember, you're not alone, and please join us again soon.