E163: POTS Diary with Courtney, a dog lover from Texas

Episode 163 September 23, 2023 00:33:50
E163: POTS Diary with Courtney, a dog lover from Texas
The POTScast
E163: POTS Diary with Courtney, a dog lover from Texas

Sep 23 2023 | 00:33:50

/

Hosted By

Cathy Pederson Jill Brook

Show Notes

Several in her family have had mysterious symptoms for years, but Courtney was the first to be diagnosed with POTS. She uses Chat GPT to help her write letters to practitioners and organize her medical records.

You can read the transcript for this episode here: https://tinyurl.com/potscast163

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 Diaries with Courtney [00:00:00] Jill Brook: Hello fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Courtney. Courtney, thank you so much for joining us today. [00:00:13] Courtney: Oh, thank you for having me. I'm so excited. I've been counting down to this for, you know, a couple months now. [00:00:20] Jill Brook: Yay. Okay. Well, we're excited to get to know you. Tell us the basics about Courtney. [00:00:25] Courtney: Yeah. So I'm 34. I newly live in Marfa, Texas, which not a lot of people know where that's at. We're far west Texas. It's a tiny little like cowboy art town, like it's super random. we've got, you know, good health food stores, but you know, the closest airport is three hours away. And our population is less than 2000. Even like the closest major city is about three hours away. Like we are in the middle of nowhere. [00:00:57] Jill Brook: neat, okay, so when you say it's a cowboy art town, do you mean cowboy slash art town or is there a kind of art considered cowboy art? Or tell us also, why don't you have a Texas accent? [00:01:08] Courtney: Yeah, I've actually from Texas, I've lived here my whole life. I grew up in Dallas, so maybe that's why I don't have much of an accent in the city, in the suburbs. But in terms of, you know, the cowboy art thing, I'm gonna go with all of the above. We have art galleries here with, with pieces that, you know, travel between galleries in New York and LA but then we also have actual, like cowboys doing art, like leather work and things like that. But then we have, you know, Michelin star restaurants, and it's a really cool, weird place. It's also kind of an alien town. We fell in love with it immediately the first time we visited. [00:01:48] Jill Brook: Wow. Okay, so that sounds amazing. And okay, so who's we? [00:01:52] Courtney: My husband, me and my husband, and we have three dogs as well. [00:01:56] Jill Brook: Oh, very nice. Okay, so what are you passionate about? [00:02:00] Courtney: Definitely, definitely dogs. Before moving out here, that was my career. I was a general manager of a dog resort and you know, loved it, of course, cuz I, I love dogs, you know, got all the perks from my own dogs. I was in that industry for about six years, but, It just, it got harder and harder on my system to do, and especially as I got into, you know, management and running things. It got to be too much on my, my little POTSie heart. [00:02:29] Jill Brook: Oh yeah. Okay. Well, I wanna come back to that in a minute. But first I'd love to know how would your friends describe your personality? [00:02:37] Courtney: I am very structured, very organized. I think that's why I did so well at my last job. I, I truly, you know, thrived in it, minus the stress of it, but definitely a planner. But I also, you know, I like to think that I have a good sense of humor. it's kind of a dark sense of humor, but I'm not just all type A, if you know what I mean, but it is a strong trait. [00:03:02] Jill Brook: Well, I can see how that would be good for running a dog resort. I just have to ask, can you tell us what it was like at the dog resort, because it sounds amazing. [00:03:11] Courtney: Yeah. So this last one I worked at I got a shout out to them, my legacy crew, y'all are the best I miss y'all. But we would, you know, 7:00 AM you would have dogs start arriving. We would have anywhere from probably 50 to a hundred dogs there just for daycare, and then you'd have boarding dogs there too. So, you know, it was constant, structured chaos, if you know what I mean. It was regimented, but you know, you always had to be on your toes. I mean, you were working with animals at the end of the day. [00:03:41] Jill Brook: Wow, that sounds, it almost sounds like a Disney movie to me. [00:03:45] Courtney: Yeah, yeah. It was, it was a lot of fun in ways, in ways it was very stressful, but it was a lot of fun too. I feel very, you know, fortunate that I got to, to experience that. [00:03:57] Jill Brook: Okay, so you had mentioned your body had a hard time dealing with that lifestyle. Tell us more about what your body was going through. [00:04:06] Courtney: Yeah. So I, of course, just like anybody else thought I was just overly stressed, you know, I was working in a customer service job through the pandemic which was, you know, difficult all on its own. But, it started to get harder and harder. I've always been very, you know, fit and athletic worked out, lifted, ran all that. And I think that combined with just like, work getting harder and harder and not realizing what my, my blood pressure was doing every time. I still outside of work, constantly move like, I'm like a little hummingbird around my house. I can't sit still. But you know, in that job it was sit, stand, you know, kneel, get in any sort of weird position on the ground to work with a dog. And I think I just didn't realize that there was a factory fire going on inside of me. [00:04:55] Jill Brook: Oh yeah. So I think before we started recording, you had mentioned that you also have EDS. [00:05:01] Courtney: Yes, so that's what I was convinced of first. I had a chiropractor mention it to me and I had actually heard of it before because I'm a really big fan of RuPaul's Drag Race, so, And there's a Queen Evie Oley, who has it. But I was like, I don't have that. I mean, she's a full blown contortionist. Like, I can't do any of that. There's no way. But, you know, as I started looking into it and, you know, family history, I was like, oh, oh my God, I, I think I do. And so that started the journey of just trying to get a diagnosis. And that was probably only like two years ago. [00:05:39] Jill Brook: Yeah, I was gonna say, tell us more about you were getting a diagnosis for both EDS and POTS. What was that like and how many doctors did you see? Did you ever think it was all in your head? [00:05:48] Courtney: No. A lot of the doctors that I saw were actually growing up. I had a lot of, you know Bone breaks, fainting. One time I, you know, we even thought it was a full-blown seizure, but you know, looking back on it now, we just think it was a myoclonic syncope. But once I learned about this and was really convinced that I, I did have it. I went to two doctors. The first one was a rheumatologist who I got the dreaded, well, if you have it, what's the point of diagnosing it because there's no treatment. So I quickly blew her off. And after we moved out here and got settled, I actually went and saw Dr. Saperstein out in out in Phoenix and. , he was wonderful. His team was wonderful. My path to diagnosis was pretty direct. [00:06:35] Jill Brook: Yay. So wonderful to hear that. [00:06:38] Courtney: Yeah, I know. I'm very fortunate for that. Most people don't, don't get that. [00:06:43] Jill Brook: So once you had a diagnosis, were you able to find treatments that helped very much, or lifestyle changes or anything else? [00:06:49] Courtney: Yeah, yeah. Of course, you know, he started me on, you know, different medications, different therapies. I always have trouble pronouncing it, keto. ketotifen. I've found that that's helped the most you know, headaches have gone down. But, I'm on the, you know, the same regimen that everybody with MCAS has all the antihistamines and things like that. And definitely have noticed a difference. I feel, you know, my system has calmed down enough that I can start figuring out what my exact triggers are. [00:07:18] Jill Brook: Yay. [00:07:19] Courtney: Yeah. [00:07:20] Jill Brook: Is there anything lifestyle wise that helps you more than anything else? [00:07:25] Courtney: Sleep. Sleep is very important. Nothing else matters. If I don't get seven to eight hours of sleep. I can take all my supplements, my medications, ice, heat, everything, but if I don't get enough sleep, it doesn't matter. [00:07:41] Jill Brook: So how functional are you now? [00:07:44] Courtney: I'm pretty functional. I've always been very active. You know, I'm certainly not like running or lifting anymore. Now that things have started to calm down. I'm definitely active. I'm doing physical therapy so that's really helping, you know, get me back into that groove cuz I would like to get to a point where I could be, you know, an athlete again. And also it's very hot here in Texas. I'm not, you know, your normal POTSie who can't do the heat. I actually can't do cold. But it's still a little too hot right now to do much of anything. [00:08:17] Jill Brook: Yeah, [00:08:18] Courtney: Normally we'd be with the dogs outside and all that, but [00:08:22] Jill Brook: Right, right. You had mentioned before we started talking that Chat GPT or artificial intelligence had been really useful to you in some of your medical related adventures. Why don't we start by having you tell everybody what Chat GPT is in case they haven't heard of it, and then we'll go into how it's helping you. [00:08:42] Courtney: Yeah. Yeah. So I, I actually asked Chat GPT to tell me what chat GTP is so that I could give you you know, the correct definition because this is certainly not my wheelhouse. So Chat GPT is a computer program you know, and a very advanced computer program that uses aI to understand human language, so you could really think of it as like a virtual assistant. You can conversate with it. You can ask it almost, almost anything. And it's gonna break it down for you. And I've personally used it to kind of organize my medical binder for my doctors and to communicate with them because Lord knows we get in those rooms and the brain fog hits and we forget everything. And being able to lay all that out and have Chat GPT really put it in a professional way has helped me tremendously, especially living out here in the middle of nowhere. You know, my options for medical care are not, are not vast. [00:09:46] Jill Brook: Wait. Okay, so I need to stop you there so I can ask a question and clarify because my understanding of Chat GPT is that it is like a large language model and it is really good at predicting the next words. So my use of it so far, just in playing around cuz my husband is addicted to it, is that, you know, you can have it write you a poem or you can have it write you an essay about something or you can have it look over a certain article and summarize it for you and You interact with it as if it is an assistant, you can just ask it to do things you know, write me a paragraph about this or summarize this article. So how did you use it to get it to organize your medical files? I'm intrigued by that. [00:10:32] Courtney: So it's all about just how you prompt it. So, you know, I can't remember exactly word for word what I asked it to, you know, when I was doing this, but I just said, you know, I am looking to put together an informational binder for my medical care team. I explained, you know, I have h EDS, POTS, MCAS what all should be in this binder? What all do my doctors need to know? And you know, obviously it came out much better than that when I was typing it into the machine or into my phone. It came back with things like Previous history ,medications, any therapies that I'm doing now that I've, you know, done in the past? I included a couple different articles and but most importantly I always do a cover letter, and that cover letter is, you know, basically explaining to them that I have this, I am looking for a doctor who, you know, a, believes me, and B, you know, wants to work with me on this. So I've given that to the doctors that I've seen here in town and, you know, it's been so well received. [00:11:38] Jill Brook: Wonderful. So it's good at putting out a really professional letter, I'm guessing, that takes care of grammar and spelling and everything and it's able to get that across. So did you have Chat GPT review your medical records? [00:11:53] Courtney: No. [00:11:53] Jill Brook: it sort of a broad overview? I have these symptoms. [00:11:56] Courtney: Yes. Yeah, no, I didn't have it. I think my husband would like to play around with that if that's something that we can do. But so far, no. I've just used it kind of to, to communicate with my doctors. That way, I don't know, sounding like a hypochondriac and, you know, it looks professional and they take me serious. [00:12:13] Jill Brook: Yes. That is so smart. That's great. You know, it's funny. [00:12:18] Courtney: for it. [00:12:19] Jill Brook: Oh, is, is your husband a technical guy? Yes. [00:12:23] Courtney: is, yeah. He's a software engineer, so and just the smartest person I've ever met. Great with computers and technology and you know, he teaches me all of this. [00:12:35] Jill Brook: Wonderful. Yay. My husband does something similar, so that's why I've been learning about this. But, so we had tried to use it for something that is relevant to all this, and we had kind of a funny experience and maybe you or your husband would have tips on how to improve on this. But when I started learning about Chat GPT I thought this is fantastic. I'm gonna be able to make the most personalized menus ever. So, for example, sometimes people in our situation have really complex dietary needs. Maybe they need a diet that is gluten free and low in FODMAPs, and low in lectins, and low in histamines, and maybe on top of it they're vegan. And then that's probably too restrictive of a diet. I'm exaggerating there just for to make my point. But if you wanted to make somebody a menu and you wanted it to be nutritionally balanced and you wanted it to have so much protein and carbohydrates and fat, and maybe the person doesn't like you know, carrots. So you wanna leave those out and maybe they want everything to be a really quick recipe and easy. I thought, oh, okay, I'm just gonna tell Chat GPT to make a two week menu that does all these things and it's gonna be amazing. It'll just figure it out and it'll do it. And it was an interesting process because, have you heard of the hallucination problem with AI? [00:14:04] Courtney: I haven't. [00:14:06] Jill Brook: Sometimes AI, if it doesn't really know what to do, it'll just make something up, but pass it off very confidently. Like it won't say, I'm not sure what to do. It'll make something up and give it to you. And that's what it did for this. Even at the most kind of beginning stages of doing a complex diet, like even just asking it, could you make a two week low histamine diet? And provide recipes. It didn't even get the low histamine, right? So for example, it just kept using so many tomatoes and shrimp, two very classic high histamine foods. And I was like, what the heck? It could kill somebody and give them anaphylaxis if they had really severe histamine issues. So then my husband was very smart and he hooked it up to this website we had made. Called whatthebleepcanieat.com. And it's a website where you can put in what your dietary restrictions are, like low FODMAP and low histamine, and it'll tell you the foods that are compatible with both. And we asked Chat GPT to only use the food lists produced by that and then try it. And it's still that it, it could not stop using tomatoes. And so I have to admit that I kind of lost faith in it and I was. [00:15:21] Courtney: Yeah. Yeah. I [00:15:22] Jill Brook: don't know what it's doing. And I'm sure it's improving all the time. I know it's like getting better every day, and it's the [00:15:29] Courtney: So that's what I was gonna say. It probably, it probably is, you know, if you did it a little while ago, it was probably, you know, an older version. So it is getting smarter and smarter. Like for an instance, the one that I usually use is just the one on my phone, and that one's only up to date until actually 2021. I haven't had any issues with it, but I could see, you know, how as the newer generations are learning that they're gonna force tomatoes and shrimp on you constantly. [00:15:55] Jill Brook: But I can see where it's amazing for writing professional letters and things like that. That is super smart. [00:16:02] Courtney: Yeah, I've even used it for food. I can't eat gluten. I try to do low carb. And so I don't necessarily use it for recipes. I use it more for just, what should I get at the store, you know, for shopping lists like I am, you know, Low carb, no gluten, high fat, high protein, you know, basically keto, what are some snack options that I should get as well as components to make a meal. And then that way when I go to the store, I don't forget things. I get more of a variety of things. So I found it's been very helpful with that as well. [00:16:36] Jill Brook: Smart. So I have actually wondered if this might be useful in people who are fighting insurance battles. Cuz I just know in my own history I've had to write a lot of letters to insurance [00:16:48] Courtney: really [00:16:48] Jill Brook: and then to write appeals and so on. And I wonder if it could get good at doing that. [00:16:55] Courtney: Yeah, that's actually a very good idea. I've never even considered that, but you know, I know insurance is a giant pain in the butt, so any, any help, I'll take it. [00:17:06] Jill Brook: Yeah. Yeah. Okay. So what about other kinds of AI? Have you played around with the ones that, for example, can do like images or make art on demand or [00:17:17] Courtney: My husband does. Yeah, yeah. Like I said, all I have is the one on my phone. I'm not really one to like kind of sit there on my computer. But he is just constantly, you know, on it, playing around with it, generating things. He's my little computer nerd. [00:17:32] Jill Brook: I think your husband would get along very well with my husband. [00:17:35] Courtney: It sounds like it. [00:17:37] Jill Brook: It's funny. Yes. In fact our walls are gradually getting more and more decorated with pieces of abstract art made by mid journey, [00:17:46] Courtney: Yeah, [00:17:47] Jill Brook: it's almost like having some of these painters as your just in-house helper. [00:17:54] Courtney: absolutely. I mean it, it can create beautiful works of art. [00:17:59] Jill Brook: Yeah, it's kind of scary. Wow. Well, that's neat that you've kind of taken your strengths and your husband's strengths and used them to improve your medical situation, so he sounds very supportive. Can I ask like how this has been between the two of you as you went through all it? [00:18:15] Courtney: Yeah. Yeah, absolutely. he's very supportive. If you had to ask me who I'm the most thankful for, it is 100% him. You know, I wouldn't have been able to take this time off of work to really figure out what's going on with my body. If it weren't for him Bless him. He's not medically minded, but he's smart enough that he can look into it and, and teach himself, which he's done a wonderful job of doing. [00:18:40] Jill Brook: Wow. That's great. Yay. Shout out to great husbands and partners. Thank you. Has there been any silver linings to all this? [00:18:49] Courtney: I would just say my research skills have, have gone way up. I'm constantly, you know, researching, experimenting, anything I could do to improve my situation. I'm down. [00:19:04] Jill Brook: Yeah. Is there anything you wish you'd known sooner? [00:19:08] Courtney: This clearly has affected me my whole life, so I just wish that I had known about it a lot sooner. You know, there's definitely things I would've done differently. But, that's really the only thing, just knowing sooner. [00:19:20] Jill Brook: Can I ask you about the process of figuring out what you want to do next? So I know you had a job that you were very good at, it sounds like, and you loved it, and your body couldn't take it. And I know I've been in that situation where my brain loves something but my body doesn't, or vice versa, and it's so frustrating and it sounds like now you're taking time to maybe figure out what to do next. Can I just ask how you feel about that, what you're thinking? [00:19:51] Courtney: Yeah. [00:19:51] Jill Brook: angry? Sad, excited? [00:19:54] Courtney: It's, it's truly an identity crisis. You know, I've been in the customer service industry since bef, I started waiting tables at 16. I've always done a job where I'm on my feet, I'm running around, I'm with people. So, you know, my husband had the great idea of me getting into project management, which takes, you know, all those organizational skills that I have so many of and I'm just gonna do it in the tech world instead. But I have to figure out the tech world first. You know. [00:20:27] Jill Brook: Yeah. Yeah, it sounds like you have a great attitude. [00:20:31] Courtney: Yeah, I'm probably about, maybe a little more than halfway through, like some training for it. And now that I have a better understanding of it, and I kind of equate it to being like the team's lawyer. Like, I don't have to know anything about, you know, what you're doing, but you have to be completely honest with me and tell me everything, or, you know, we're not gonna make it to the finish line. [00:20:53] Jill Brook: Mm-hmm. [00:20:54] Courtney: You know, I don't know about doing crimes, but you gotta be completely honest with me. If you wanna finish this project slash not go to jail. [00:21:02] Jill Brook: Yeah. So that's great. So it sounds like you thought about your skills and you talked about it at least with your husband. You kind of thought of something going forward and then you found some training that would help you kind of figure it out. [00:21:15] Courtney: Yeah. Yeah, that's exactly right. There's not necessarily any like, schooling for it or anything, so just different programs online and I might do another one after this just to really like, hone those skills. But the pieces will all fall into place once I start the career. [00:21:31] Jill Brook: Yeah. No, that's great. Can I ask, what are your favorite activities nowadays that maybe you are not lifting weights and running as much and stuff? [00:21:42] Courtney: Yeah. A lot of it is just, you know, really getting to know this new place. it's eight hours away from where I grew up. It's a totally different type of Texas, mountainous and rugged and beautiful. Completely unlike Dallas, so there's lots to explore, lots of restaurants, lots of cool things to see. So a lot of that. And then probably my Nintendo switch. [00:22:05] Jill Brook: Excellent. So it seems like you're really thriving right now, but if I could ask you to imagine your past self at your worst in terms of your health... can you tell us what that moment was? And the reason I'm asking is because I know that people tend to listen to this podcast when they're not feeling great, so I'm wondering if you can tell us when was that toughest moment for you, and then what do you wish someone had said to you? [00:22:34] Courtney: Yeah. So I definitely know that exact moment. In full honesty, I had a, a huge breakdown when I was working this previous job. It just got to a point where my body just turned off and it said no more. So that was definitely when I was at my worst. That was probably about two or three months before I stepped away this past October. I had to come up with an exit plan and, you know, kind of baby step my way out of it. But that was, that was definitely, definitely it. I wish I had known more at the time, you know, what was going on with my blood pressure and I could go back and like actually measure it and see. But yeah, that, that was the moment where I was like, enough is enough. And in terms of, you know, if I wish somebody had said something to me sooner I don't really have an answer for that, just because, you know, anytime I was struggling, anybody that I went to, whether it been my husband, my best friend who was my assistant manager or my bosses they were always, you know, very caring and they understood, they didn't understand what was going on with me, but neither did I. But, you know, they were very understanding and caring that I was stressed. [00:23:42] Jill Brook: Yeah. At that moment, did you have faith that things would get better again? And did you feel like where you are now is, you know, where you expected to get to or are you pleasantly surprised or are you hoping to see better things yet, or [00:24:00] Courtney: I'm still hoping to see better things yet. I would like to get more control over my heart issues. The rapid racing and all of that so that I can you know, be more conditioned to, to work out again. I'm not quite there. I have a very good physical therapist who I'm working with who he's very considerate of my heart rate. But. Definitely better than I was, you know, a few months ago, especially after we first moved here. I had a really hard time, I think with the altitude adjustment. Nobody tells you that West Texas is as high as Denver. So yeah, so I had a really hard time with that. But once I really got my diagnosis, got on, you know, different treatments things are definitely coming down so that, I can start doing those things I love again. [00:24:44] Jill Brook: That's great. Are you up for a speed round where you just say the first thing that comes to your mind? [00:24:50] Courtney: sure. [00:24:51] Jill Brook: Perfect. What's your favorite way to get salt? [00:24:55] Courtney: Pickled carrots that I make. [00:24:57] Jill Brook: Ooh. What is the drink that you find the most hydrating? [00:25:01] Courtney: I love the harmless harvest brand of coconut water, [00:25:05] Jill Brook: What is your favorite time of day and why? [00:25:09] Courtney: Probably in the morning, this job that I had, I had to be a morning person and I don't think I'm ever gonna grow out of that. [00:25:16] Jill Brook: Where is your favorite place to spend time and why? [00:25:20] Courtney: Probably just watching TV with my husband. I know that sounds so cliche, but even though we, we live together and we both are in the house all the time, we don't spend a lot of time together. We're very independent people, but you know, when we do come together and we, you know, watch a show or whatever, it's just very peaceful. [00:25:39] Jill Brook: How many other POTS patients have you ever met face to face? [00:25:43] Courtney: I think just one. [00:25:45] Jill Brook: What is one word that describes what it's like living with a chronic illness? [00:25:50] Courtney: Frustrating. [00:25:51] Jill Brook: What is some good advice you try to live by? [00:25:54] Courtney: So there's another podcaster named Marcus Parks, and he has a quote that it's pertaining to mental illness, but it definitely applies here. And it's that, you know, mental illness is not your Fault, but it is your responsibility and that's how I feel about all of these conditions. You know, didn't ask for this, but if I wanna feel good and you know, be present for those around me, then I have to take care of myself. [00:26:20] Jill Brook: That's great. What is something small or inexpensive that brings you comfort or joy? [00:26:26] Courtney: Oh my gosh. There's a restaurant here in town called Bordeaux that has a salad that I never stop thinking about, we probably get it about every two weeks. But I look forward to it those entire two weeks. [00:26:42] Jill Brook: What is the most fun thing you've ever done? [00:26:45] Courtney: Most fun thing I've ever done. Oh my gosh. my husband and I, once we got married, a week later we took off and moved to Vegas. We lived there for a year and then after that, and this has all been for different careers of his, and then we went to Eastern Washington and then after that we came back to Texas. But just being able to get married and, you know, peace out from the rest of the family and, and go and do it on our own. [00:27:13] Jill Brook: That's very cool. Who is someone you admire? [00:27:17] Courtney: I'm probably gonna get a lot of sour faces for this, but I'm gonna say Joe Rogan. Reason being, I really thought about this and who my answer would be. I really admire his dedication to his health. You know, he's very conscious of that and different therapies, and I just I really admire his knowledge on that. [00:27:41] Jill Brook: Cool. What is something that you're proud of? [00:27:43] Courtney: I'm really proud of getting this diagnosis as quickly as I did. And I don't mean that in a, like, oh, I had the, the means to be able to go get the diagnosis, but this is definitely something that has affected, you know, me my whole life and most likely my mom too. I saw her Growing up having these same issues. And I'm really proud of the fact that I was able to figure out what is afflicting our family. You know, my brother probably has issues with this too. He's about to start that, that journey. So I'm really glad that I was able to bring my family some, some answers. [00:28:19] Jill Brook: Wow, that's huge. Yeah. What is the toughest thing about POTS? [00:28:24] Courtney: Oh. Probably just, you know, having to do the same thing every day. When I wake up I have to make sure I, I get my sodium in, I start my medication. I know I'm preaching to the choir, you know, I know that we all have to do this, but I would definitely say, you know, having to just stay on top of everything or you could fall apart so, so fast. [00:28:49] Jill Brook: Yeah, you're making me think about how like for the first year that I wore really tight compression stockings. Every morning when I'd wake up and put them on, I'd be in such a bad mood putting them on, and it took me like an entire year to just get used to doing it without thinking about it. [00:29:05] Courtney: yeah, if I don't get them on fast enough in the morning, they're, they're they're not going on. [00:29:09] Jill Brook: Do you have any strategies to help you fall asleep? [00:29:13] Courtney: I'm, I'm a pretty good sleeper. I, I wasn't before I got my diagnosis and calmed my system down. But I fall asleep pretty fast. I sleep through the night. My only issue is, you know, come 7:00 AM. I am awake no matter what time I went to bed the night before. I am awake. So if anyone has any tips for staying asleep in the morning, I'm all ears. [00:29:37] Jill Brook: Do you have any strategies for getting energy when you need it? [00:29:42] Courtney: So I'm actually having to kind of rethink that cuz I've, you know, given up caffeine and I'll do like green tea or if I'm, you know, really needing some energy, I'll do like half an energy drink or something, really, you know, low milligram for sure. [00:29:59] Jill Brook: Mm-hmm. [00:29:59] Courtney: I wish I could say that I got that, that burst of energy from sodium that, you know, a lot of us say we get, but I just, I don't. [00:30:06] Jill Brook: What is something that you're grateful for? [00:30:09] Courtney: My husband 100%. It goes without saying. He's been so supportive through all of this. He never bats an eye when I wanna change my diet. You know, when I eliminated all the toxic chemicals from our house overnight, no questions asked. Anything I need, he's there to support. [00:30:28] Jill Brook: Aw, yay. [00:30:30] Courtney: He's the best. [00:30:31] Jill Brook: have you ever had to sit down or lie down in a weird place because of POTS, and if so, where was it? [00:30:37] Courtney: I haven't had to sit down or lie down, but I did pass out at a pizza restaurant face first into a pizza. [00:30:46] Jill Brook: Oh. [00:30:46] Courtney: Yeah. And that was, you know, definitely before I knew what was happening, I didn't know what that feeling was I was feeling. I was sitting down. So I was like, clearly I'm not gonna faint. And then I did. [00:30:58] Jill Brook: And when you woke up, what was it like? Was everyone laughing at you? Were they [00:31:02] Courtney: no, my God. They were terrified you know, considering calling an ambulance. But, you know, once I woke up, I was fine. [00:31:09] Jill Brook: Did everyone still eat the pizza? [00:31:12] Courtney: That I don't remember. [00:31:13] Jill Brook: So I just have a couple more questions. What do you wish more people understood about POTS and or EDS and or MCAS? [00:31:24] Courtney: I just wish that they just knew what they were in general, you know, it would be so nice if I could just tell somebody that I have those conditions and it be just as well understood as, you know, diabetes or depression. You say one of those conditions and they're like, ah, say no more. But instead, you know, it's, it's the same spiel every time and I don't necessarily wanna do it every time. [00:31:48] Jill Brook: Yeah. Is there anything you'd like to say to your fellow POTS patients who are listening? [00:31:53] Courtney: Yes. I just wanna say that I admire each and every one of you as well. Especially, you know, partners too. This is not an easy process whatsoever. It's very tiresome and stressful and just know that I see you. I see what you're going through. And I admire you for it. [00:32:16] Jill Brook: Oh, that's beautiful. Well, Courtney, thank you so much for sharing your story and all your insights with us. We so appreciate it and I know that everybody listening is wishing you all the best going forward. [00:32:28] Courtney: Thank you for having me. [00:32:30] Jill Brook: Hey, listeners, I 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.

Other Episodes

Episode 62

May 24, 2022 00:25:27
Episode Cover

E62: POTS Diary with Patty from Massachusetts

Patty is a respiratory therapist who first developed POTS symptoms in her 50s. Big changes ensued - new job, moving to an apartment, and...

Listen

Episode 22

October 26, 2021 00:45:32
Episode Cover

E22: POTS Diary with Dysautonomia Support Network President Brooke O'Shea

Brooke O'Shea is the current President of the Dysautonomia Support Network, and mother of two daughters with Ehlers-Danlos Syndrome and one with POTS. This...

Listen

Episode 189

January 23, 2024 00:49:51
Episode Cover

E189: Functional Medicine Nutrition with Megan Barnett

This is a conversation between Jill Brook and Megan Barnett discussing the relationship between nutrition, gut health, and complex health conditions like POTS and...

Listen