E166: POTS Diary with Lauren, a tennis player who developed POTS with Long COVID

Episode 166 October 07, 2023 00:29:47
E166: POTS Diary with Lauren, a tennis player who developed POTS with Long COVID
The POTScast
E166: POTS Diary with Lauren, a tennis player who developed POTS with Long COVID

Oct 07 2023 | 00:29:47

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Hosted By

Cathy Pederson Jill Brook

Show Notes

Lauren was a college tennis player and was always on the run when she developed COVID, Long COVID and POTS. At 23, her life is different now, and she continues to search for her new normal.

You can read the transcript for this episode here: https://tinyurl.com/potscast166

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Episode Transcript

POTS Diary with Lauren [00:00:00] Jill Brook: Hello fellow POTS patients and super people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Lauren. Lauren, thank you so much for joining us today. [00:00:13] Lauren: Thank you for having me. Hi. It's good to be here. [00:00:16] Jill Brook: So, okay, so where are you? How old are you? Give us a few basics on your baseball card. [00:00:22] Lauren: Yeah, so my basics my name is Lauren. You know that I live in Minneapolis, Minnesota. I am 23 years old and I love being outside. [00:00:33] Jill Brook: So, I feel like I should know more about Minneapolis, but I don't. What is the claim to fame in Minneapolis? [00:00:40] Lauren: Oh, what isn't the claim to fame? I feel like you could find any claim to fame. I'll say I love the city. It's culturally diverse there. I'm a foodie and there's so many food options to try. A lot of good art to see, a lot of a lot of history and a lot of culture overall. [00:00:57] Jill Brook: Very cool. Okay, so what do you enjoy doing there in Minneapolis? [00:01:01] Lauren: I like to read a lot. I will say you don't have to be in Minneapolis obviously to do that, but I like to read, I like to get outside when I can land at 10,000 Lakes, Minnesota is so, I like to get out to a lake or a beach if I can do that. And just enjoy the weather. People say that they don't like the winter and they live in Minnesota, but I love the winter because there's just a new season every couple months, and winter only lasts a couple months then too. So I, I like it all. [00:01:30] Jill Brook: What are your favorite things to read? [00:01:32] Lauren: I am recently reading a book called The Song of Achilles, and my sister recommended it to me. Actually. It's a book kind of about Greek mythology, but from like a nontraditional viewpoint, and I love it. But in general, I'll read almost anything. I'll read romance, fiction, non-fiction. One of the books before this I actually read was Killing Jesus by Bill O'Reilly, and that was a fascinating read. So I switch it up. It kind of just depends on whatever is on my shelf at the moment. [00:02:05] Jill Brook: Yeah. Sounds like you are super diverse. That's awesome. Okay, so how would your friends or family describe your personality? [00:02:12] Lauren: I think that they would describe me as lighthearted. A little spunky. I'd hope that they would say that I'm a feminist cuz I totally am. And but also calm and level-headed for sure. [00:02:24] Jill Brook: And if we force you to brag about yourself for a minute, what are you good at? [00:02:29] Lauren: I am good at being a cheerleader, I can totally cheer someone on. I can stay levelheaded. I feel like that's one of my strengths is being the calm in the storm. [00:02:42] Jill Brook: Oh, that sounds like a good skill to have with this whole world of POTS. Did you have a life before POTS? [00:02:51] Lauren: I did. So my POTS story has been a little unique. I kind of developed it from a case of long COVID that I had, but basically I was fully healthy until about like 2020 and things kind of hit the fan. I got COVID. Since then I had been experiencing long COVID and then arguably I think a, a little bit of POTS as well. And then earlier this year is, is when it got really bad and that's when I Finally was digging into a lot more research and came across this diagnosis, and I believe it was in March or April that I was officially diagnosed with POTS and it felt more like a weight off my shoulders than anything else. [00:03:37] Jill Brook: Yeah. Okay, so let's back up a second and can you give us a snapshot of your life in the year before you got long COVID. [00:03:46] Lauren: Yeah, I mean, I was going to school at the University of Wisconsin Lacrosse. I was a D three athlete. I played tennis. So I was very active you know, practice almost every day, lifting frequently, going out with friends, kind of having a. college experience, and working a lot too. I was a very hard worker. I loved the money, even though I was not making a lot of money. I was working at like a Dunkin Donuts. But I just, I was very committed to kind of being a hard worker, but also having some balance and then COVID hit and brought on throughout the years that I've had it just a slew of symptoms. So that's, that's been a little challenging. [00:04:27] Jill Brook: Ah, I'm sorry to hear that. So tell us about your symptoms. Was POTS the only thing you got with long COVID or did you get a bunch of other stuff too? [00:04:36] Lauren: So originally the very first symptom that I had was extreme joint pain in my knees, and that was something that was very new and very weird because as a tennis player and as someone who worked at a job who was always under her feet and kind of always moving around, it was very new to me and obviously very painful. So I ended up actually having to cut down my hours at my job and kind of make some life adjustments because of the symptom, that symptom in particular that I was experiencing. And then, you know, kind of more symptoms resulted after that. Some chronic fatigue, headaches for sure. And a little bit of anxiety, just kind of about all the symptoms and because no one was ever able to find anything that was wrong with me. And then kind of this year when things went downhill a little bit in terms of my physical health, you know, all the POTS symptoms of headache and I have never passed out, but that presyncope feeling of feeling like you're gonna pass out and the nausea, the headaches, heart pains as well. Some muscle spasms I've had. So kind of a more symptoms I'd say as I've, as I've had the diagnoses longer. [00:05:50] Jill Brook: And what was your COVID like? Was it severe? And did you get long COVID right after COVID or was there a delay? [00:05:58] Lauren: My case was, Unique in the sense that I actually only went to get a COVID test because I was planning on seeing my family that weekend. I think it was a Wednesday or a Thursday that I went and gotten a test. It was a rapid one, and Friday morning I got a test result back and it was positive and I was a little surprised. I will say I was feeling a little bit off that week, but I had kind of attributed it to, you know, not getting the best sleep throughout the week and just kind of having it being a weird. You know, weird a couple of days where I just needed to kind of get back into gear, and so that was when I tested positive. And so obviously I didn't go out, I quarantined and my case was Pretty easy. I think I was maybe still doing physical activity, which I know they say not to do, but me being the overachiever that I am and that I definitely was at the time was, you know, probably going and doing some workouts and whatnot. And then at the very end of my quarantine period, this was like day 12 or 13, I was just fatigued and I could not get outta bed for a couple days. So that was definitely weird and that was kind of the standard COVID case and I was like, okay, this is COVID for sure. But that only lasted for a couple days and then I was feeling better. And then oh, I'd say two to three months after is when I started feeling the symptoms. And that's kind of when my Ill health journey began. [00:07:24] Jill Brook: And at that point, did you know what long COVID was? Did you recognize it or what was your diagnostic journey like? [00:07:33] Lauren: Of course I told my mom, because she is, you know, been a very key person in my health journey as well, and she of course turned to Google to diagnose my symptoms. I mean, we went to doctors and tried to figure it out, but with the joint pain, nobody could figure out what was wrong. They did all types of scans, blood draws. They asked if I had any rashes. They always looked at my knees, nothing they could ever find that was wrong. And I don't even think a doctor officially diagnosed me with long COVID until probably this year is when a doctor said it. I mean, I always kind of brought forth that information to a provider, but whether they believe me or not, I think that evolved with the term long COVID and you know, when more people started experiencing these mysterious symptoms is when there was more merit to the name long COVID. So it was definitely a while before there was any, any association with kind of like a long COVID that it was. [00:08:32] Jill Brook: Yeah. And so I know that a lot of us hope that having an actual diagnosis and a name for our problem is gonna bring solutions. So once you knew you had POTS and long COVID, did that help find any effective treatments? [00:08:45] Lauren: It did. It did. I've done, you know, a ton of research definitely since being diagnosed with POTS but with long COVID in general. Done a ton of research. I will say I sometimes get scared of doing research just because every test result that comes back a little abnormal. I try and do my own research. And so that causes a little bit of, you know, uneasiness because there's always 10 other things that it could be. So I try to stay with A few sources, a few reliable sources that I've found. But I will also say that I've turned to YouTube and there is a huge YouTube community of people with POTS and people with, you know, other forms of chronic illness that have healed. And so that's kind of been a lifeline for me is, is hearing the stories of other survivors, of other people that have gotten through long COVID and just chronic fatigue and other chronic illnesses in general. And that's definitely provided me a lot of hope for my journey. [00:09:39] Jill Brook: Are there any specific things that you feel have helped you the most? [00:09:43] Lauren: Yes, I have recently started acupuncture and I will say that one of the only doctors that I sometimes leave feeling worse, and I feel like they did their job, which I know sounds weird and a little crazy, but that has definitely helped and it's kind of a form of medicine that tries to balance out your energy and your, your chi more specifically. And so that has helped a lot. I've been meditating a ton recently and so that's been hugely beneficial in kind of restoring my calmness and restoring kind of my center. So, I would say diet has helped a lot the past couple weeks. I've focused a ton on my diet and trying to eat, you know, an anti-inflammatory diet and more so one that's whole foods based and less processed foods. And that has helped me feel good in trying to restore my gut health. So those are kind of a key overview of things. And I think this goes without saying that pacing is kind of the undertone to all of this is pacing your symptoms your physical, mental, spiritual health, all that. So those have all been really big for me. [00:10:46] Jill Brook: So what does your lifestyle look like now? Are you still in school? Are you still working? What happened to tennis? [00:10:54] Lauren: Yeah, so unfortunately tennis was not something that I could consistently do while experiencing long COVID. So my senior year, I actually took a step back and I kind of acted as manager, coach a little bit for my teammates because I wasn't able to perform at the level that I wanted to perform at. And it was a mutual decision with my coach as well. He respected my decision to let me kind of step down because I couldn't perform. And so I will say right now it's not, it's not the best of times. I'm in between jobs right now. I had a full-time job when I graduated college last year. But for a number of reasons, I left that position and I am currently looking for a new job right now. My health is fairly unstable. I think a lot of people with POTS know that your future is uncertain and it takes a lot longer than what you think it does to find your, find your balance and to find your new normal. So that's kind of my period is what I'm calling it, is finding my new normal right now. [00:12:01] Jill Brook: Yeah. How do you feel about all that? I mean, do you know other people? Were there other people at your university who had similar things happen? It sounds sad. How are you doing? [00:12:14] Lauren: I mean, I definitely try and stay positive. You know, I do realize that I'm not where I wanna be at in my life right now, but I know that there is another side to it, and that's what I am holding my belief in. And that's something that's given me hope throughout the journey, is just my ability to stay levelheaded and to stay positive throughout the process, because I know that I will improve. It's just a matter of time. And so holding onto the belief that I will get better is enormously more powerful than I think any other piece of advice that I could give during this podcast is, you have to believe that you'll get better, and that's something that I'm holding onto. So that has helped me a ton. And then I will say, I've connected with people on Facebook and made some friends in the POTS community, and surprisingly one good friend that I made at college that Also is in Minnesota. I was hanging out with her one day and I was kind of telling her that, you know, I was recently diagnosed with POTS and I was explaining a little bit about what it was, and she brought forth that she had been living with POTS since she was a child. And I was flabbergasted because I'd known her for a couple years in college and just never known that about her. And so that was kind of bittersweet in the sense that I could see that she was living her life in a way that I wanted to, but she also had POTS. So that, that's been good, is having a closer friend that knows exactly what I'm dealing with, that is at a place that I wanna be at. So that's helped me a lot too. [00:13:45] Jill Brook: For sure, and you're reminding me that it was estimated that one out of every 100 teens in America had POTS even before COVID, and I'm sure it's higher now. And so probably almost everybody knows someone even if they don't know they do. And so that is interesting. What's the best kind of support that people can give you now? [00:14:06] Lauren: I would say one of the best kinds of support that people can give me is letting me talk about my journey on my own terms. I think it can be a little, not insulting, but I think it's a little off putting when people try and talk about you in terms of your diagnosis and in terms of kind of where you're at health wise, because there's so much more to life than that. And so one thing that I think is huge is to let people talk about their diagnosis when they want to and where they want to. It should not necessarily be brought up every single time you see someone you know like, how are you doing? How's your POTS doing? Because there's so much more to people than one diagnosis that they have received in their life. [00:14:51] Jill Brook: Have you found that it's challenging to find the right amount to talk about it? Because I still struggle with this now and I've had POTS for 30 years, but I kind of find that when I get away from talking about it, then people forget about it and then I feel like maybe I start to feel maybe a little bit judged for not doing as much as other people. And there's a part of me that feels like, well, if I talk about it too much, I don't wanna be a complainer, but if I don't talk about it enough, then people forget and they think that I should be doing more. And it's just such a hard balance. Do you ever struggle with that? [00:15:27] Lauren: Yes, you probably took the words outta my mouth when saying that in the sense that, you know, obviously it's a huge part of our lives, this diagnosis and living with it and navigating the world knowing that you'll have this. But you also don't wanna make it your entire life because there is a lot more to life than living with POTS. But yeah, I would just echo what you said, that it's a fine line of, you know, you wanna talk about it because it is a part of your life and it's a huge factor in your life, but you also don't want to make every conversation that you have with someone about your illness. And so, yeah, I am finding that balance every single day. It's in the sense of, I wanna be a normal 23 year old, but I, I am inherently a little abnormal, so I have to navigate that. [00:16:15] Jill Brook: So what activities do you enjoy now? Has anything replaced tennis? [00:16:22] Lauren: Yes. So I do envision that I will get back to tennis at some point because I know my health will get better. So I will say tennis is just, is, is on a pause right now. What I like to do, I've been getting a little bit into Pilates to kind of build my strength back up. That's been a slow process, but I like Pilates. I feel like I've always been someone who likes to read. I'll say like in middle school and in high school, I was that kid who was staying up till like nine 10 at night reading a good book because I just loved it so much. So I mean, reading has always been huge for me and I have recently taken up hand sewing because I think it's such a unique thing to say that you can hand sew. So that's something that's kind of been a new addition into my life in the last couple weeks. [00:17:06] Jill Brook: Neat. Okay. Can you talk to us more about that? What do you mean hand sewing? Like what do you sew? [00:17:11] Lauren: I laugh because I have really only sewed like holes that have been in a sweater, like a pair of pants or something like that. Because I think it's just so handy to be able to do that. In the last couple weeks, I've come across more clothes than I came to realize I had that had like one hole or one little rip that just needed to be fixed, and it's so convenient just to be able to sew it up. So that's kind of been my starting point. It's really just like sewing things that have problems with them, but I want to take on the project of sewing a skirt, and I am like a third of the way there. I, I got an old dress and so I took like the satin layer that was on the top and I am intending to add a waistband to it and to maybe hem it a little bit, but I need a iron to kind of iron it out. So that's been the next thing that I need to get is my roommate has an iron and I need to like, set it up and Google how to use it because I've never used an iron before. But yeah, that's kind of my next big project is I wanna make like a skirt and I kind of want to get into making garments. I think that would be super cool, but totally a down the line sort of thing. [00:18:23] Jill Brook: Neat. Yes. That's so cool. Okay, so has POTS had any silver linings at all? [00:18:33] Lauren: I really, really, really, really am trying to believe that POTS is my super strength and not my achilles heel, in the sense that it has humbled me. It's made me truly see the beauty in the small things. I feel like before I was diagnosed with POTS, I definitely had these characteristics, but I feel like on a much more different scale now, I appreciate the little things in life. I appreciate the friendships that I have, my family, and It's made me appreciate that life just is always a curve ball and you never know what's gonna happen. And so I'm trying to take that as a positive thing. So that's my silver lining to POTS. [00:19:16] Jill Brook: So this is kind of related and you sort of addressed it, but do you think it's changed your personality? [00:19:22] Lauren: Yes, I would say I am much more empathetic for people and I try not to like feel weird about saying this, but definitely people with disabilities, you know, I feel like I was very humble and my education is in public health and so I feel like that has given me a well-rounded sense of, you know, social issues in the world. And I feel like more so now than ever, it's kind of like any invisible illness, one that you can't see, like mental illness is huge. You can't see that and just. that you do not know someone until you've walked a mile in their shoes. So I feel like it's, it's made me more empathetic just in the sense that everyone has got their own journey. And to follow up on that made me realize even more that the grass is not always greener on the other side, in the sense that just because you see that someone else has a life that you think you wanna live, doesn't mean you know everything about them or their life. [00:20:20] Jill Brook: Yeah, for sure. Wow. Okay, so you were studying public health, and so do you have hope that public health will do something for the long COVID community here soon? [00:20:31] Lauren: You know, I'll bring it back to my origins, like, yeah, you just have to have hope. You know, hope in getting better in my own personal journey. Hope that the world will become more emphatic. Whether that will turn into reality, I don't know. But I do have hope that the social norms around it will change and that there will be more medical breakthroughs, but it's a battle. You gotta be an advocate for yourself and for the diagnosis overall. So it's a battle. That's what I'll say. [00:21:00] Jill Brook: Yeah. Is there anything that you know now about living with POTS that you wish you had known sooner? [00:21:07] Lauren: That salt and water make a heck of a difference. I feel like that's been such a small change that has helped me immensely the last few months. And so it's something that I definitely had to learn the hard way, but that's definitely been a huge help. And just knowing that you gotta take life at your own pace and that your body is gonna change and gonna adapt and you gotta learn with it. You gotta learn with it. [00:21:32] Jill Brook: Okay, so this next question is a two-part question, and the first part is not that uplifting, but you'll see why in a second. Can I ask, did you have like a rock bottom moment? [00:21:47] Lauren: I don't mean to laugh because that's, you know, that's not an inherently funny question. I would say there wasn't one moment where I was necessarily at rock bottom. I guess, well, if I had to say there was one moment, it was kind of a culmination of things that had happened. I don't even think I had been diagnosed with POTS yet, but it was a moment where, you know, I was frustrated with my health. I had frustrations with my job and with my living situation. And this was again, right around like March or April. And so there was one moment where I was talking with my sister and I just broke down and I was crying and I just realized that I knew I had to make some big changes in my life to to see big changes. So I would say that that's my rock bottom, just because it made me realize that I needed to do something different. But yeah, I would say it's been a little, it's been a little rocky since then. It hasn't been a straight path forward as I think everyone with POTS kind of would maybe understand. [00:22:46] Jill Brook: The reason I ask is that we get a lot of messages from people saying that they like listening to this podcast when their POTS is not going so great, and they like hearing from people that they also had a really tough moment and that they basically survived it and did okay afterwards. And so, I guess, what would that version of you, in that toughest moment, what would've given you more hope or positivity in that moment? Like if you could talk to yourself in that moment, is there anything that you'd say? [00:23:23] Lauren: Yeah, not to be super cheesy or you know, super stereotypical, but I would just tell myself that it gets better and that probably one I would first say to take a deep breath because I know in that moment that I was for sure crying and just very emotional. Which I'm not super emotional person. Like I do feel my emotions, but inherently I'm very logical. But I would just tell myself like, it gets better. There's a whole community, there's a whole world that you can live, you know? And while you might have to put a pause on the things that you wanna do right now, it doesn't mean that it's a forever, no, it just means you know, it's not a goodbye, it's a see you later. So I would tell myself that, that it gets better and that you can connect with people in so many other ways. So that's what I would tell myself. [00:24:11] Jill Brook: Awesome. Are you up for a speed round where you just say the first thing that comes to mind? [00:24:16] Lauren: Yes, I love it. [00:24:18] Jill Brook: Awesome. Okay. What's your favorite way to get salt? [00:24:21] Lauren: Oh gosh. This is probably really gross, but like coarse sea salt, like just the chunks of sea salt. [00:24:27] Jill Brook: Hmm. What is the drink you find the most hydrating? [00:24:31] Lauren: Ooh, this might sound lame, but water. [00:24:33] Jill Brook: What is your favorite time of day and why? [00:24:37] Lauren: I would say late morning to mid-afternoon because my body's a little more regulated at that time. [00:24:47] Jill Brook: Where is your favorite place to spend time? [00:24:50] Lauren: outside, like anywhere outside really. By the water, maybe. [00:24:55] Jill Brook: How many doctors have you seen for POTS? [00:24:58] Lauren: For POTS less than five. I don't know if that's acceptable, but I'll say that [00:25:03] Jill Brook: How many for what turned out to be long COVID? [00:25:06] Lauren: it feels like 30 probably. [00:25:09] Jill Brook: How many other POTS patients have you ever met face-to-face? [00:25:13] Lauren: One face-to-face [00:25:15] Jill Brook: What is one word that describes what it's like living with a chronic illness? [00:25:20] Lauren: rollercoaster [00:25:22] Jill Brook: What is some good advice you try to keep in mind? [00:25:25] Lauren: it'll get better. [00:25:27] Jill Brook: What is something small or inexpensive that brings you comfort or joy? [00:25:32] Lauren: A just amazingly home cooked meal. Doesn't have to be super expensive. Just like something that tastes really yummy. And that's obviously subjective because it's different for everyone else, but that's something so comforting to me, is just something really tasty. [00:25:46] Jill Brook: Who is someone you admire? [00:25:49] Lauren: Oh I don't know. What do you mean by like admire someone that I like look up to? [00:25:53] Jill Brook: Yeah. [00:25:55] Lauren: I would say my old professor, Dr. Gilmore. [00:25:58] Jill Brook: Why? [00:25:59] Lauren: he inspired me to no end. And let me see that the world is full of possibilities. [00:26:05] Jill Brook: Oh, nice. What is something you're proud of? [00:26:08] Lauren: my ability to stay positive. [00:26:12] Jill Brook: What is the toughest thing about POTS? [00:26:15] Lauren: The feeling that you just know your blood is not regulating itself. Like you just know it's your blood not getting everywhere. So frustrating. [00:26:23] Jill Brook: Do you have any tricks to fall asleep? [00:26:26] Lauren: It's not really a trick, but just keeping a consistent routine is huge. [00:26:30] Jill Brook: Do you have any tricks to get energy when you need it? [00:26:33] Lauren: No, I'll just put it shortly. No. [00:26:36] Jill Brook: What is a gift that you would have sent to every POTS patient in the whole world if you had infinite funds? [00:26:42] Lauren: Ooh. If I had infinite funds, just any electrolyte drink of their choosing. That's one thing that has helped me a lot is an electrolyte drink. So if I could buy electrolytes like Gatorades or Powerades for everyone in the POTS community, I would. [00:26:58] Jill Brook: Nice. What is something you are grateful for? [00:27:01] Lauren: The simple joys of life. [00:27:03] Jill Brook: Okay, I'm gonna ask you to finish a few sentences. I love it when... [00:27:08] Lauren: I can lay outside and read a good book. [00:27:12] Jill Brook: I hate it when... [00:27:14] Lauren: I run out of an ingredient, or I realize halfway through a recipe that I'm out of an ingredient that I thought I had. [00:27:22] Jill Brook: People might suspect I'm a POTSie when... [00:27:26] Lauren: I ask where their salt is. [00:27:29] Jill Brook: the weirdest place I've ever had to sit down or lie down because of POTS is... [00:27:34] Lauren: the bathroom of a concert. [00:27:36] Jill Brook: oh, that does not sound clean. [00:27:38] Lauren: Yeah, yeah, [00:27:40] Jill Brook: Been there. Yes. [00:27:41] Lauren: yeah. [00:27:42] Jill Brook: I just have a couple more questions. What do you wish more people knew about POTS? [00:27:49] Lauren: That it's an invisible illness, that I'm not broken, I'm just a little bit dysregulated right now. [00:27:56] Jill Brook: And is there anything you'd like to say to your fellow POTS patients out there? [00:28:02] Lauren: You're stronger than you know, and more resilient than you think you are. [00:28:05] Jill Brook: Oh, that's beautiful. We'll end it there. Well, Lauren, thank you so much for sharing your story with us. I know that we all appreciate it and we're all hoping you the best going forward. We can't wait till you're playing tennis and doing your favorite sport again. [00:28:21] Lauren: Thank you. I'm excited to be playing tennis again. Thank you for having me. [00:28:24] Jill Brook: Okay. And hey listeners, we hope you enjoyed today's conversation. 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.

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