Katie from Ohio, who developed POTS as a teen and a more severe form after COVID

POTS Diary with Katie [00:00:00] Jill Brook: Hello, fellow POTS patients and peachy people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries and we are speaking today with the lovely Katie. Thank you so much for being here with us today, Katie. [00:00:16] Katie: Hi, Jill. Hi, people at home listening. Thank you very much for having me on your podcast. [00:00:22] Jill Brook: So let's start with some basics. What is your age and where are you? Where do you live? [00:00:27] Katie: I am 37 and I live in Cleveland, Ohio. [00:00:33] Jill Brook: Ah, okay. And tell us about you. What are you passionate about? [00:00:37] Katie: I feel like this is like the job interview question that like I always freeze up on. [00:00:41] Jill Brook: Do you want me to ask you about your faults as an employee? [00:00:46] Katie: Like what, what things can go better? No. [00:00:48] Jill Brook: Too much. You're too much of a perfectionist. [00:00:51] Katie: yeah, that sort of stuff, for sure. I am definitely someone who is very caring and passionate about a lot of things. I try to have an upbeat attitude and try to find humor because in my mind, laughter is always preferable to tears. So that I think is my personality in kind of a nutshell. Things I am passionate about reading. I love to read. Good gluten-free food. I have about a thousand food allergies as All my family and friends will tell you. And so that's another big passion. And then new area in my life that I'm trying to work on channeling some passion into is doing sort of patient advocacy sort of things like this podcast and trying to help as many people as I can on their own particular healthcare journey. [00:01:40] Jill Brook: Wonderful. So I have to ask you about all of those things. What is the best thing you've read lately? Any good recommendations? [00:01:48] Katie: So I just finished the most recent book in the Stephanie Plum series, which is by Janet Ivanovich. And she comes out with one book every year, and it's always out sometime around October, November. And I literally just finished it yesterday and I believe it was the 29th book in that series. So there are 28 others. If anybody likes sort of light, fluffy, cozy, mystery sort of stuff. [00:02:22] Jill Brook: Oh, that sounds nice and that sounds good for one's adrenaline level. [00:02:25] Katie: Yeah. [00:02:26] Jill Brook: If one is needing light, cozy, fluffy things instead of the violent, scary things. [00:02:35] Katie: I mean, she, well, Stephanie Plum is like the world's worst recovery agent, so like bail bond sort of stuff. I said cozy, but there's also a little bit of that sort of stuff in there too. Every book is a mystery and all kinds of things go wrong. It's a trophy romance. They're deliciously fun. [00:02:56] Jill Brook: Okay, so speaking of delicious, I have to move on. You mentioned you're into food, but you have a thousand allergies. What is your favorite thing that you can eat with no bad consequences? [00:03:07] Katie: Ooh, that's a tough one. I wanna say white rice. Because that's like the easiest thing to eat. And I honestly generally have loved white rice since I was a kid. I was always at the Chinese restaurant. I was the white rice girl and not the fried rice girl. But, [00:03:24] Jill Brook: Oh, good. Okay. So you're not bored with it. You're delighted by it. [00:03:27] Katie: No, I'm delighted by it to this day for some strange reason. And. We'll also go with Snyder's gluten-free pretzels because we need our salts and they're good for the belly. And I have not yet gotten sick of them. [00:03:41] Jill Brook: Oh, good. Okay. And last one, you had mentioned patient advocacy as a passion. Do you wanna talk anymore about that? [00:03:49] Katie: So patient advocacy. I have been I guess fortunate enough to have experienced Having several patient sort of mentors in my journey with, you know, POTS and I have other chronic health conditions too. And so now that I have been down this road for so long I am so glad to see all of this new attention that POTS is getting and I'm hoping to be able to connect with more people. To just kind of be a support and help people get stuff figured out because I have been there when you don't know what's going on with your body, but there's obviously something that's very wrong and I know what that feels like and I feel like I was given this body and this knowledge for a reason, and I would really like to be able to use that to help people. [00:04:41] Jill Brook: Oh, that's beautiful. So I know that before we started recording, you had mentioned that your POTS journey had taken a big turn in the last year, and it's almost like you've had POTS twice in two different ways. Do you wanna talk about that? [00:04:58] Katie: sure. So I am 37. As we've said. I started having POTS symptoms when I was in my late teen years, so 18, 19, that sort of age. And then I didn't get diagnosed with POTS until I was about 23. So I went through the whole rigamarole of doctors saying, oh, it's probably just anxiety. Oh, you just need to eat more frequently. Like I got every single Line that women are. And of course now some men too are told to dismiss them and all of their, their health complaints. I got every single line. And nobody was super duper interested in actually figuring out what was wrong with myself. And I was also Fortunate enough that when I was younger and healthier and able to work, I went to school for respiratory therapy. So I definitely had that background sort of knowledge to know, okay, well yeah, something is definitely not right here and this is happening when I'm not feeling anxious, I'm feeling more anxious because you're not listening to me, sort of thing going on. [00:06:14] Jill Brook: And you had a very hyper adrenergic presentation at that point, right? [00:06:17] Katie: Yes, I did. It is still off the charts. My labs, they were, I mean, my doctor looked at me and said that I was, you know, a top 10 club of highest adrenergic responses he's seen. [00:06:30] Jill Brook: So can you say what that feels like for people who are wondering, what is this hyperadrenergic thing? [00:06:35] Katie: so for me it feels like my body is in this super excitable state, like my heart rate is pounding. Sometimes I'll get dizzy and lightheaded, and sometimes I'll even cold sweat. My husband likes to joke about me being clammy, which, you know, laughter over tears, that's a theme. And it just feels kind of like your body is all revved up and ready to go. I don't know, like if you were a car, like you're gonna go in like the Indie 500 and for no apparent reason. You're just kind of, you know, sitting there on the couch. And then if you try to do anything with this, this hyperexcitable state your body is in, instead of trying to actually do something like run a marathon with that energy, that doesn't happen because my heart rate shoots through the roof and my blood pressure will either go up or down. and then, you know, we get into fainting or near fainting. I've only fainted like full fainted a handful of times. I am kind of one of those people who are very good at knowing when I'm going to faint and then being able to do things to stop that from happening. And when I say Hyperexcitable state, I have an extremely good example of that. For the longest time, and it still happens occasionally. If I am sitting in the living room, watching tv, reading, doing whatever. When my husband comes home from work, I will not hear him walk up our stairs or across our porch, and the very first thing I hear is him pulling open our screen door, which is loud, and that will startle me. And like, what are those things where you just grab your chest and you take a deep breath and you're like, like a jump scare in a horror movie. But it's not, it's just my husband coming home from work. [00:08:20] Jill Brook: Yeah. Okay. So that's pretty hyperadrenergic. What else should we know about your first version of POTS before you tell us how it changed? [00:08:29] Katie: So yeah, at that time I finally was able to get diagnosed. [00:08:34] Jill Brook: Did you have it pretty well under control. [00:08:36] Katie: did have it fairly well under control. It was still a very big limiter of my physical capabilities. I very much had a, a very strict routine I had to stick to. [00:08:47] Jill Brook: you working? [00:08:48] Katie: I was working. I worked for a long time after diagnosis. I didn't work as a respiratory therapist for much longer. I worked as a respiratory therapist for about another year, year and a half. And then I went down to part-time employment in retail. And I worked for a local craft store chain that is now defunct. But it was simultaneously, that was one of the best experiences of my life. And then there was the Christmas season. [00:09:12] Jill Brook: Okay, so now tell us about your COVID. [00:09:15] Katie: Okay. So I did stop working in 2018 just from various health challenges presented themselves even further. I have a couple autoimmune conditions and that's just how life goes for some of us sometimes. And so I got COVID in December of 20 21. And I am immunocompromised because of the medicine intake for my autoimmune conditions, and I was extremely strict with following my protocols. Like I didn't even leave my house for a week before I got sick. Cause I knew that there was so much COVID in our area. So I like to say that COVID said that you can run, but you can't hide and knock down my front door because I still don't know where it came from. [00:10:00] Jill Brook: Severe case of it? [00:10:01] Katie: surprisingly, no. It took me The 10 full days to actually test positive, and they blamed that on being immunocompromised. And then once I tested positive well, we had also started supportive measures like, because there was so much COVID in the area and my symptoms were dead on for mild COVID, but I was fortunate it was not severe. In terms of like, I wasn't in the hospital. I wasn't on oxygen, you know, I didn't end up in the I C U. All things I am extremely fortunate and grateful for. I slowly got better. And I can tell you the exact day that the POTS flare up started, because that was the day that I was like, okay, I have to be seen somewhere by some doctor, because I woke up that morning and I was hit with a wall of that sort of adrenaline that we talk about and then, I rested and I did the things that you're supposed to do to get better from COVID. And then it took me like a solid two months to start feeling kind of normal. And then when that happened, I had a very mild very mild, like post COVID rash that was on my face. And then two weeks after that, I actually had a very mild case of the shingles. It was the second time. It was very, very mild, but after the shingles went away, then my POTS decided that it just wanted to flare up with kind of. [00:11:31] Jill Brook: A vengeance. [00:11:33] Katie: Yeah. It was like a dragon, like it was breathing fire. Nobody could really figure out why that happened. And it has taken a very, very long time for us to sort of get this under... I don't wanna say under control, but just like getting back to that place of like predictability in my life. And to this day, here we are. It's November, it's how many months later? I'm still here. Yeah. Yeah. So I was definitely told I have long COVID and I was fortunate enough to actually be seen in one of the long haul COVID clinics and then an integrative medicine COVID clinic. I didn't know what integrative medicine was until this happened, but integrative medicine is really interesting where it looks at like the four pillars of health to restore kind of health to an individual. And so they look at sleep, stress management, diet and physical activity. And also look at I don't wanna say like more natural things, but they do medicine and supplements. So that's really cool. And I learned a lot in that class too. I didn't think that I would after being so involved in healthcare for as long as I have been, I didn't think I would learn very much from them, but I did. [00:12:54] Jill Brook: So, is your POTS still like a dragon or is it calming down? Is it maybe more of just like a really hyper golden retriever at this point, or... [00:13:03] Katie: somewhere between golden retriever and a dragon. I will say we had to quadruple my beta blocker dose, which is absolutely insane. I, I am very, very, very strict with sleep schedule and at some point I wonder how much have things improved or how much am I just getting better at knowing what the new situation is? I am very happy though that it seems like it has been a minute since I have had to just like say to my friends, I'm done for today. I can't do anymore. So probably a mixture of both and I am very pleased with that. [00:13:43] Jill Brook: but that sounds rough, that here you had worked so hard to conquer it once and then it came back with a vengeance, and now you're working even harder it sounds like. Yeah? [00:13:55] Katie: Yeah. And that's partially what made me wanna really get into the patient advocacy half of it, because I had been through all of this already. I had already done all of these things, and then now here I am redoing some of these things. And it was just from the workup that I had the first time, you know, over a decade ago to how it was approached the second time. It was a very interesting thing to watch. And to be part of, to have that sort of, I don't wanna say old dogs, can't learn new tricks sort of thing, but it was, on one hand, it was very interesting for me. [00:14:38] Jill Brook: It sounds like maybe you got to experience the healthcare system twice for POTS once, like 10, 20 years ago, once recently. How did they compare? How would you rate the improvement or progress, if any? [00:14:51] Katie: I have a neurologist, an autonomic neurologist, who manages my POTS and migraines and, you know, all the other assorted neurological fun that comes with POTS. And they really wanted me to be seen by a specific cardiologist at the Syncope clinic at the Cleveland Clinic. Before I could get in to see him, cuz he was insanely booked, just beyond crazily booked because of how many people are having POTS and POTS like symptoms from long COVID that I got in with just a general cardiologist and even with a diagnosed, well-documented history of POTS. that had been managed. I still got the statement from him. Why are you wearing your Apple watch? Watching Your heart rate is what's making you anxious and that's what's what's driving up your heart rate. Yeah. [00:15:55] Jill Brook: Okay, so that does not sound like a high grade for the... [00:16:00] Katie: thankfully when I did get to see the doctor in the Syncope clinic, it was a completely different story. And he was absolutely amazing and it was his input that has kind of allowed me to build my strength back up to where I am currently, but, It was just very interesting to me to have that happen again after all of this time. I was not expecting it. [00:16:25] Jill Brook: Were you better fortified against stuff like that? Because I almost wonder if I were to completely do the whole thing again with doctors, knowing now what I know, if I would be able to be smarter and probably a bit sassier and more angry , but I'd stand up for myself better. [00:16:44] Katie: I wanna say yes because we ended that appointment with him doing some tests that he had not really thought that were necessary, including a Holter monitor of all things. Because I was essentially like, prove it. If it's my watch that's making me anxious and making my heart rate go up. Let's see what the Holter monitor shows. [00:17:06] Jill Brook: Gosh. Well I'm so sorry that you have been through this twice. Could we do a speed round and take advantage of your collective experience? [00:17:17] Katie: Sure. We'll try. [00:17:20] Jill Brook: Okay, perfect. We invite you to say the first thing that comes to your head, whether it makes sense or not, cuz we know your brain's not getting all the circulation. [00:17:28] Katie: That is definitely a long haul COVID symptom of mine for sure is there is more of a disconnect between my brain and my mouth. And sometimes it's harder to get the things I actually want to say out. [00:17:41] Jill Brook: Okay, well that will make this exciting! [00:17:42] Katie: Yeah, [00:17:43] Jill Brook: we'll see what comes out. what is your favorite way to get salt? [00:17:47] Katie: Ooh. The speed round is not very speedy. I have a lot of ways like to get salt. So I think that's why I was struggling there to pick one quickly. If I know that I'm going to need a lot of salt, I prefer the The salt stick, the Vitassium. If I know that I'm just like, maybe I got overheated, then I like the liquid IV. And then going back to rice, there's nothing I like more than white rice with some salt and garlic powder pepper. then, you know, some kind of other entrees to go with it. But I'm a big, let's get our salt from the salt shaker instead of other ways of getting salt sort of person. [00:18:31] Jill Brook: Okay. Very nice. What is your favorite time of day and why? [00:18:36] Katie: I like the hours of like 10:00 AM. 2:00 PM and I think that's when I have like the most energy, I'm awake and my joints aren't all stiff anymore. And you know, I've had breakfast and lunch and I like that part of the day. [00:18:56] Jill Brook: What's one word that describes what it's like living with chronic illness? [00:19:01] Katie: Interesting. [00:19:03] Jill Brook: What is some good advice anyone ever gave you? [00:19:06] Katie: No, this is advice, but I always come back to, and I believe it's a Maya Angelou quote. People won't remember what you said or did, but they will remember how you made them feel. And so I guess I always try to treat people with that in mind. So I guess it's Maya Angelou's advice to me. [00:19:24] Jill Brook: What is something small or inexpensive that brings you comfort or joy? [00:19:30] Katie: Kind of a weird one, but I didn't have a lot of stuffed animals as a kid because of asthma. And so now I have a build a bear, Lord of the Rings Frodo. And he is inexpensive and small, and he brings me lots of comfort and joy. [00:19:45] Jill Brook: Right on. What is something you're proud of? [00:19:49] Katie: You're hitting with like really deep stuff and you want me to come up with them quickly and that is not easy for me to do. I am proud of the fact that I worked as, as long as I did with as many chronic health problems as I have. I owe that very much to my support system. I am incredibly fortunate that I have been blessed with just the most amazing support system anyone could ask for. My husband, my family, my parents, my in-laws, my best friend, several best friends. I couldn't do what I do without them. [00:20:28] Jill Brook: Aw, that's wonderful. Okay. What is the toughest thing about POTS? [00:20:33] Katie: the unpredictability. You can wake up and think you're gonna have a great day, and then, you know, as soon as your feet hit the floor, so does your blood pressure, and then you're like, all right, we're just gonna take it as it comes today. I think that's probably one of the hardest things. And then like the, not knowing, like, so for the pandemic, I couldn't go out in crowds. I wasn't even allowed to go to, like, to the grocery store, the movies if I could help it. They really told me to do my best at trying to avoid that sort of stuff. And then, You know, now that the pandemic's over and I'm allowed to sort of be smart about integrating back into society, like one of the hardest things is making plans and then not knowing, am I going to be able to actually do this the day that it comes time to do. In Cleveland, we have a very large theater district. We actually have one of the largest in the country outside of New York. And so we've been looking at getting tickets to go to see some plays, and I'm like, fingers crossed. Fingers crossed. We're gonna make Hamilton happen. [00:21:39] Jill Brook: Oh. [00:21:40] Katie: We're gonna, we're gonna make it happen somehow. I'm not missing Hamilton. [00:21:43] Jill Brook: Excellent. Oh, good luck on that. Okay, I just have a couple more questions. What do you wish more people knew about POTS? [00:21:52] Katie: That it's not anxiety. I think that's like the number one stigma. Is that where a bunch of nervous nellies and when your body has way too much adrenaline, yes, you are going to be nervous about certain things. That's just kind of how it works. [00:22:06] Jill Brook: And last question, is there anything you'd like to say to your fellow POTS patients out there listening? [00:22:11] Katie: So I have a T-shirt that I got, and on it, it says it doesn't get easier. You get stronger. And I'm pretty sure that that was part of like, someone's like active wear line, like whatever store I bought it from, and they're talking about exercise. And in my mind, that really hit home with POTS because it does not get easier. I can tell you that. I have been through it twice now. Does not get easier, but you do get stronger. Your ability to handle things and be who you are still and not lose yourself, you get stronger. And so that's what I would say, especially to all of the newbies out there. It won't be this big scary, uncharted place forever because you will get stronger and you will learn what you need to learn to take care of your body. [00:23:12] Jill Brook: Well, Katie, thank you so much for sharing your story and your insights with us, and I know that everybody listening is wishing you only the best going forward. And I really appreciate your time today. Thank you. [00:23:25] Katie: Thank you so much for having me, Jill. [00:23:27] Jill Brook: And 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.