POTS Diaries with Jolie from TN, a mental health advocate who loves to cook

Diaries with Jolie [00:00:00] Jill Brook: Hello fellow POTS patients and lovely people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries. We are speaking with Jolie. Jolie, thank you so much for joining us today. [00:00:13] Jolie: Hello. I'm so happy to be here with you. Thanks for inviting me. [00:00:16] Jill Brook: Well, we are excited to get to know you. So let's start with some basics. Give us your baseball card things. What's your age, where are you? Where'd you grow up? [00:00:25] Jolie: Yeah, absolutely. So I am 22 years old. I was born and raised in Nashville, Tennessee. Moved to Chattanooga, Tennessee back in 2019 for college. Since then I've graduated and I now work and have just stayed in Chattanooga ever since. [00:00:43] Jill Brook: Ooh. Now tell us about Chattanooga. [00:00:45] Jolie: Yeah, I mean, it's an awesome city. I think it's great because it's like the halfway point from Nashville to Atlanta. So you're about two hours from Nashville, an hour and 15 from Atlanta, an hour and 15 from Knoxville. It's great. It's like a little city. You still get the city feel. I always like to say the city feel without the city prices, and it's really cool because you can be in the city one minute and then drive 10 minutes later and you're in the mountains. So that's really cool. It's really fun. There's a bunch of things to do. There's a bunch of hiking, there's a lot of cool scenes in Chattanooga. We have, of course, the Tennessee River, so we'll go, you know, whitewater rafting, kayaking, paddle boarding is really popular here. So there's a lot of things outdoors that people can do, especially tourists, they'll come and enjoy. [00:01:32] Jill Brook: That sounds amazing. The tourist board should pay you for that, for [00:01:36] Jolie: Right. [00:01:37] Jill Brook: This sounds incredible. so tell us, what are you passionate about? [00:01:42] Jolie: Well, I would say I'm really passionate about mental health, just personally as someone who has really bad anxiety. Just using my platform to be an advocate to, you know, like it's okay to not be okay. It sounds very cliche, but it's the truth. And I think the more people who are just open about it, the more awareness it's gonna bring. And I'd say, yeah, that's my passion at the moment. [00:02:05] Jill Brook: Oh, that's fantastic. Okay. And what would your friends or family say is your personality? [00:02:11] Jolie: I think they would say that I am outgoing. Some people say I'm a little sassy. I don't know. But I would say I'm also like an introvert extrovert. My parents always say three days into a trip, I need to have my me time to recharge those batteries. But yeah, I'd say I love to meet new people. I love to talk. Try to be inclusive and friendly to anyone I meet. But yeah, I think my parents and friends would say I'm just a silly girl. [00:02:41] Jill Brook: Okay. And if we were gonna force you to brag about yourself, what are you good at? [00:02:46] Jolie: Oh gosh. I don't know. I would say I've recently gotten in the last like two years really good at cooking. It was not something I have been good at, but I had a roommate who really taught me how to cook. So I would say I cook almost every meal and it's fun. It's like my time to decompress and relax. I'll just pop on some Netflix or Hulu and I'll cook and it's fun. I like to make new things. [00:03:15] Jill Brook: Oh, neat. So what's the best meal you've ever cooked? [00:03:20] Jolie: So I would say the best thing that I have cooked so far is gonna have to be this really yummy ramen dish. And I have never made ramen myself. And I order this thing called every plate and it's super cool. It was a beef meatball ramen with green peppers, carrots, tomatoes, and it was so yummy. I'm a huge ramen girl and I was pretty proud of myself for making ramen for the first time at home. [00:03:52] Jill Brook: Awesome. I've never made homemade ramen, but it's funny because before I knew I had POTS, I kind of became a ramen addict, and I think [00:04:00] Jolie: Oh yeah. [00:04:01] Jill Brook: much salty water involved [00:04:04] Jolie: Right. [00:04:04] Jill Brook: Could not get enough of the salty water. [00:04:06] Jolie: Exactly. It's the best. It's the best way to get your salt intake. [00:04:11] Jill Brook: That's funny. So probably half our audience is now really hungry and half of our audience is now nauseous because [00:04:18] Jolie: right. [00:04:19] Jill Brook: massage. So anyway, sorry everybody. Okay. Can you give us a snapshot of what your life looked like maybe in your year leading up to when POTS hit, like, what were you doing? What did your life look like? [00:04:34] Jolie: Yeah, I would say that my whole life I was a pretty healthy person, super active. I cheered, played soccer, ran track. Did a bunch of that stuff in college. I was involved in something called Greek show, and that's like a whole dance competition. And that was something that I just absolutely enjoyed, loved doing. And now I just do not think I could do that now, which is a little sad. But I would definitely say I was able to be a lot more active before I had POTS. [00:05:13] Jill Brook: So what was your first sign that something was wrong? [00:05:16] Jolie: It was actually really funny because I think my whole process happened really quickly. my first symptom actually was I passed out in class in college, and that morning I kind of felt weird. Something kind of felt off and I called my mom and I was like, I really don't feel good. I was walking to campus and I was trying, you know, push through. My mom was like, get through this class. Call me afterwards, and I sat down in class and all of a sudden I got this. Now that I know it was tunnel vision, but I just could not see straight, and it was something I had never experienced in my life before. So I got up, just walked outta class, went into my college advisor's office because she and I had a really good relationship and I just looked at her and I was like, I don't feel good. And then I passed out and the next thing I know, EMTs are standing over me, wheeling me out of the college of business. And I was just like, what is happening right now? [00:06:23] Jill Brook: Yeah. Okay. And so did they figure it out fast or what did you think was going on at first? [00:06:29] Jolie: Yeah, so my mom, she's an anesthesiologist, so she immediately went to all of her friends and were asking like, these are her symptoms. What do you think's going on? I had no idea what was going on cuz I hadn't felt sick prior. I was like, maybe I have the flu. Maybe I have food poisoning, strep. I don't know. And then my mom was like, have you heard about pOTS and I was, I just said, I have no clue what that is. I don't know what that stands for. Are you talking about POTS and pans? And the more she did research, the more I did research. My mom was like, this sounds like what you might have. And we luckily found a really good cardiologist here in Chattanooga who was able to get me in within three weeks of my hospital visit and was able to help diagnose me and do that whole tilt table test to, you know, come to that conclusion that you in fact do have POTS. [00:07:36] Jill Brook: Wow. Yay, mom. I almost feel like she should get a trophy or [00:07:40] Jolie: Right, right. Crazy. [00:07:44] Jill Brook: Oh, okay, so you never had to go through the whole wondering if it was in your head, you didn't have to go through... [00:07:50] Jolie: yeah. I thankfully really didn't have to go through that With doctors. I think it was more of an internalization at first when you know, it's a process of elimination. It's not this, it's not that. But the doctors clearly were like, there's something wrong. But in my head I was like, maybe I was like overplaying this, you know? I'm fine. I felt fine cuz it was just like a one time thing and I'm like, we're spending a lot of money when I'm good now. It just seemed like maybe it was just like a weird fluke, but it was really reassuring to know that there was actually something wrong, and I'm really, really just thankful and grateful that I was able to find doctors who listened to me and understood me and acknowledged me instead of, you know, brushing it off and just downplaying how I was feeling. [00:08:42] Jill Brook: Yeah. So were you able to identify any particular trigger, like had you been sick or... [00:08:48] Jolie: yes. So I think what we chalked it up to was back in July of 2020, I had COVID for the second time and my cardiologist had mentioned, you know, there have been numerous studies that are starting to come out where, you know, it's a condition that people develop after having COVID, especially in young, healthy women. And that's really just what she believes is kind of where it all stemmed from. [00:09:20] Jill Brook: Okay, so tell us about your worst POTS day ever, like when you hit rock bottom in terms of symptoms. What did it look like? [00:09:28] Jolie: Oh my gosh. So it was actually this year in January, I had been feeling really sick for about three weeks, and then I woke up one morning and I just had the worst tunnel vision. Could not stand. I just could not think straight. And I asked my boyfriend, I was like, can you please just drive me to the urgent care because I just dunno that I can drive. I get to urgent care. Wait an hour. They see me, my heart rate is like 215 and they're like, we can't help you. You have to go to the ER. And I was like, okay. And so then we get back in the car, go to the er. Meanwhile, you know, I am throwing up, I have such shortness of breath. You know, your hands are starting to tense up. You're starting to have a lack of oxygen going to your brain. And thankfully they saw I was in such bad condition, I didn't have to wait in the ER. And they put me right back. And I spent four days in the hospital for levels at almost of zero for phosphate, magnesium, calcium, electrolytes. And it was because for the last six months I had been chronically throwing up just about everything. And it was because of all of the medication that I was taking. They think my body just couldn't handle it. And I became immunosuppressed and they think I just developed some virus and it just hit me at the perfect time and I just couldn't fight it off. [00:11:10] Jill Brook: Oh my goodness. That sounds so miserable. [00:11:14] Jolie: Yeah, it was not a fun week. [00:11:16] Jill Brook: So goodness. So how much progress have you made from that point? [00:11:23] Jolie: I would say I have made so much progress. My cardiologist, my parents, and I, we all kind of came to an agreement to completely wean me off of all medication that I was taking, not just POTS related and kind of reassess and reevaluate because obviously there was some sort of disconnect. I'd been really sick for months on a bunch of different types of medication and we took that medication route and now we're taking a more holistic approach and it's going very well so far. You know, I still have my bad days, but for the most part, I've been doing a lot better from where I started when I was first diagnosed of, you know, passing out at least once a week. to you know, being able to keep it under control, and I think a lot of it comes with just learning about POTS and kind of knowing what you have to do in order to stay healthy. [00:12:25] Jill Brook: Wow. That's great. Do you mind talking a little bit more about what you mean when you say a holistic approach that's working better for you now? Like what kinds of stuff do you do? [00:12:35] Jolie: Yeah, absolutely. So for me it's more of taking I'm sure you know what Element T is, but you know, drinking at least three of those a day has been super crucial and a lot of isometric workouts has been super impactful and super helpful in terms of keeping that blood flowing in my body. And then, You know, I start my morning cuz if you do some research, you'll notice that there's a lot of GI related issues with POTS and I do a lot of like L-glutamine, lemon water, clean eating. It's a lot about what you're putting into your body. So that has also really helped and changed my health as well. [00:13:26] Jill Brook: Can I ask you to talk a little bit more about your isometric exercises? Now, I seem to recall isometric is the kind of exercise where you're not moving, right? Like you're activating muscles, but you're not actually moving your body. Can you talk more about what you do and how it helps you? [00:13:42] Jolie: Yeah, absolutely. I used to be really big into like weightlifting and running on the treadmill, and now I can't do all that stuff. So, you know, you really have to resort to a different route of exercise. So you can go on YouTube and look up isometric workout routines, or there are even some, you know, specific to POTS, which are super great and a lot of it is, you know, you're either sitting on a chair and or you're sitting on the ground doing leg exercises, you know, lifting your legs up and down. Just still getting that range of motion without having to feel like you need to do that cardio, which you're still getting that workout. You're still building those muscles. You're still burning those calories, but in a way where you're not having to do jumping jacks or you're not having to do sprints, if that makes sense. [00:14:36] Jill Brook: Yeah. So at any time did you ever try the Levine protocol, cuz this sounds quite different from that also. And so did you just try this first and it worked for you or did you try the Levine? Because a lot of people fail the Levine protocol and I think that sometimes we don't always have good answers for them. [00:14:54] Jolie: Yeah, I never tried Levine, I just went with this one at first and it just worked out for me. So that's just kind of what I stuck to, I guess you could say. And again, it is different for every single person, but it's worked out for me and I'm just super grateful for it. [00:15:14] Jill Brook: Wow, that's fantastic. Okay, so like, how functional are you now? What's a good day and what's a bad day for you now? [00:15:21] Jolie: Yeah, I would say a good day is where, you know, every morning I always have to set my alarm a little early just so I can, you know, lay in bed for a minute, then sit up for a minute and then, you know, get on moving. But I'd say a good day is where, My heart rate doesn't get above like 180 and steps will always be hard, especially at work. They're just gonna be hard. I always say it's a good day. If I can get up a flight of stairs without having to stop, that's when I know. I'm like, you did it, girl. And then a bad day is, you can kind of feel it when you first wake up, whether or not you're gonna have a good day. But it's that brain fog. Sometimes I will get the worst brain fog and it's like a short term memory loss. It feels like you just kind of forget everything, or you forget just the most basic things, basic information, names of things, and you're just sitting there beating yourself up cuz you're like, I know this, but it's so hard some days. And that's when you kind of have to just give yourself some grace. I thankfully only have to go in the office two days a week. So I do get to spend the rest of my days sitting at home, sitting in a chair. I have a little pedal cycle situation that helps keep my legs moving while I'm sitting. And I found that to be really helpful as well. [00:16:52] Jill Brook: Oh, fantastic. So what helps you cope with all this? [00:16:57] Jolie: Oh, that's a good question. I think what helps me cope is just knowing that everything happens for reason in that, you know, you can find the good in anything. For me, it was that I love salt, I put salt on anything. So now it was just more of an excuse to have more salt and not feel bad about it. But I think it's also that there are other people who have it so much worse, whether it be POTS or with other illnesses, that it could always be worse and to just be thankful for every day. [00:17:34] Jill Brook: Has chronic illness changed you very much as a person? [00:17:37] Jolie: Definitely. I think it's made me more aware of invisible illness and have so much more respect for people with invisible illnesses and I can now, you know, really relate and understand their pain. Whereas before I really was clueless, to be honest. [00:17:59] Jill Brook: Yeah. What's the best type of support or help that friends and family can give you these days? [00:18:05] Jolie: You know, I think it's more of just encouragement on those bad days. I mean, I have a really great support system who have really helped me through this whole thing and taken care of me on my bad days, but you know, just those words of encouragement that it's just a bad day. Don't beat yourself up over it. There's nothing you can change about it. You just have to keep going and tomorrow will be better. [00:18:35] Jill Brook: You had mentioned that Chattanooga has all kinds of wonderful activities to do there, like hiking and paddle boarding. I'd say paddle boarding is like my idea of a nightmare, having to stand still. You can't flex your muscles, can't use the calf muscle pump. What do you enjoy doing nowadays for activities? [00:18:59] Jolie: Yeah. So I would say I've just gotten to a point where I can walk my dog alone. So that's something I really like to do. Before, you know, it was really hard just because as I got weaker, he was getting stronger and we finally got a trainer so he doesn't pull on me. And now I can have nice walks with my dog where he's not pulling me. And I really enjoy that because I'm still able to get exercise, still be outside, but not have to Feel, absolutely winded, out of breath and like, I'm gonna pass out. So for right now, that's about as much as I can do. But I really enjoy it. [00:19:46] Jill Brook: Have there been any silver linings? [00:19:49] Jolie: Oh yeah, I would say it's, you know, given me more perspective on the world and about invisible illness and about POTS. You know, it's just really helped me shape into who I am today. [00:20:08] Jill Brook: Are you up for doing a speed round where you can just say the first thing that comes to your mind. [00:20:13] Jolie: gosh, absolutely. [00:20:15] Jill Brook: Okay. We know this is slightly perverse. What is your favorite way to get salt? [00:20:20] Jolie: Element T [00:20:22] Jill Brook: What is your favorite time of day and why? [00:20:25] Jolie: Nighttime. [00:20:26] Jill Brook: Okay. Why. [00:20:28] Jolie: It's nice to just be able to relax and decompress and put my feet up and not have to feel guilty about taking a break. It's my time to really relax and rejuvenate for the next day. [00:20:41] Jill Brook: Where is your favorite place to spend time? [00:20:44] Jolie: Mm. It's gonna sound lame, but my bed. [00:20:48] Jill Brook: Mm-hmm. How happy are you that you have a doctor for a parent? [00:20:53] Jolie: Oh my gosh, over the moon. It's a lifesaver. [00:20:57] Jill Brook: Yeah, it sounds nice. What is one word that describes what it's like living with a chronic illness? [00:21:03] Jolie: Tiring. [00:21:04] Jill Brook: What is some good advice you've tried to live by? [00:21:07] Jolie: Carpe diem live life to the fullest. [00:21:10] Jill Brook: What is something small or inexpensive that brings you comfort or joy? [00:21:16] Jolie: Mm. I would say my dog, he was free cuz I got him off the street and he's relatively small. [00:21:26] Jill Brook: Who is someone you admire? [00:21:28] Jolie: My mom. [00:21:29] Jill Brook: Why. [00:21:31] Jolie: she is just such an amazing role model and has been my biggest advocate through this whole process. And she also has had numerous health issues in her time. And just seeing how she handled them is really just kind of shown me how I should handle this and it's been my biggest motivation to, you know, just keep going and lead by her example, because if she can do anything then so can I. [00:22:04] Jill Brook: Oh, great. Okay. What is something that you're proud of? [00:22:08] Jolie: I would say being able to still finish college after being diagnosed with POTS. [00:22:15] Jill Brook: What is the toughest thing about POTS? [00:22:18] Jolie: Not being able to do everything other people my age can do. [00:22:23] Jill Brook: What is an activity that you can enjoy even when you're feeling really POTSie? [00:22:27] Jolie: Mm. I'll go sit out back in our backyard with my dog and I'll throw the ball to him cuz it's still, you know, getting that fresh air and I'm moving my arms. [00:22:36] Jill Brook: Do you have any hacks that help you fall asleep? [00:22:39] Jolie: Definitely magnesium. It's super good for you and it's really great in terms of helping you sleep, and I always like to count down from 100. I promise you it works every time. [00:22:52] Jill Brook: Nice. Okay. Do you have any hacks to get energy when you need it? [00:22:57] Jolie: I would say I'm not a big caffeine person. Hmm. I would say, I don't know. There's something about element tea that will get you fired up. So I'll say that. Element tea [00:23:10] Jill Brook: Okay. What is a gift that you would have sent to every POTSie on the planet if you had infinite funds? [00:23:17] Jolie: again. Element tea. [00:23:20] Jill Brook: Okay, we should get a [00:23:20] Jolie: it, literally it is changed my entire life. It's amazing. [00:23:26] Jill Brook: Okay, so besides Element T, what are you grateful for? [00:23:30] Jolie: I would just say my family and my doctors just being there to support me, and I think they're really the ones that have been my biggest advocates and biggest cheerleaders and have helped me, you know, get to where I am right now. [00:23:47] 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? [00:23:54] Jolie: Oh my gosh, yes. In Walmart. It was so gross. I was checking out and here goes my tunnel vision and I just had to sit down right there and I was like, just give me five minutes and I'll be out of your hair. But yeah, weirdest, most uncomfortable. And probably the dirtiest too. [00:24:16] Jill Brook: Which section of Walmart? [00:24:18] Jolie: It's in the condiment section, so, you know, it's, it's highly trafficked right there. Not ideal. [00:24:25] Jill Brook: First, I thought you were saying the condom section, and I could see how that would be super awkward, but it [00:24:32] Jolie: No condiments. [00:24:34] Jill Brook: the mustard, and the ketchup. [00:24:36] Jolie: Yes, the mayo, the ranch. I'm dead. That's hysterical. [00:24:41] Jill Brook: Okay, so I just have a couple more questions. What do you wish more people understood about POTS? [00:24:48] Jolie: I wish that people understood that externally we might look completely fine, but internally it's a completely different story. [00:24:59] Jill Brook: Do you have anything you'd like to say to your fellow POTS patients who are listening, especially the ones who might be having their worst day ever? [00:25:08] Jolie: Yeah, I would say drink your salt, boys and girls, and you know that tomorrow will be better, even though it doesn't feel like it. Tomorrow's gonna be a better day. Just keep your head up and I love you. [00:25:23] Jill Brook: Oh, that's so beautiful. We're gonna just end it there. Jolie, thank you for sharing your story and your good vibes, and I know that everybody listening wishes you all the best going forward and probably a lot of people are ordering Element T right now, so they [00:25:39] Jolie: should. [00:25:39] Jill Brook: too. Okay. Well, thanks so much 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.