Episode 8: POTS Diaries with Carly B.

Transcript Link: https://tinyurl.com/9v7jd739

00:00:01 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.

00:00:29 Jill: Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook and today we have an episode of The POTS Diaries where we get to know someone affected by POTS and hear about their journey. So today we're speaking with Carly Berna, a POTS patient from Arizona, who is also a board member of Standing Up to POTS. Her expertise brought together our improved website, newsletter, and this podcast, so we are very grateful for all the time and knowledge that she volunteers to help us. Carly, thank you so much for joining us today.

00:01:04 Carly: Thanks, happy to be here.

00:01:07 Jill: So maybe we can start with just some basics about you. What's your age? Where did you grow up and where do you live now?

00:01:15 Carly: Sure. So I'm currently 33. I actually grew up in Milwaukee, WI and then my parents retired to Fountain Hills, AZ when I was ten. And I currently live in Scottsdale, AZ.

00:01:30 Jill: Oh very nice. OK, so if we were to ask your family and friends a few words or phrases to describe your personality, what would they say?

00:01:40 Carly: Probably reserved. Highly academic. You know, I love to read and write.

00:01:48 Jill: Is it correct that you are in graduate school for not just one but two degrees?

00:01:55 Carly: I have my MBA from Pepperdine and actually just a month ago I graduated from Phoenix Seminary with my Masters in Biblical Studies.

00:02:05 Jill: Oh congratulations OK, so yes, you definitely qualify as academic. That's awesome. Back to the regularly scheduled questions. Can you give us a snapshot of what your life looks like leading up to when you got POTS?

00:02:20 Carly: Well, I would say when I was a child I was really athletic. I played basketball, softball, into a lot of sports. At the time I lived in Wisconsin, did a lot of things with family, and then when I was a teenager, I was nauseous a lot and so sometimes that would hinder being as active as I normally was as a child. And that nausea kind of got worse over the years. And so then it became an even greater inhibitor to my lifestyle, to the point that I really wasn't active at all, and sometimes I would be, you know, just laying on my bed or on the couch for weeks at a time without being able to move and that's of course kind of how it led into the POTS diagnosis.

00:03:10 Jill: So what did you think was going on at first?

00:03:15 Carly: Well, doctors of course thought that - first they did all of the food allergy tests to see why I was nauseous, if I was, you know, allergic to gluten or something. And thank God I wasn't because I love gluten. But, they tested my brain, they tested different GI things, all sorts of stuff and they couldn't really find anything. They basically - it took ten years to actually diagnose me with POTS, and the reason that I was diagnosed is because I had just graduated from grad school at the time and then I had started a job, and so the fact that it was hindering my lifestyle, it was now hindering my job which was more important than just like schoolwork or my life. And so I felt like I really needed to go somewhere that could help figure it out so that I could keep my job. So luckily I live in Arizona and there's a Mayo Clinic here and I actually used to work at Mayo Clinic, so I'm very familiar with them. And so I went to Mayo Clinic and within a year they had diagnosed me with POTS through the tilt table test, which I know we've talked about on other episodes.

00:04:26 Jill: So during your ten year diagnostic delay, did you ever think it was all in your head or did anyone else ever imply that?

00:04:34 Carly: They definitely talked a lot about anxiety and you know if anxiety was just causing my nauseousness, you know, instead maybe I should go to counseling or go on some type of anxiety medication. But it just it didn't feel like that really was the right thing, so I never did end up going on anxiety medication or anything like that. I just kind of like toughed it out through my symptoms, 'cause they would kind of come in waves and then they would like go away for a while and then at the end there they never went away, which is what really pushed me to go to Mayo Clinic.

00:05:12 Jill: Did you ever identify any trigger or underlying cause of your POTS?

00:05:18 Carly: No, they never have.

00:05:20 Jill: Do you think that that ten years always feeling ill and not knowing why changed you as a person at all? Or did you just kind of minimize it?

00:05:31 Carly: Definitely those last few years, I remember that I just was so sick that sometimes I would text my mom before I went to bed and say, “Please call me in the morning to see if I'm still here,” because I just felt like I might not make it to the morning. So that sounds real dark, but after going through that and looking back, I feel like during that time I learned to value every day, way more than I would have if I didn't go through that because I just wasn't sure if I even had the next day because I would just feel so sick. I would just be laying there like I'm not sure I'm going to. I'm going to make it. So it definitely changed me in giving me the perspective of, you know, how valuable every day is and, you know, not planning so far ahead but really living in the moment. And I've said before that that's such an important concept to understand, but you can't understand it without actually going through something like this. So unfortunately I'd probably say I would go through it again just to learn that because it was such a great life lesson.

00:06:35 Jill: You know, talking to you is an experience that I have, I think, speaking with a lot of POTS patients where at first, you know, your tone of voice is very upbeat and you say “Oh yeah, I was nauseous for about ten years” and at first it really doesn't sound like a very big deal until these other little things come out. Like you say, you know “Mom check on me, I'm not sure I'm gonna make it to tomorrow” and that's when it dawns on me that, “No, whoa”, this was a big deal and you have just learned to not dwell on it. So I don't want to make you dwell on the negative, but when things were at their worst, and we're only going to dwell on the negative for a moment, and then we'll hopefully get onto all the positive. But what does that look like? What are the – what are the postcards in your mind when your POTS was kind of really eating your lunch?

00:07:31 Carly: Yeah, you know, during that time I thought I had just started a new job and so I was really sick and I thought, “Man, I'm I'm going to lose my job.” I had I had moved out from my parents' house at that time, so I thought ”I'm going to lose my apartment. I'm going to have to move back home” Every day I would just be laying down, because one of my symptoms is if I stood up I would feel very dizzy and nauseous, and so I just felt like “I'm going to just lay here forever.” And even when I was first diagnosed, you know, they said, well, most likely you'll probably be overweight and in a wheelchair for the rest of your life. And so I just felt I felt like OK, even though I'm diagnosed. I'm just - this is going to be my life and so sometimes I was thinking “Well, what can I do like this? How can I live my life like this 'cause it just doesn't feel like a life worth living to just be laying here every day and not being able to do anything.” And you know, I was in my 20s at the time so I just kept thinking, you know, people take health for granted because all these 20 year olds out doing all their normal life things and I can't even like walk to the mailbox. I'm just, you know, laying here. I can't even bring my groceries up the stairs, it's just it's just a life that's you know, not a life that you want to live.

00:08:58 Jill: I know you through being on the board of Standing Up to POTS, so I know that that is not the life that you have. But people listening are probably wondering, “Oh my gosh so they said that was going to be her forever?” Is that what happened?

00:09:15 Carly: Yeah, so I'm I went to Mayo Clinic, and it actually took a year from the day I went there to actually feeling better, but they did a whole bunch of tests and they weren't all great, so it wasn't like I went there and magically I was better. One of them - they did the test where they like, put a camera in your esophagus and you know, whatever they're testing, I don't know, but it got stuck and it was so painful for five days that then they had to do an emergency endoscopy to remove it from my esophagus. It was supposed to fall off on its own and it didn't. And so, I didn't have the greatest testing experience, but you know all the pokes and prods and everything for a year before they finally - I finally landed on a neurologist. All those other tests were basically GI, of course, because my main symptom was nauseous so they were testing all these GI things. Then I landed with a neurologist and they had me do the tilt table test and another test that you're probably familiar with, but I don't know the name of, but basically they like shock your legs and make you sweat.

00:10:23 Jill: Yes, the nerve conduction tests and the sudomotor tests, yeah.

00:10:28 Carly: Yep, and then they did a breathing test where I had to like blow into something and see if I got lightheaded, which I did. So the Tilt Table test was actually really interesting because I had never passed out and so they're like, “You're just going to stand on this table, and then if you pass out, you know we'll know that something is wrong.” And I was like, “I've never passed out in my life I'm not going to pass out.” So like 4 minutes later, the next thing I knew I'm upside down and they're like I had clearly passed out. But I, you know, I really didn't think that was going to happen, so that's when they diagnosed me. And then put me on a bunch of medication because they said, you know, we think you have POTS and mast cell syndrome or whatever it's called, and I was on a ton of medication at the time and they also really prescribed exercise. And so at the time I could barely like literally walk a block. But I would walk like a block, two blocks, three blocks, four blocks, etc. And I remember when I was really sick telling myself that all I want to do is be able to run and be able to drink a Starbucks because I used to drink a lot of Starbucks before that. But then the caffeine would always kind of messed me up, so... I really - fitness for me, really was the biggest help and after they told me you know, even though you have POTS, you are going to be in a wheelchair and overweight. I was like no way I'm going to run a half marathon and so I actually, you know, I did that slow way of all getting back to running. And I did train for 1/2 marathon and I did run 1/2 marathon, really, just to have the victory over that diagnosis of, even though you have POTS, this is how you're going to live your life. But like I said, fitness was such a huge, important part, because even just two years ago and I'm, you know - within my taking my medication and feeling so much better now, but just two years ago - I live in Arizona. It's 120 degrees in the summer. It's hard to run. I stopped running for three months and all of my muscles had atrophied. All of my conditioning had atrophied and all my symptoms came back even though I was on my medication. So, I just know that for me that active lifestyle is so important, so I have to find any way to do it - you know, go into a gym, use a treadmill, whatever it is that seems to be the most important thing. So that's how I've really gotten back to having my life. Also really paying attention to my nutrition was another part of it for me and I don't - I've never heard that this is common with other POTS patients, but I know you have an expertise in nutrition, so maybe you can speak to this, but for me, eating 3 standard meals a day was really important. If I went too long without eating, I would feel really sick. So I would have to, you know, make sure that I wasn't missing a meal or even eating at a weird time, like eating lunch too late or something, or I would start feeling really lightheaded. So I really paid attention to being active and also making sure that I was eating at the same time every single day.

00:13:40 Jill: And so when you do those things, how functional are you? Can you do most of what you want to do?

00:13:46 Carly: Yeah, now I'm fully functional. There's really nothing that I can't do, and I've reduced my medication in half since I've started it. And every year when I have my check up with my doctor, we talk about, you know, can we try to go off one of the medications and just see how I'm doing? And so we have reduced it and now very very functional. The only time that I really feel anything is if I do like a burpee. Like you know when you go down to the ground and get up really quickly, I get pretty lightheaded, so I I try to avoid burpees, which I love telling my trainer, “I'm sorry I can't do any burpees.” But besides that, like maybe once every couple years, I’ll have kind of like a few days where I don't feel good and often it's when I'm traveling and so I really think it's because when I'm at home I'm so structured and when I'm in my routine I can really keep my symptoms under control, but all of a sudden when I'm in another situation where I'm out of my structure, that's kind of when I have a flare, but it's so not often that it really doesn't bother my lifestyle.

00:14:55 Jill: That's great. Do you mind talking a little bit more about the process of going from so fatigued and only able to walk a block to being able to run your half marathon? Like how long did that take you? Did you need to start with recumbent exercise? Like some patients say that if they take too many days off, then it's actually harder to do it again the next day. Like did you have any little things you learned in that process?

00:15:26 Carly: Yeah, it took years. I actually - I did run a little bit before I was diagnosed, but then my POTS just flared up so much that I just couldn't do that. I know they suggested biking and swimming and different exercises like that. I at the time I lived at a place where I didn't have access to a pool and I didn't have a bike, so I just started walking really short distances. Like I said, you know, I would walk to the end of the driveway and back. And then just a little farther. And then, you know, just a little farther. And then sometimes I would, you know, run to the stop sign and then walk the rest of the way. I mean, it took years to really build up to three miles, and then I would try to run 3 miles. You know maybe a couple times a week. I would say it was at least three years before I even started training for the half marathon and that was just a goal that I set when they told me, “You're not ever going to be able to do that.” I always wanted to let them know that I did, but I haven't wrote them back but... Yeah it it took a long time and then even when I was training, because I have heat sensitivity, I was always trying to be - trying to really pay attention to how hot it was outside. I run at like 5:00 in the morning because for me you know if it hits sometimes even 70 degrees feels too hot to me and I'm, like, overheating and feeling like I'm going to be sick. So it took a long of really trying to get my cardio back and my conditioning back to be able to get to that point of running half marathon. And now, I really just run to maintain, you know, my lifestyle. I'm not really training for anything, but I only run three days a week. But I just keep that up because I know that as soon as I stopped doing that, that my symptoms could come back. And when I first realized how important fitness was, I would be really fearful if I couldn't run. So like when it was hot in Arizona or if I got sick or something like just a normal cold, I was so scared that if I couldn't keep my fitness up I was going to lose it. Now I feel like I've really kept my conditioning so high that like if I took a week off or something I would be OK, but it felt like a medication in a way. Like if I don't run, it's like I wasn't getting my medication and I was just so scared I would go back to feeling so sick.

00:17:56 Jill: So it sounds like you have a lot of discipline to keep doing everything that you need to do and do you get slapped pretty hard if you stray from your routine.

00:18:08 Carly: I definitely have a lot of discipline and I think that's because when I first started realizing how important the fitness was I realized that if I wasn't doing it, I would feel pretty sick. And so I just, you know, when you haven't been feeling sick for so long, and all of a sudden your symptoms come back, it's like, “Whoa! I forgot how terrible this feels to just be like laying on the couch and not moving.” So, yeah, because of that I really stuck to my routine and now it's just such a normal part of my life. Other people, I think, look at me and think, “Wow, you're a little OCD,” but really, it's just because I'm trying to, you know, keep all of my symptoms under control.

00:18:50 Jill: Yeah, you know that's interesting because, as a nutritionist, now that I work with a lot of very sick patients, they have the best willpower of anyone I've ever worked with in my whole life. And sometimes I think that POTS patients tend to be high achievers. But then I also think there's this degree of just error when you're afraid to feel as lousy as you have felt in the past, that it just - all of a sudden any other considerations just go away. You don't care how it tastes, you don't care, you just want to feel good. And so I'm always impressed by how much discipline a lot of POTS patients seem to have. So can we do a speed round for oxygen starved brains? The POTSie speed round that's a little bit cruel, so no pressure to actually be speedy or accurate. First thing that comes to your head, what is your favorite way to get salt?

00:19:47 Carly: Just salt, I love to salt everything.

00:19:51 Jill: What drink do you find the most hydrating?

00:19:54 Carly: So now I would say water, but I'll say when I was really in the midst of my symptoms, I drank so much blue Gatorade.

00:20:02 Jill: Had to be blue?

00:20:03 Carly: It had to be blue.

00:20:05 Jill: I'm always surprised by how opinionated people are about what color their Gatorade needs to be. How many doctors do you think you have seen in your life for POTS?

00:20:15 Carly: You know, I heard you ask this question to someone else and they said hundreds which that was so many to me. I feel like my answer is probably 20, which feels like a lot to me, but it's nothing related to hundreds, but twenty was twenty too many for me.

00:20:32 Jill: How many other POTS patients have you ever met face to face?

00:20:36 Carly: I've never met another POTS patient in person.

00:20:40 Jill: What is one word that describes what it's like living with POTS?

00:20:45 Carly: I think invisible. Sometimes it feels like people can't really see what's really happening to you.

00:20:53 Jill: If we could draft 1 celebrity to be the spokesperson for POTS, who should it be?

00:20:58 Carly: I wish I knew a celebrity that had POTS. There probably is one - either they're not diagnosed or they don't want to share. But if, as my marketing background, if we were trying to reach millennials, you know, or someone in that culture, I would say someone like Selena Gomez who actually she has a chronic illness and she has recently talked about it, which became a huge thing allowing people to see what it's like to have a chronic illness.

00:21:24 Jill: What is something small that brings you comfort or joy?

00:21:29 Carly: This is something small, but any type of book brings me comfort or joy.

00:21:34 Jill: What is something that you're proud of?

00:21:36 Carly: Running that that half marathon is one of the things I'm most proud of.

00:21:41 Jill: If you could choose to have one superpower, what would it be?

00:21:45 Carly: Probably teleporting because my whole family lives in Wisconsin and I would love to just be there all the time whenever I could.

00:21:53 Jill: What is something that you'd give to every POTS patient if you had infinite funds?

00:21:59 Carly: Just health and just you know, feeling better and not being chained to their symptoms.

00:22:06 Jill: What is something that you're grateful for?

00:22:10 Carly: I think the ability to be active - when I think about other patients and how they're - they can't be or you know their symptoms debilitate them then I just feel so grateful that I can do that.

00:22:22 Jill: And finish this sentence: People might suspect I'm a POTSie when....

00:22:29 Carly: Well, I used to actually carry my own saltshaker everywhere I went, so I think that's my answer.

00:22:36 Jill: Great, OK, and that concludes the speed round just a couple more questions. What do you wish more people knew about POTS?

00:22:46 Carly: Yeah, I wish that more people even knew what POTS was because I can tell you I've gone to so many doctors, even my general doctor when they've given me advice that I've taken, and then my POTS symptoms have come back because the advice went against, you know, what my POTS doctor would say and I've had to be the person negotiating between: “Well, this is what the general doctor said.” “Well, don't listen to them.” You need to make sure you're making the right decisions, so I often ask the doctor, “Have you heard of POTS? Well, if you haven't, please go research it before you give me any advice.” So just that there was, you know, just more awareness of what it is and what it means for people who have it.

00:23:29 Jill: Is there anything you'd like to say to your fellow POTS patients who may be listening?

00:23:35 Carly: Yeah, I would say that even when it feels like the darkest times and your symptoms are the worst, it definitely gets better, and there are ways to feel better to cope with your symptoms. It took me many years to get to a place where I had my lifestyle back, but I did get it back after many years. And so that's definitely possible.

00:23:59 Jill: Yeah, I hear that from so many patients and that's so great to hear that a lot of people do think it gets better. So last question, why did you agree to let us share your story today?

00:24:13 Carly: Yeah, I just want to be a positive testimony as a POTS patient I think what's so interesting about POTS are the symptoms are all over the place. You can be in all sorts of different spectrum of the symptoms and sometimes they are really debilitating.: But for me, I feel like I'm an example of someone who has fully "recovered", but can control my symptoms and just want to encourage other POTS patients that that's possible and that you can do that.

00:24:44 Jill: That's fantastic. Carly, thank you so much for sharing your story and your insights and your example. We really appreciate you and all that you do for Standing Up to POTS. And hey, listeners, remember this is not medical advice. Consult your health care team about what's right for you, 'cause we're all so different, but thank you for tuning in. Remember, you're not alone and please join us again soon.

00:25:12 Announcer: You can find us wherever you get your podcasts or on our website, www.standinguptopots.org/podcast and I would add, if you have any ideas or topics you'd like to suggest, send them in. You can also engage with us on social media at the handle @standinguptopots. Thanks for listening and we hope you join us. This show is a production of Standing Up to POTS. © 2021 Standing Up to POTS. All rights reserved.