E158: POTS Diary with Mikayla from Ohio, a college student who loves to run

Episode 158 August 29, 2023 00:30:19
E158: POTS Diary with Mikayla from Ohio, a college student who loves to run
The POTScast
E158: POTS Diary with Mikayla from Ohio, a college student who loves to run

Aug 29 2023 | 00:30:19

/

Hosted By

Cathy Pederson Jill Brook

Show Notes

Mikayla was quite the athlete before POTS, and still enjoys running when she can. She was diagnosed with POTS within a month of symptom onset, and is grateful for good healthcare during this journey.

You can read the transcript for this episode here: https://tinyurl.com/potscast158

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

View Full Transcript

Episode Transcript

POTS Diary with Mikayla [00:00:00] Jill Brook: Hello, fellow POTS patients and most lovely people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Mikayla. Mikayla, thank you so much for being here today. [00:00:14] Mikayla: Thank you so much for having me. This is cool and it's very important to me. [00:00:17] Jill Brook: Oh good. Yay. Okay. Well maybe just give us like some super basics about us so that the audience can picture you. Like where are you, how old are you? [00:00:27] Mikayla: So I'm a 19 year old college student. I'll be a sophomore in the fall. I'm from Dayton, Ohio. [00:00:33] Jill Brook: Okay. And you still live in Dayton, Ohio? Yes. [00:00:37] Mikayla: I do, I go to the University of Dayton, so I live like five minutes from home and it is the best thing ever. [00:00:42] Jill Brook: Oh, so you can like do laundry at home and stuff. [00:00:45] Mikayla: Yep. Get food when I want it. It's awesome. [00:00:48] Jill Brook: That's the way to do it. Ok. So what do you enjoy doing? Or what are you passionate about? [00:00:54] Mikayla: I am very, very passionate about sports, so my entire life I've been an athlete. So after like high school and I stopped playing competitive sports, but I've gotten really into running and weightlifting since then, so that makes up most of my time. [00:01:09] Jill Brook: Awesome. Okay. And how would your friends or family describe your personality? [00:01:15] Mikayla: I would say that they would describe me as pretty shy at first, but once people get to know me, I'm a lot more outgoing and comfortable, and I would say that they describe me as funny, but I don't know if that's always true. [00:01:27] Jill Brook: Okay. If we force you to brag about yourself, what is something you're good at? [00:01:32] Mikayla: I would say something I'm good at is probably public speaking. I gave a TED Talk last year, so that's kind of my thing. [00:01:40] Jill Brook: Oh my gosh! What was it about? [00:01:41] Mikayla: I talked about, so basically like the event had like a central theme. So like the central theme was chant. So some people talked about like how we have chances in our lives to do certain things, like embrace the moment essentially. Some people have chances in their lives that are different than other people have chances. So like I kind of reflected on like privilege and how that impacts my life and it impacts the life of people around me. So yeah, it was a really fun and cool experience for sure. [00:02:08] Jill Brook: Wow, that's so neat. Okay, and so I know you have mentioned that you did have a life before POTS. Can you explain what that was like A bit. [00:02:18] Mikayla: So before I had POTS, like I said, I was a pretty outgoing athlete. I played soccer, volleyball, and basketball in high school, and I did a little bit of everything growing up. So, I was never like resting at all. I also four younger siblings, so my family is just like, go, go, go, go all the time. So there was no rest before I had POTS essentially. And having POTS made me kind of have to slow down a little bit. [00:02:45] Jill Brook: Okay, so super active, which, which sport was your favorite? [00:02:50] Mikayla: probably volleyball. [00:02:51] Jill Brook: Whenever I watch good volleyball players, I'm always amazed at how they just throw themselves at the ball, under the ball, on the ground. Is that hard to train yourself to do? Because it seems to me that would like some pain involved. How do you throw yourself like that so much? [00:03:11] Mikayla: Honestly, because I started playing volleyball when I was in like second or third grade, it was so young and like there just comes a point where you have to go full in. You can't just dive or something cause that's how you get hurt. But like, it's just normal. Have you seen like the spike ball games that like people play at, like graduation parties and stuff like that? I will play that at graduation parties and I will be diving on the ground like I did for volleyball. So it just, it comes a habit. [00:03:34] Jill Brook: Okay. So how long ago did POTS come to your life? [00:03:39] Mikayla: So POTS came to my life in like May-ish of 2022. I had COVID, I think in January, like on new Year's Day, so like January 1st. And I think that's what kind of set the POTS off. [00:03:55] Jill Brook: Okay, so what was your first sign of POTS? [00:03:59] Mikayla: So I would say the first thing I remember is I was at the gym and I still like, can picture this very, very vividly. I remember I was like sitting down at one of the benches because I couldn't do like more than a couple sets of like my workout without feeling like I was gonna pass out, like my heart was gonna beat outta my chest. And it was such a strange feeling because I've been such a like good shape and an athlete my whole life. So why am I so out of breath and disoriented after like 30 seconds of exercise? [00:04:28] Jill Brook: So it was just out of the blue. One day you're at the gym and it was like this. [00:04:34] Mikayla: Yeah. And so I noticed it once and I'm like, okay, maybe I'm just sick. Maybe I'm on my period. Maybe it's something else like not related to this, cuz I mean, I had heard of POTS maybe once before I was diagnosed. But I just never made that connection, so I was just like, oh, this is weird. But then it started occurring more frequently and that's when I kind of had some more concerns. [00:04:56] Jill Brook: Was your COVID Very severe? [00:04:58] Mikayla: No, so actually I had COVID for the second time, at least, I should say that we're like 99% sure that I had it. I didn't test because I didn't feel as sick as the first time I had COVID, so I didn't think I had COVID and then, It turns out like my entire family and like some friends that I was hanging out with got COVID. So pretty safe to say that I got COVID. But I mean, I felt sick for sure, but like it wasn't nearly as bad as the first time I had it. [00:05:24] Jill Brook: Okay. So what happened to your POTS from that day on at the gym? [00:05:30] Mikayla: It kind of developed more so I will say that since I was in the eighth grade. So since 2018, I've dealt with really severe headaches and migraines, and I've also had a lot of stomach issues. So I was just like, okay, maybe it's something connected to that. maybe I'm just getting really, really bad migraines. And so as it continued to develop and affect like more areas of my body, because again, at first it was just I was getting lightheaded, I was feeling out of breath. And then when it started messing with my head and my stomach more, that's when it became even more of a concern. But I didn't even realize how interconnected my head, my stomach, my POTS were until maybe like a week or two ago. So it's been interesting. [00:06:11] Jill Brook: When you say connected, you mean like when one is bad, the other is bad, or... [00:06:15] Mikayla: yeah. Or like, so for example, the past month, my POTS symptoms have been very, very bad. I, again, I'm a very big runner. I love running. And a month ago I ran in a half marathon, which is huge for me. And now I can't run. Thank you. I can't run more than 10 minutes without feeling like I'm gonna pass out or I need a nap. And since I'm noticing those symptoms flare up, I'm also noticing I'm getting more headaches or my stomach hurts more and more. So they're all very interconnected for me. [00:06:46] Jill Brook: I've always noticed that there's a certain kind of stomach ache that I get sometimes where I also feel it in my head, and it's my least favorite kind of stomach ache. But I'm always amazed like, wow, I would love to know what's going on there. Okay. So how long did it take for you to get a diagnosis? [00:07:04] Mikayla: So I was very, very lucky. I was able to get a diagnosis within a month. [00:07:11] Jill Brook: All right. We should like send a trophy to your medical team. [00:07:16] Mikayla: It was like, especially because I'm reading a book on POTS right now, and I've heard the fact that it takes an average of six years or something like that for patients with POTS to be diagnosed. And so I actually told my mom that the other day and she was kind of like astounded at that. But my primary care doctor is amazing. He has been like the one doctor who I can tell him that I'm in pain and he listens and he does something about it. And also like part of getting a diagnosis so quickly is that if there's something wrong, I'm gonna investigate it and figure out what's wrong. So I remember when I was maybe like in middle school and there was a friend that I used to play basketball with, I think, and someone said that she was having similar symptoms and she ended up having POTS. So me with my memory, I don't know how I remember that, but I was like, okay, maybe I should look into that. So I looked into that a little bit. Like this seems like it could really explain some of my symptoms, like this could be what's going on. So I brought that to my primary care doctor and he said, yeah, that makes sense. That does make a lot of sense. He actually, I know some POTS patients have a tilt table test, and he said, I don't wanna put you through that. I know it's not very pleasant, so we're not gonna put you through it. We're gonna put you on some medicine. See if that helps. And if that helps, we can basically assume that it's probably POTS. So, yeah. [00:08:40] Jill Brook: Wow. It's funny, I can't help but wonder how different my life would be if I had been diagnosed in a month instead of 17 years. [00:08:48] Mikayla: Yeah. [00:08:49] Jill Brook: That's amazing. [00:08:50] Mikayla: Yeah, I'm very lucky for that. And again, I'm very lucky that my primary care doctor is amazing. And also that my mom is super amazing. My two younger siblings have type one diabetes, so she is like an advocate for them. She listens very well and she'll fight to the death for us. So she's been amazing through this all. [00:09:10] Jill Brook: Oh, yay, mom. Okay, so once you figured out what you had, it sounds like you are a very proactive person. Have you found any things that really helped yet? [00:09:22] Mikayla: I would say definitely being medicated, that's helped me a lot. And also staying hydrated has been a lifesaver. I am the type of person that carries a 48 ounce water bottle with me everywhere I go. So making sure I'm getting a lot of electrolytes, whether it be from like Gatorade or Liquid IV, something like that. Just always making sure that I'm hydrated. Cause I know that if I'm hydrated, life is going to be a lot better for me. [00:09:48] Jill Brook: Now, did you say that you had run a half marathon a little while ago, but now you're back in a tougher place where you could not do that? [00:09:57] Mikayla: Yep, I did. So that's been, it's been hard. So this is actually the second half marathon I ran. I ran another one in September and I remember when I was training the one and then September, I kind of went through like a similar spell where maybe for like two weeks I couldn't run more than like a block without feeling like I was just not not good. You could tell that my POTS was flaring up. So that was hard, but I was able to get through it pretty quickly and resumed of my normal running. And now, ever since I ran the half marathon in May, I just have not been able to get back to a spot where I'm able to run, which has been hard. I mean, I love running more than anything, so when I can only run a mile and a half at the absolute most, it's been difficult for sure. [00:10:42] Jill Brook: Well, yeah, and I'm guessing part of it also is just you get so many endorphins from running and your brain is used to those, and then those come to a screeching halt. And I know I've been through that before and that does not feel good. Huh? [00:10:55] Mikayla: Yeah, I'm kind of learning that I need to pick and choose my battles. So again, I am very good at overexerting my body cuz I've been an athlete for so long. So I've learned that I probably shouldn't lift and then go try and run like within two hours and then try and go and stand for six hours at work. That's probably not the smartest idea. So it's. It's been hard, but it's also teaching me like how to slow down a little bit, make sure I'm resting and taking good care of my body because not only will that help with my POTS symptoms, but it'll also help me from like a recovery standpoint with my muscles and the rest of my body too. [00:11:33] Jill Brook: Smart. Yeah. So has POTS affected other areas of your life? Has it made your school situation different or your social life different? [00:11:41] Mikayla: I would say yes. So I'm, again, I'm a college student. I go to a pretty big party school, so a lot of my friends and a lot of the people around me drink a lot. And I've made the conscious choice not to drink because I know that that'll just make my symptoms a lot worse. And everyone's been very good about it. Like no one pressures me to drink or anything, but it's definitely hard when it's like, oh, my friends are going to this party and I wanna try and fit in and like just be a normal college student, and I'm just not drinking because I know that my body is already in pain 99.9% of the time. So why am I willingly going to make myself feel worse just to fit in more? Have fun. [00:12:27] Jill Brook: Okay, so this is actually funny because I'm a nutritionist. I talk to people a lot who, for various reasons are trying to drink less and they know in their mind logically, all the reasons not to. They plan not to. Their intentions are not to, but then they get to the party and then they do. And oftentimes that'll happen like 10 times in a row and they'll kind of struggle with this whole thing of once you get there, it's so much harder. So do you mind. It sounds like you don't struggle with that, or do you, do you, okay, here's my question. Two parts. Do you struggle with that? And do you use any strategies or what goes through your mind as everyone's handing out drinks or everyone else is drinking and you're not? [00:13:09] Mikayla: So I think that at first I kind of struggled with it because I think in my mind I was like, oh, once I get to college, I'm gonna party and do all this stuff, which I'm not that outgoing or wild. So that already was a lie. At first it was rough seeing all my friends kind of drink and just make friends by drinking essentially. But it really hasn't been that bad. And also like I have found ways to get around that. So like me, I don't go out to bars or to places that like the sole thing there is drinking. It's just not fun for me. And if I am at a party or somewhere where other people are drinking, I'll just hold my water, say I'm drinking water, or just, I don't wanna drink tonight. Like whatever. And nobody ever gives me any problems, which honestly that surprised me because I thought people would try and like, pressure me to drink, but nobody has. They're all super understanding, especially when I say cuz some people ask, they're like, oh, like, why don't you wanna drink? And I'm like just for health reasons. Like I feel a lot better. Like I just am not gonna drink and nobody asks about it. So it's not really been that as hard as I thought it would be. [00:14:17] Jill Brook: Oh good. Yeah. Right. Cause at the end of the day, is it like nobody cares, right? Like they offer it to you outta habit, but they don't actually care? [00:14:26] Mikayla: Nobody cares. [00:14:27] Jill Brook: Right. That's great. Do you feel at all like you are getting robbed at all of part of an experience of college or youth? I know one thing about my POTS is that it kind of came on so gradually and so slowly that by the time it was bad, I felt very lucky. Like, oh, I got a pretty normal college experience. I got to do traveling. I got to do some this and that, and I know that a lot of people it sets in younger. [00:14:57] Mikayla: Mm-hmm. [00:14:58] Jill Brook: Is there any feeling like that or do you feel like you're making it work and getting a pretty full experience? [00:15:04] Mikayla: I would say I feel like I'm making it work pretty well and getting a pretty good experience. But I will say this past month when I've been in like essentially what I would call like a flare up. I think that that's kind of been more like a little bit of grief, like grieving, like what I was doing a month ago. Because now I'll go shopping for an hour and I have to go and lay in bed for like an hour or two to like kind of rest and recharge. So it's just, it's been difficult this past month for sure, but I would say, And the year or so that I've had POTS, it's really not been too bad because I've been able to adapt and adjust and kind of make changes where I need to. So I'm not really losing out on a lot of things. [00:15:46] Jill Brook: Yeah, so I know that sometimes I have been in touch with people who work for big companies, and they have sometimes said that when they're recruiting new employees, they look for people with athletic backgrounds because they think that some of the same skills and traits involved with either being on a team or pushing, you know, to improve yourself physically apply to other parts of life. Do you feel like any of the strategies that you've used in athletics have paid off in other parts of life? [00:16:24] Mikayla: I [00:16:25] Jill Brook: especially dealing with POTS? [00:16:27] Mikayla: I think for sure, because a big part of sports is resiliency and having a battle through tough times. So like for example, in high school I had three ankle surgeries, so I was out for a long time and that taught me how to be resilient. And continuously work towards getting the back of my sports, even though I was struggling. So I think that can apply to any area of my life, especially with POTS too, like right now, like yeah, I'm in a hard time right now. Yeah, I'm not feeling good most of the time, but I know eventually I'll get to a point where I'm feeling good again, and it's just a cycle. So yeah, I definitely think athletics has taught me a lot and I'm so thankful that I've had so many great sporting experiences in my life. That have transferred over to other aspects of my life as well. [00:17:14] Jill Brook: Fantastic. So what is the best kind of support that people can give you nowadays? [00:17:19] Mikayla: I would say just trying to listen and understand. One thing that's been really rough is having to try and explain what POTS is to people, because I can never explain it well enough to make people like kind of get a good enough glimpse at what life is really like. So most of the time I just kind of water it down to, oh, I feel really lightheaded now. Like I need to sit down or my stomach hurts really badly. Like I just need to go sit in my bed, chew some gum, put my little nausea wristbands on. So I, I just feel like I water everything down a lot, which has been very hard. So I just need people to try and like, Listen, when I tell them. A good example of this, one of my really close friends she has Crohn's disease and I've been talking to her a lot and she is the one person that understands more than anyone else because she understands what it's like to kind of have life become abnormal after dealing with some chronic illness and getting back to that. And she's been the best. So, [00:18:22] Jill Brook: Oh, that's great. And I know what you mean by watering it down, because most people, they don't want a big, long explanation. They might give you five seconds to explain it. Right. So I've struggled with that too, and I've landed on much of the time, well, I don't faint anymore, but back when I'd faint, I'd usually just say, oh, I'm a fainter. I just need a minute. But I'd always thought that, wow, I am leaving out like 98% of it, but nobody wants to hear more than a one-liner. And so It's interesting to hear how you have kind of distilled it down to get it in. [00:18:57] Mikayla: and I feel like, personally, I feel like there's nothing that I can really say that is short enough to make people understand like the scope of what my POTS affects my daily life. Also I think personally, I know I have some like internalized stigma around POTS and like how it affects my life. And so I'm worried that if I tell other people they're gonna kind of be like, oh, that's not that bad. It's not that serious. You can still function pretty well, so you're not like, you're not struggling that much. So I try not to say much because I don't wanna have to deal with that. [00:19:32] Jill Brook: Mm. Interesting. You had mentioned at the beginning that you had given a TED talk about chances and how you had talked about privilege and how that might have affected your life. Do you feel like that has affected anything around your POTS, your treatment, where you're at now? [00:19:50] Mikayla: I definitely think so. And I can't explain it very well, but I think it definitely has. And I would say too, there's a lot of internalized stigma that I hold. And I remember in one of my classes we were talking about racism, sexism, we talked about ableism one time. So like we were talking about ableism and I was explaining my POTS and like, How that impacts my life. And like even talking about it, I feel like the people in the classroom are kind of like, oh this, like this isn't that serious. Because they don't understand like everything about it. So my perspective has definitely changed a lot. [00:20:27] Jill Brook: Yeah, but that's interesting. Where do you think that internalized stigma comes from? [00:20:33] Mikayla: honestly. I think it's because so much of talk around disability is focused on visible disabilities and illnesses. So when it comes to something that's invisible like POTS, you can look at me and I look like a perfectly healthy 19 year old girl. So I think growing up and always kind of seeing like disabilities being portrayed as visible has kind of led me to some internalization of just like, well, it's not that bad. Like kind of downplaying it. [00:21:06] Jill Brook: Yeah. Interesting. So do you feel like this whole experience has changed your worldview at all or changed you as a person? [00:21:15] Mikayla: I think so, because kind of playing off that. Now I know people are fighting battles you don't know about. In college, I met the first person ever, like personally who had POTS. Like someone came up to me and was like, oh, I see that you follow this POTS page on Instagram. Like, I follow them too. Do you have POTS? And I was so excited when this person came up to me. Cause I'm like, oh my God. You understand? You understand. And I mean, I had not talked to this person for more than like five minutes before, but I had like a 10 minute conversation with them about it, and I felt like so much more seen by them and seen by people I felt like. [00:21:54] Jill Brook: Yeah, it is amazing how good it feels to meet somebody else who's sort of in the club that nobody would choose to join. How many people have you met now who have POTS? [00:22:05] Mikayla: Just one. She's been the only one so far. So it's definitely, cuz I remember like shortly before that I was like, I wonder how many people on this campus have POTS that I don't know about. Or even how many people have POTS like symptoms on this campus that are not diagnosed, that I don't know about. So being able to meet someone like that was just very, very cool. And it has inspired me to talk about POTS more and like kind of show more awareness because I want people with POTS I may not know about it to feel like they can talk about it and discuss it openly. And not even just POTS, people with other especially invisible illnesses as well, like, They can talk about it. It's a safe space. I'm all about creating safe spaces, and that's part of the reason I gave my Ted talk because I wanted to give people a safe space to talk about very uncomfortable topics. And again, I think that discussion surrounding illnesses and disabilities is very important and it's very, it's very ignored in most mainstream contexts. [00:23:07] Jill Brook: Yeah. And at this point, do you assume that almost everybody has something that they're struggling with, and do you ever wonder what that percentage is? [00:23:17] Mikayla: I'm very curious because again, like seeing that the average POTS diagnosis time is six years. I'm so curious because I know that personally, like there are things that I'm struggling with now that are part of my POTS, like I couldn't imagine not having an explanation, so to say, for those symptoms. I would lose my mind. Like it just is wild to me. So, yeah. [00:23:43] Jill Brook: So are you up for a speed round where you just say the first thing that comes to your mind? [00:23:48] Mikayla: yes. Obviously. That'd be awesome. [00:23:50] Jill Brook: What's your favorite way to get salt? [00:23:53] Mikayla: Ooh, liquid IV [00:23:54] Jill Brook: What's the drink you find the most hydrating? [00:23:58] Mikayla: water with liquid IV in it. [00:23:59] Jill Brook: What's your favorite time of the day and why? [00:24:02] Mikayla: I would say it used to be the night, but it's now the morning because the morning is when I usually feel the best. [00:24:08] Jill Brook: Where is your favorite place to spend time? [00:24:11] Mikayla: My bed or outside running. [00:24:14] Jill Brook: What position did you play in soccer? [00:24:16] Mikayla: I was a goalie in soccer. [00:24:18] Jill Brook: Oh, did you get hit hard by the ball many times. [00:24:22] Mikayla: No, not that bad. But I remember I was a goalie because I hated running, and now I like run for fun. So it doesn't make sense in my mind. [00:24:30] Jill Brook: What is one word that describes what it's like living with chronic illness? [00:24:35] Mikayla: Frustrating. [00:24:36] Jill Brook: What's one word that describes what it's like meeting someone else with your same chronic illness? [00:24:42] Mikayla: Exciting. [00:24:44] Jill Brook: What is some good advice you try to live by? [00:24:46] Mikayla: Ooh. I would say it's not necessarily advice, as much as it's like a quote, So there's a quote from one of my favorite songs and it's she knows she lived through it to get to this moment. So that motivates me because it's like I know that looking back at my life and all the struggles that I've gone through, there's always been some reward that makes up for it. So that is a quote, and it's just something that I like to live by. [00:25:10] Jill Brook: Yeah. What is something small or inexpensive that brings you comfort or joy? [00:25:16] Mikayla: Ooh, my mom's cooking. That's priceless. But it's the best. [00:25:21] Jill Brook: Oh, nice. Who is someone you admire? [00:25:25] Mikayla: I admire people who can speak out about things, especially difficult things without like any fear, like people who are just like totally confident in what they say and do. [00:25:36] Jill Brook: Yeah. What is something that you're proud of? [00:25:39] Mikayla: I am proud of overcoming and doing hard things, [00:25:44] Jill Brook: What is the toughest thing about POTS? [00:25:47] Mikayla: not finding very many people that understand and not always having answers for your pain. [00:25:53] Jill Brook: What is an activity you can enjoy even when you're POTSie? [00:25:57] Mikayla: Ooh. I would say talking with my friends or hanging out with my friends, cuz then I can usually like rest and do something just like I can control what I'm putting my body through, but still be surrounded by people who bring me great joy. [00:26:12] Jill Brook: What helps you sleep? [00:26:15] Mikayla: Having like four pillows propped me up at like a 90 degree angle, [00:26:19] Jill Brook: What gives you energy? [00:26:21] Mikayla: being around people who make me happy or have energy to because I feed off them. [00:26:27] Jill Brook: What is something you are grateful for? [00:26:29] Mikayla: I'm grateful for having supportive family members and friends who are always there to listen to me and just be there. They show up. [00:26:42] Jill Brook: Have you ever had to sit down or lie down in a weird place because of POTS, and if so, where was the weirdest? [00:26:50] Mikayla: So I actually just got back from Washington DC today and I was at Arlington national Cemetery, and I had to lean up on one of the like fences, not by the actual graves, like something just holding like the gardens up. But I was like kind of sitting back on it while everyone else was standing around me. I'm like, this probably looks so like disrespectful, but like, I'm not meaning it to be that way at all. [00:27:13] Jill Brook: Yeah. Yeah. I just have a couple more questions. Is there anything you'd like to say to your fellow POTS patients out there? [00:27:23] Mikayla: I would say keep advocating for yourself and keep advocating for those around you because I know again, some people have diagnosis and some don't. So advocate for yourself. Advocate for your pain, and find people, find doctors and physicians who will believe in your pain and work to help you get better. [00:27:45] Jill Brook: And last question. In your darkest, most difficult POTS moment or day, what do you wish you would have known or would've heard from someone else with POTS? [00:27:58] Mikayla: oh, that's a good question. [00:28:00] Jill Brook: Because there's probably somebody out there right now having that moment, so that's why I ask. [00:28:06] Mikayla: I would say that this is another I'm, I love listening to music and there's another lyric that I love and it's the sun will rise and we will try again. So, You may be struggling a lot right now, but tomorrow, whatever that tomorrow's gonna be, and maybe it's literally tomorrow, but maybe it's a week, maybe it's a month from now. It'll get better eventually, even if it's only by a little bit. It'll get better and to some capacity. Okay. [00:28:32] Jill Brook: Great. Well, Mikayla, thank you so much for sharing your story and your insights and your strength with us. We really appreciate it and I know that everybody listening is wishing you all the best going forward. [00:28:45] Mikayla: Thank you so much for having me. This is very, very cool to me, and it just, it feels nice to talk about things that don't often get talked about. [00:28:55] Jill Brook: Yeah, right on. Well, you did it so nicely. So hey listeners, that's all for today. We'll be back again next week, but until then, thank you for listening. Remember, you're not alone, and please join us again soon.

Other Episodes

Episode 181

December 19, 2023 00:41:19
Episode Cover

E181: Venous Insufficiency in POTS with Dr. Alexis Cutchins

Dr. Alexis Cutchins wrote a comprehensive review of POTS, including less-known treatments like oral contraceptives, gluten-free diets, and diosmin. Join her in thinking about...

Listen

Episode 78

August 06, 2022 00:38:25
Episode Cover

E78: Claire from Australia

Claire developed POTS after a back injury. Work as a paramedic was triggering, and she found that she had to dig herself out of...

Listen

Episode 174

November 14, 2023 00:31:44
Episode Cover

E174: Building Resilience with Dr. Katie Gorman Ezell and her student Katie

Resilience is a nuanced topic. How do you build it? Is it always a compliment if someone says you are resilient? How can we...

Listen