Episode 50 – POTS Diaries with Kelsey from PA

00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive. This is the Standing Up to POTS podcast.

00:29 Jill (Host): Hello fellow POTS patients and fabulous people who care about POTS patients. I'm Jill Brook, your dizzy host, and today we have an episode of The POTS Diaries where we get to know somebody in the POTS community and hear their story. So today we are speaking with Kelsey who kindly agreed to share her story to benefit all of us. Kelsey, thank you so much for joining us today.

00:53 Kelsey (Guest): Thank you for having me. I'm excited to share my story and what I've been through.

00:58 Jill (Host): Can you start by giving us a few basics like your age, where you live now, where you grew up, what you do for a living?

01:06 Kelsey (Guest): Yep, so I'm 31. I'll be 32 in November. I’m from Pittsburgh, born and raised. I'm married and I have two little boys who keep me very busy and I am a physical therapist. I work in home health, so I go to people's homes.

01:21 Jill (Host): That's great. So how would your friends or family describe your personality?

01:27 Kelsey (Guest): Even now, because not too many people know that I have it, I would still say energetic, you know, I like to do or active, so active, energetic, and I think caring – I think it comes with my job and the nature of my job through, so just caring and thinking of others, which sometimes I have to turn around and think that for myself.

01:46 Jill (Host): So how old are your children?

01:48 Kelsey (Guest): I have a four-year-old little boy and a 15-month little boy.

01:52 Jill (Host): Ah, OK. So, good thing you're energetic.

01:53 Kelsey (Guest): Yes! [inaudible]

01:57 Jill (Host): Can you give us a snapshot of what your life looked like in about the year leading up to when you think any of your POTS stuff began?

02:09 Kelsey (Guest): In hindsight looking back, I think POTS started when I had a concussion in 2012, which I was a senior in college. And I was trying to think of this when I listened to the other people sharing their stories, you know, what was my life? I was active all through high school. I played sports soccer and volleyball, and you know, many teams and even in college I don't remember any issues. I do have celiac disease. I was diagnosed when I was one. I have to be diligent or I get sick. So that was never really a thing and then I had a very bad concussion in 2012 and after that, you know, you go through the concussion protocol and I started having tremors in both of my hands. And I just attributed that to being a concussion, but before that part I would say that's when things started to change a little bit. But even up until this last year when I was diagnosed with POTS, I was still functioning pretty well. I just thought I had weird illnesses, but I was still active and energetic and I didn't feel the symptoms as I do now.

03:13 Jill (Host): So, you were a senior in college – is that right?

03:17 Kelsey (Guest): Yes.

03:18 Jill (Host): Do you mind sharing how you got a concussion?

03:20 Kelsey (Guest): Yeah, so my family - we live in Pittsburgh - so we have Seven Springs and Hidden Valley near us, and they’re a big ski resort. And I learned to snowboard young. My parents ski, my brother’s a snowboarder, my now husband, he snowboarded and we were there and we had just started down a hill. When I say we just started, it wasn't, you know, some catastrophic fall. I kind of just caught an edge, I guess, and fell forward and I remember bouncing my head down. So, I must've went down and back. And, you know, I got up. I made my way down the mountain, and then as the hours went on, things started to change and then one thing led to another. And it took a while. I was accepted to Chatham for physical therapy for grad school. It took everything I had to graduate from Pitt.

04:06 Jill (Host): What were the symptoms you were having after the concussion?

04:09 Kelsey (Guest): Like the dizziness, lightheadedness, room was spinning, brain fog, tremors - and a lot of that had subsided as I did physical therapy and vestibular therapy, and things got a lot better. It took me quite a while - probably through the summer of the following year - to feel more like myself. But those tremors never went away, headaches never went away, and I just kept attributing that to I had a neck injury and that's what it had to be. Looking back now, I got on my POTS path I would say then.

04:41 Jill (Host): So, then what was it like getting a diagnosis? How long did that take and was it easy or hard?

04:48 Kelsey (Guest): It feels hard when you're in it but I think from what I'm reading, I'm lucky that I got a diagnosis more quickly. I started having PVCs that I could feel last November/December, and with Christmas and the holidays and two young kids I thought OK, I'm just gonna put it off. I'll deal with it in the new year. [Transcriber’s note: PVCs are premature ventricular contractions, or extra heartbeats that originate in one of the ventricular chambers of the heart.] So that led me to a cardiologist. You know, I had never seen one. They could see this - I've had more heart monitors than I can count. They saw the PVCs, had my echo. She said, “OK, you're having PVCs, but nothing to worry about.” So, I let that go and my kids were getting a bath and I was carrying laundry up the steps and meet my husband up there to help. And all of a sudden I thought, “Oh my gosh, I’m going to pass out.” Being a PT, I'm like, I gotta get some blood flow back to me. So, I laid down and put my legs up the wall and I could feel like the flusheness kinda improve. And I called the next day and they said, “Oh, OK you're feeling it. We're gonna start with Toprol. [Transcriber’s note: Toprol is the brand name for metoprolol, a beta blocker commonly prescribed to POTS patients.] That didn't work for whatever reason that landed me in the ER. My heart rate was like [inaudible]. That was probably all January to March. I was kind of riding the wave of, Oh, it's a heart issue. You're feeling PVCs, you know, try this, try that.

05:56 Jill (Host): For people who don't know what a PVC is, do you mind explaining what it is and then also maybe what it feels like as a patient?

06:04 Kelsey (Guest): Yes, so it's an extra beat, essentially. A lot of people have PVCs, from what I now know, and have these extra irregular beats, but they're not detrimental to my heart, to any structure of my heart. So what they are, though, I could feel like a flutter and sometimes they would be a little flutter and it would pass, and then other times I could feel a few in my chest. And so that's what made me make the original call.

06:28 Jill (Host): So, it sounds like during this time, you lived a lot of life - you graduated from college, you went to school for physical therapy, you got married and you had two kids. What was that all like? I guess we should break it down. Tell us about physical therapy school as a person who's kind of having all this other stuff going on at the same time.

06:48 Kelsey (Guest): Hindsight, looking back, I'm a diligent student. I like to learn, but it was always almost like a brain fog. I was seeing neurologist then which was more related to the concussion aspect. Tried a few different medicines and some would just make me more foggy, and I feel like I struggled in terms of test taking. I knew what I was taking in, but then when it would come like that brain fog to put it all back out on my test, I struggled. Looking back, I kept saying like, “What? I know I know the info. Why is it not processing as quick?” And I think that had to have an impact on school, in general. And to top it off, after school we got married and then I thought things were good and decided I had these weird illnesses and got pregnant with my first and struggled during the pregnancy. And we hit 20 weeks and in and out of the hospital with early contractions and they kept saying, “You're dehydrated,” and I kept saying, “You know, I'm drinking. I've never drank this much fluid in my life.” And same thing happened with a second baby, and he actually was born six weeks early and spent a little bit of time in the NICU because I think my body just was not healthy or, you know, not functioning as well as I thought it was.

07:57 Jill (Host): Wow, OK. But you made it through all of that and then you got your diagnosis, and have things gotten better now that you know what's actually going on with you?

08:08 Kelsey (Guest): I would say yes and no. From a mental aspect, I feel like I can make sense of it all. You know, I was always worrying I would be seen in ER for chest pain and all these things that were unexplained. And now after I finally got to neurology and more of a POTS specialist, it all kind of added up. Health-wise I was doing better in terms of with medicine and managing symptoms, but just in this past week I'm learning of what is they refer to as an October slide and I'm having my first POTS flare, which was eye opening to me because I didn't know how terrible you could truly feel.

08:44 Jill (Host): So, do you mind sharing how were you feeling a couple weeks ago before your POTS flare into the October slide, and how are you feeling now that you've had it?

08:57 Kelsey (Guest): Yeah, I take [inaudible] and midodrine and I was doing pretty well. I mean, I was still exhausted by the end of the day, but my biggest thing - and what pushed me to find more answers - was, you know, I have two kids and I do work and I had to find something that made me function better. I would be exhausted by the end of the days and I would have mornings of tachycardia and the days weren't great, but I was functioning and I felt like I could be a mom and do better. Something happened - I would say a week and a half ago - I noticed I never had light sensitivity. I had read about it but not a thing. I was driving home at night and we were on a highway coming home and my husband said, “What's wrong?” I was driving and I started like tremoring and I could feel my heart rate dropping and coming up and so we actually pulled over and he drove home and I kept saying, “The lights or something is off.” I would say that was probably two weeks ago and then over this past week I noticed my blood pressure started going up and I'm a chronic low blood pressure person - I take midodrine. It was going up and I just kept saying, “This weird,” and I felt like now the doctors are saying its pre-syncope dizziness, and that was kind of the best way to describe it. And Friday, Saturday, Sunday and by Sunday I ended up in the ER, I was tachycardic, tremoring harder to control my body, had blood pressure. Now I know it was becoming hypertensive, so that's why I was feeling this presyncope issue from too high possibility passing out, which I didn't know. My diastolic number was quite high, so that is good and bad, because now we dropped down on the midodrine but I'm still living through these changes. And today is better - each day has been a little bit better - but it's just not where I was, I would say, a month ago.

10:48 Jill (Host): So, a lot of patients when they go to the ER, they seem to kind of have mixed experiences.

10:55 Kelsey (Guest): Yeah.

10:56 Jill (Host): What was yours like? Were they able to do something to help you? Did they understand your diagnosis? Was it helpful?

11:02 Kelsey (Guest): A little bit of both. The first physician who came in was internal medicine. He had seen one POTS patient before. And he was understanding, and we wanted to kind of roll out some adrenal gland things just to be sure. And he was really gung-ho about, you know, “Let's make sure this is it. Let's get you the right thing.” And he left the room and he came back. And he talked was attending and the attending was like, “She has POTS. Give her some fluids, so be it.” And that's kind of where it was. My husband and I were saying we were really excited because I thought you know, maybe I really will start to feel better before we leave here. And then like change of heart from the other doctor. The only good part that came out of it was I found out I was hypertensive, so we at least could make a medication change through that. But beyond that, yeah, it's a fear, I think, that POTS patients crustaceans have, because no one really understands. Even here, they said, “Who do you follow with here?” And I said, “ I follow with the Cleveland Clinic, you know, because they're the ones who understand. Do you know anybody around here?” And he's like, “I don't.” Because it's hard, I think, for people. I'm lucky I don't live that from Cleveland, but, you know all across the US and travel and the cost of that for people to get there is quite a bit.

12:11 Jill (Host): Yeah. Did you say that you have been able to see a POTS specialist now? And can I ask, what did they have to say about the October slide?

12:22 Kelsey (Guest): Yeah, I was at Cleveland Clinic. You know, Facebook has its good and bad things, but when I was diagnosed, you know, I'm all about getting all the info I can. And there's POTS groups on Facebook and everybody kept recommending I see Kyle Shannon out of Cleveland with Dr. Wilson and 'cause I [inaudible] neurologist here and cardiologist for months out and I thought, I'm just gonna call. I don't know how I was so lucky I got a virtual visit two weeks later. And that was really what started to help me. I did message him just the other day and said I started having adrenaline rushes at night. That was also something in this POTS flare that I never had. Two nights in a row I had it and so on yesterday morning I messaged him and asked about what are these surges? This is new for me. And he didn’t use the words October Slide, but he said the change of seasons - POTS patients can be very affected by these, which that was new. I didn’t know that.

13:11 Jill (Host): So, how does a nighttime adrenaline surge feel to you, and what do you do when it happens?

13:19 Kelsey (Guest): Well, the first night I panicked a little because I thought what is happening? It’s out of a dead sleep. It woke me right up. My heart rate – I was tachycardic. My blood pressure - I couldn't get it down. So I eventually just – I usually take Cardizem at 6:00 in the morning and it was 3:00 and I finally - by 4:00 I took it and hoped that it would bring it down. [Transcriber’s note: Cardizem is the brand name for Diltiazem, a calcium channel blocker and antihypertensive medication.] Nothing really helped me that day. It was just more or less time. Again, thanks to these Facebook groups, I was researching the next day, you know, what did people do? And when it happened the following night, I did myself a favor and did not take my blood pressure because I know it's probably up and I want to make myself more crazy. So, I did some like deep breathing, some like muscle contraction all over, I was reading, and then elevating my legs up on my headboard is what eventually, and within two hours it came back down. That's what allowed me to go back to sleep. But the second night, you know, your body is just so on edge, I guess. Our son came in and he had to go the bathroom, and it woke me. And normal, I would just wake up and would be fine. And that just set the surge right off the second night.

14:23 Jill (Host): So, do you think that your knowledge of physical therapy helps with any part of POTS?

14:29 Kelsey (Guest): I do. I think it helps me, you know, break it down and understand. I went out to the Cleveland Clinic in June to do their exercise stress test with the exercise physiologist and that was eye opening to me. I couldn't finish the test. I only made it 7 minutes. My legs never hurt so bad. I performed these tests in school and I thought, Oh my gosh, who am I? What happened to me? The physician came in after that, and they were very upfront, and I think that's what's good to know for POTS patients is you kind of have to forget who you were. You can't keep comparing yourself to who you were before the POTS diagnosis. And I had a lot of emotion sitting there with them saying that because I was so excited that someone was helping me, I was going to have a plan, but sad in the same sense because who I was before that and all I could do, you know, I just got off a test that I failed, I was kind of like overwhelmed by realizing where I was physically and health wise it was just a lot. But I think being a physical therapist now has showed me, you know, and I can break it down and understand where I have to start, where I'm going, and these building blocks to get me back to hopefully where I want to be.

15:37 Jill (Host): So that's a great way to think about it is that you're not where you are forever. You just have to build back up.

15:44 Kelsey (Guest): Build back up. And they were very upfront, Kyle was when I had my meeting and my first visit. He said, “Look, POTS patients. It's frustrating, like you gotta hang in there and just stay the course,” and at the time, I'll be totally honest, I thought, OK, it's gonna be fine. And it is not long term, you know you look at yourself and am I better than where I was in April? I am. But the day to day, sometimes just tough.

16:08 Jill (Host): Because it's just so slow? The progress?

16:11 Kelsey (Guest): Mmm hmm. And someday symptoms are just worse than others and you kind of have to ride the wave. My family, my husband and my parents - they're the ones who are good at putting it into perspective, like “Kelsey, six months ago you couldn't have done this and look what you did.” So, you know, it's good to have those reinforcements.

16:28 Jill (Host): Do you mind giving some specific examples of things that you could do? I guess, maybe there's like three time periods - there's before before in college, there’s a year ago, and there's now. Do you mind sharing?

16:44 Kelsey (Guest): I think before college or even in college, I did whatever. I ran, I exercise, I could go to sleep late and wake up early and not think twice about it. I mean, I like water, but I never watched how much liquid I drank. I just did, I think whatever I wanted without thinking. A year ago, probably like right before the baby even, I still did pretty much whatever. I would tire easily and I had hard pregnancies but I still did a good thing. Now I am diligent about water. I struggle with dizziness and that's what I'm still working through the most. So that is what I think limits me. You know, if I'm not feeling so well, I work, and then I come home. And before we have to pick up the kids or I'll just say to my husband, like, “You drive.” I can still go and do it, but I just don't feel as clear. Now, I don't feel like I have the freedom or ability to just go and do. I have to be way more calculated in my days.

17:37 Jill (Host): Can you tell us what it was like at your wedding with POTS?

17:42 Kelsey (Guest): I mean, I think of my life then, I always had headaches. I always thought they were sinus infections, you know, that sinus pressure. Since starting Cardizem and stuff that has disappeared. So, that's a plus. I would think during my wedding or around that time I was probably just exhausted, but I could go and do and then maybe crash after. I remember the next day after the wedding being so tired, and that's what would happen like just not your normal fatigue, I guess.

18:09 Jill (Host): Yeah. So nowadays, do you have any hacks or routines or things that help you get through the day?

18:18 Kelsey (Guest): Up until this last week, I thought I had it down pretty good. And what I would do then is I keep water beside my bed, and I have probably 16 ounces before my feet even hit the ground, which I seem to help. On days that I'm not up even earlier for work, I keep my medicine up there. That way, you know, I can have it in the morning, let it kind of kick in before I come downstairs. I'm probably tried every drink on the market. I like Nuun tablets. I use those quite often, but I think the exercise is the biggest thing for me. Some days, especially lately when I'm in this flare, I do not want to get on the bike. I don't. But I know that has helped me significantly since I started it in June. I'm coming down on certain meds and I have to remind myself I'm still flaring, but I've come down on meds where I was and I'm still exercising and that exercise component, I really believe, is making such a difference.

19:14 Jill (Host): So, are there any people in your life that help you deal with this?

19:18 Kelsey (Guest): I mean, my husband. He’s a saint. And my parents - they probably know the most, but my husband picks up the pieces, especially this last couple days where I'm not very good at not helping. I want to help. I have two kids, I want to be involved, but he'll just say like, “You gotta go to the couch.” You know, he can kind of tell when things aren’t as good, but they probably help me the most, or just remind me of where I was and where I am now, which I think is the most helpful because it's hard to see day to day when you just don't feel good.

19:48 Jill (Host): Do friends or coworkers know about this, and does it affect your relationship at all?

19:54 Kelsey (Guest): My best friend knows and my boss knows and their - he's great. I think I should probably share it more and I feel like this is almost like the first step of people understanding and what made me do this. Like, I hear a lot, “Kelsey, but you look so great. Oh, she must be doing so good, you know, she's out here with their kids,” or you're at a birthday party and, “Oh, you're doing so good.” But people don't know. Like, as soon as I hit the car Oh my gosh, or you know, I crawl up this step sometimes because I can either be so tachycardia or my legs can be so tired. So I know about chronic illnesses from my profession, but truly now I just have a better understanding of maybe how frustrating it is that you look great on the outside, but on the inside there's so much going on.

20:26 Jill (Host): Well, and I also think that some of us - it's almost like the last thing to go is our voice and our mannerisms, because you not only look like a person who's energetic and healthy, but you sound like one, and I think I'm the same and a lot of other POTSies that I talk to are the same, and so I can see how people would think it's hard to imagine that we crash when we were just so animated. [Laughs] And sometimes I think maybe that's just muscle memory from before.

21:05 Kelsey (Guest): It is so true, and I think that's - I mean, for instance, I was in the middle of a POTS flare. I didn't know that’s what's happening, but we were at a wedding Saturday. And you would have never known, you know. You have your nice dress on and your hair looks great. And truly, I'm like, Oh my gosh. I don't know if I'm going to make it, you know. And you still want to keep up those social interactions and you want to do, it's just sometimes it really makes you feel so terrible. It limits things.

21:30 Jill (Host): So what do you think gives you the strength to deal with all this? Like, do you have anything that you rely on to help you cope?

21:38 Kelsey (Guest): I mean truly, I was thinking this too the other day. I mean, my kids. I want to go and do for them. So, it's my motivating factor that when I don't want to get on the bike or things aren't as good, I just want to feel healthy and feel normal to go and do everything. I know we can do, it's just maybe modified right now.

21:59 Jill (Host): So yeah, do you mind sharing - what are examples of things or activities that you can just really genuinely enjoy these days that don't feel like they've had to change because of POTS?

22:10 Kelsey (Guest): I feel like everything has changed to a point. I would just say that even little things like we have a good neighborhood for a walk. Even like yesterday, my husband’s like, “Alright. Well, let's just go and walk.” We enjoy that. We. take the dog. So just maybe not doing as many things, I would say, in a day, but we still can do what we want. Just not as many things in a day.

22:33 Jill (Host): So, shout out to your husband. I love supportive spouses, yay! At what point in your health journey did you meet your husband? Were you like this when you met him, or have you dealt with this with him by your side?

22:48 Kelsey (Guest): He was with me the day we had the concussion. So, he's kind of been there through the ride of it all and he even at our first visit with the Cleveland Clinic was like, “Kels, this just makes so much sense, you know?” So, he is kind of seeing the different pieces and taking me to the ER when, you know, I was having chest pains and high blood pressure and then low blood pressures. We had this eye-opening experience since he’s been there through it all. Like, OK, this doesn't make sense. This is what it is.

23:14 Jill (Host): That's great that he's so supportive. Is there anything that you know now about living with POTS that you wish you had known sooner?

23:22 Kelsey (Guest): I wish I would have known about the exercise portion to start even sooner. You know, they almost like need to hand you a playbook when you get diagnosed because my first diagnosis here in Pittsburgh was, I got a phone call. Well, I knew on the Tilt Table, I failed the Title Table there. And then I got a phone call. “Yeah, you have POTS, but just drink a lot of water. Have some salt, spend time in each position,” and that was it. At the time I wish I just would have known more or, you know, “hey Kelsey, here's a referral. We don't know this here, but take a look at this path or this path,” or just more knowledge instead of just you got your diagnosis, be on your way.

24:03 Jill (Host): Yeah, wow. Do you think that this has changed you as a person very much in terms of like personality or perspective?

24:12 Kelsey (Guest): I do, I think I was always caring, but now I feel like you never know what's going on with someone, whether you meet on the street, in the store, you know them personally - just more compassionate because you truly don't know what someone going through at home. I mean, they may look fine on the outside, but you don't know what they went through that day. So, I would just say it was just by opening in the fact that be mindful of who you're speaking to, who you meet. You never know what's going on.

24:40 Jill (Host): This question is a little related, but a little different. Has POTS taught you any lessons?

24:47 Kelsey (Guest): Be grateful for the good days and what you can do and just remind yourself that you are doing a good job and you're trying. I mean, I've read stories about people that are much more severe than me and you know, have it a little less severe, and just give yourself credit and give yourself grace that you're trying. You're trying to do the best and just take the good days, you know, one step at a time, I guess.

25:11 Jill (Host): Has anything positive come from your having POTS? Has there been any silver linings at all?

25:17 Kelsey (Guest): Yeah, on days that were better, a lot has improved. I don't have chest pain. I was waking up achy. One of the things my husband would joke, but it is funny but not, he said, “You're 31 and you use a heating pad religiously. Like, why is that?” And and now I don't have to use it as much 'cause I don't ache. So other parts of my health I feel like have really improved. I've always had GI issues and I feel like that is starting to improve. And so a lot of other health pieces have come together, it's just give and take, I guess. Some good, some bad.

25:50 Jill (Host): Are you up for doing a speed round where you just say the first answer that comes to your mind?

25:54 Kelsey (Guest): Sure.

25:55 Jill (Host): What is your favorite way to get salt?

25:58 Kelsey (Guest): I think the Nuun tablets, and I listened to the other – I can’t remember her name but she was from Ohio - and she recommended that the Hickory smoked salt. We got it this week and we love it. [Laughs]

26:08 Jill (Host): Oh cool, I’ll have to try that. What is the drink that you find the most hydrating?

26:14 Kelsey (Guest): I think water mixed with some sort of supplement. I do like those Nuun tablets.

26:18 Jill (Host): What is your favorite time of the day and why?

26:22 Kelsey (Guest): Truly, the evening. I love my kids and I love my family but when I can lay down flat and just take a breath for me when my heart rate starts to come down, I would say the evening after they go to bed and I can take a breath.

26:34 Jill (Host): How many doctors have you seen for POTS?

26:37 Kelsey (Guest): Just for my diagnosis this year I was, I think 4, but hindsight over the past couple years, numerous. You know all these different paths.

26:47 Jill (Host): How many other POTS patients have you ever met in person?

26:50 Kelsey (Guest): I don't even know anybody with POTS. [Laughs] So, I've never met anyone either.

26:56 Jill (Host): What is one word that describes what it's like living with POTS?

27:01 Kelsey (Guest): Unpredictable.

27:02 Jill (Host): What is a piece of good advice anyone ever gave you?

27:06 Kelsey (Guest): Just be thankful for what you have and just keep pushing through. Just one day at a time.

27:12 Jill (Host): What is something small that brings you comfort or joy?

27:16 Kelsey (Guest): My kids. That is the biggest, you know, their hugs and their happiness. You have no choice but to like feed off of that.

27:23 Jill (Host): Who is somebody that you admire?

27:25 Kelsey (Guest): My grandma. She has since passed away, but she had rheumatoid arthritis and just more recently, I mean. she pushed through and day after day and my mom reminded me of that the other day. She’s like, “You must have a little bit of her in you because I feel like the same. Days aren't easy, but you gotta keep pushing.”

27:41 Jill (Host): What is something that you're proud of?

27:43 Kelsey (Guest): I was just saying, my family - where we are through all of this and the things we still get to go and do. I think in kids, how can you not be proud of them?

27:54 Jill (Host): What is the toughest thing about living with POTS?

27:57 Kelsey (Guest): You're never quite sure what the day will bring or even right now for this flare, the hour. What are you going to be dealing with next? And so that unpredictability is frustrating?

28:08 Jill (Host): What are you good at?

28:10 Jill (Host): Probably just taking care of others. That's what I like to do. You know, I just like my kids and my family and my patients just to be taken care of, and that's what brings me joy. You know, I might not be able to fully take care of myself but, you know, making sure they're all good and happy and seeing people thrive.

28:28 Jill (Host): That's fantastic. That's beautiful. OK, what is a gift that you would send to every POTS patient out there if you had infinite funds for it?

28:38 Kelsey (Guest): I would make some sort of manual, a quick speed sheet of things that are helpful or who could contact, maybe even because I feel like with this, the more knowledge you have, the better off you are.

28:51 Jill (Host): Yeah, fantastic. And can you answer this sentence? People might suspect I'm a POTSie when...

28:58 Kelsey (Guest): For me, bending like squatting down, you know, just to give my legs a little break and I can come back up or just to get the reprieve to my legs. So, you'll see me sitting down in my kids stroller, coming back up or picking something up. That's how I get through.

29:13 Jill (Host): That's great. I just have a couple more questions. What do you wish more people knew about POTS?

29:19 Kelsey (Guest): I wish that they knew how we were truly feeling on the inside in terms of don't always jump to the conclusion that just because someone smiley and bubbly and functioning looks good to the outside and they're functioning well, that you don't really know what's going on inside.

29:36 Jill (Host): Is there anything you would want to say to your fellow POTS patients who might be listening?

29:42 Kelsey (Guest): I would say hang in there and be proud of where you are. I know some can't get out of bed, so even if you got out of bed today or you went for that five minute walk or just let yourself take in those wins and be proud of that because I think that is maybe what they described me on my first visit is, you know, you're going to ride the wave and it can be frustrating and I can now see that more and more, especially as of late. So just be proud of the little gains you have and just 'cause you have a set back doesn't mean you're not gonna be able to take a few steps forward in two or three days.

30:16 Jill (Host): And my last question is, why did you agree to let us share your story today?

30:21 Kelsey (Guest): I am one of those personalities that if the more info I can have and - not that misery loves company, but you know, I felt validated when I hear other stories that, OK they are going through the same thing and I can relate to that or, Oh, that's a good tidbit of information. Or, you know, this doctor may help. So the more I think with this POTS community to share and get your story out there, even if it can one person can relate, then I would love to share that.

30:49 Jill (Host): That's beautiful. Well, thank you so much for sharing your story. I hope your October slide ends when October ends, or maybe sooner. It's been a joy talking to you.

31:02 Kelsey (Guest): I really appreciate it and the podcast that you're doing. We listen to them all. So I I love the information.

31:08 Jill (Host): Well, I think you were the first podcast interview to refer to somebody else's interview. So that's fun to know that you got something out of somebody else's, and I'm sure there's lots of people getting stuff out of yours right now. Anyway, this is fun. I love connecting with you and everyone else. So hey, listeners, remember this is not medical, dental, spiritual, fashion, or menu advice. Consult your health care team about what's right for you, 'cause we're all so different. But please consider subscribing because it helps us get found by people like you. And thank you for tuning in. Remember that you're not alone. And please join us again soon.

31:46 Announcer: You can find us wherever you get your podcasts or on our website, www.standinguptopots.org/podcast And I would add, if you have any ideas or topics you'd like to suggest, send them in. You can also engage with us on social media at the handle @standinguptopots. Thanks for listening and we hope you join us. This show is a production of Standing Up to POTS. © 2022 Standing Up to POTS. All rights reserved. [Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopots.org]