Episode 17 – POTS Diaries with Chelsea from OHLink: https://tinyurl.com/9k35pyp5

00:00:01 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.

00:00:29 Jill (Standing Up to POTS): Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook and today we have an episode of The POTS Diaries where we get to know someone in our community and hear their story. So today we are speaking with Chelsea, who kindly volunteered to be interviewed by going to the standinguptopots.org website and signing up. That's something that anyone could do. Please do if that interests you. And so Chelsea, thank you so much for joining us today.

00:00:58 Chelsea (Guest): No, thank you, I'm so happy to be here and tell my story.

00:01:01 Jill (Standing Up to POTS): We really appreciate it. Yeah, so can we start with just some basics about you, like what's your age? Are you in school? Where do you live? That kind of thing?

00:01:11 Chelsea (Guest): So, I am 31 years old. I live in Cleveland, Ohio. I live alone but with my pet cat Pip, who's my POTS caretaker from time to time. I work full time for the Cleveland Clinic as the Director of Development, so I oversee major gift fundraising for both cancer and women's health to lead the strategy there.

00:01:30 Jill (Standing Up to POTS): Wow, that sounds amazing. OK, I just gotta ask, so what does Pip do for you?

00:01:35 Chelsea (Guest): So PIP is like the biggest comfort. So, you know when you're having those down days, it's really hard when you live alone because you're alone. And so when you're having a day you're too dizzy to get up and do anything, he comes in bed with me, he’ll purr. If my heart rate is actually fast, he sits on my chest, which is kind of crazy that he's that intuitive to know these things. But he just makes my day 10 times better every day, but especially like when you have a chronic illness, it's so helpful to have someone or something that's furry to kind of help guide you and make you feel much better when you're alone.

00:02:10 Jill (Standing Up to POTS): Oh, that's so nice. OK, so back to some basics. How would your friends or family describe your personality?

00:02:19 Chelsea (Guest): Oh gosh. I would say they would say enthusiastic, go getter, always constantly doing something. Pretty much for the most part, like a self-starter, always scheming something up, like I always have like an idea to do something on the side and like always, like thinking of what new hobbies, etc. that I could be doing. And so that's probably how they would describe me. Maybe all over the place then too. (laughs)

00:02:47 Jill (Standing Up to POTS): So, at what age did you have your first sign of anything related to POTS?

00:02:54 Chelsea (Guest): My journey has only been so far like a little bit over a year and a half, so the first time I ever had something that was related to POTS, but obviously I didn't know it was POTS at the time - I'll never forget 'cause they even like know the date in my head. It was September 10th. I was supposed to go to this work event. I had stayed home in the morning because I was having some really killer menstrual cramps, and this I pre-pandemic. So, I was heading into work and I had this big meeting, and I definitely wanted to meet the person that I was meeting with. And I just remember sitting there in that meeting and all of a sudden out of nowhere my heart rate just started to go up. And I was like, “Oh, this is really odd.” And the person who's in the meeting is a doctor, so I'm like there's no way I should be nervous about anything health wise 'cause here's like one of our top doctors that I'm sitting across from. But I was. I almost at one point kind of grabbed the table and I was just kind of in my own world and I walked out with my colleague and I was like, “I don't feel right.” And so, I remember sitting on a bench trying to get my heart rate down and was like, “Do I leave the hospital? Do I go home and try to rest?” I'm thinking about this work event. Maybe I just have low blood sugar, so I went and got a drink – some juice - and it was just like it's not going down. So I ended up going to the ER because my Apple Watch at the time - I had just gotten it because I got it for like actually our work employee health plan to count the steps to get discounts - but it has the EKG feature and it just kept saying inconclusive, inconclusive, and I was super tachycardic when I like ended up in the ER. So they put me back. They found that like my potassium was a little bit low and they're like, “OK, we'll send you home.” And then the next day I decided to go back into work like half-day, and I ended up going back into the ER. My boss was like, “There's something not right with you.” They took me into the observation room, so I stayed overnight, they put a Holter monitor on me, the whole 9 yards. And it was like, “Yeah, your heart rate’s a little bit all over the place, but there's nothing wrong with you. Like, we can't tell what's wrong with you.”

00:04:47 Jill (Standing Up to POTS): Wow, so then what happened next? Did you just kind of keep on going on with life for a while or did you get a diagnosis right away?

00:04:56 Chelsea (Guest): Yeah, so it's interesting. I, because I worked for such a prominent healthcare facility and I worked on their main campus, I was like, “OK I need to get checked out. We are number one in the world for heart and like give me a cardiologist referral now.” So they did. And of course, like I was found to see her like within a month, like after my ER visit. I like got in touch with a new gynecologist to say like, “Hey, maybe this was from heavy bleeding. I don't know.” So, I was kind of trying to find my journey 'cause I still wasn't feeling right and it was just so odd. It took me like weeks to be able to walk normally again where I wasn't getting out of breath and feeling like I was going to faint and it was so weird for somebody like myself who has like frequent flyer miles out the wazoo, who would exercise daily and then all of a sudden, it's like I can't even walk somewhere, and so people kept saying, “Maybe it's nerves, like, you just start this new job.” And I'm like, “I'm actually less anxious now than what I was with a previous job.” I went and saw a vestibular specialist, so maybe this is vertigo and had like all the vertigo testing done. And they’re like, “Yeah. You know, your neck is a little funny,” because I was in a car accident years ago, “So, like, let's try PT in your neck. The PT was kind of like this is odd 'cause she's like, “I don't know why your heart rate’s all over the place.” And at the same time I was on Tik Tok, and I was seeing like these people post about being a POTSie, and I'm like, “What is this?” And I started to resonate with some of their symptoms, but I didn't really, like, couldn’t make the connection like, “Oh, I could have POTS,” because I never really heard of it before. But I went to a party with my boss and her vice chair of emergency was there and she was explaining like what happened to me and, like, what's been going on to me. He goes, “You know what? I think it’s POTS.” And she looked at him, and she said, “Really? She’s a little old, don't you think, to be diagnosed with POTS like, you know, at the age of 29 or 30?” And he goes, “No.” He's like, “You might want to take a look into that.” So I mentioned it to the cardiologist and she goes, “Yeah, maybe. Or maybe,” she's like, “you know, you just kind of need to wait things out.” And then I went to neurologist who said like, he actually prescribed me the vestibular testing and then I decided to go to a neurologist, still all within Cleveland Clinic, who was my migraine doctor years ago because I had left Ohio and then came back. And he did a phenomenal job of helping me get my migraines to place where I, like, basically only have like two or three a year, which is crazy and I'm not on medication for it. So it's like he always listened to me, so I'm like, “I'm going to go to him.” I was like, “Look, I might have POTS. I've read about it, this sounds like me. I feel like this is something.” And at this point it's November, so a couple months have gone by since that first episode, and I'm not getting any better. I'm just having to learn how to deal with the POTS and any sort of situation, whether it be social, professional, or just even at home, waking up in the morning and feeling so off kilter. And so he goes, “OK.” He’s like, “I hear you, we'll give you the tilt table test.” And so I scheduled tilt table test for December ended up canceling it 'cause it was like on Christmas Eve and I was like there's no way I'm doing this on Christmas Eve. And then rescheduled it for the following like February, like right before things with the pandemic really got crazy in March. And I remember being in my dermatologist office and she said, “Oh,” she was about just prescribe me an antibiotic. She's like, “Oh, by the way, your neurologist has a note in here. I'm gonna hold off on that antibiotic for now. Why don't you get in touch with him” And he said, “Yeah, for sure this is POTS.”

00:08:09 Jill (Standing Up to POTS): So how long did that whole process take from the first time you had symptoms?

00:08:13 Chelsea (Guest): Yeah, so it took like a little less than six months which is really amazing, I know, from like listening to stories of people in the POTS community. I'm extremely fortunate that I had like this doctor connection at a party who said it might be POTS at a party who said it might be POTS, and then this neurologist was really helpful in listening to me. And then he referred me to a neuromuscular neurologist who specialized in POTS so really help get that journey going. But I was just like so in shock is for the longest time. Like maybe it's just me, maybe it's just anxiety like I've just had so much on my plate in my life. And so perhaps this is what is going on. You really start to feel isolated 'cause it gets all in your head, you're like, “Oh, I don't feel right when I set these high-top tables at bars.” Like that was like maybe one thing I was like, “Am I just nervous about this?” And then when I would meet with people at the clinic and, you know, walk, sit down, and get up. And there was so many position changes, like, I would always have trouble with my heart rate. And I'm like, I should not be nervous about how I'm feeling. I meet with doctors constantly, so if anything were to go wrong, I'm in the best place in the world, and I truly believe that for the best care. So for me, it's just like I was so puzzling. So I was like, “Maybe I just need relax,” and people would always recommend things to me. They're like, “Here's these stress vitamin gummies.” I have a weighted blanket. They're like, “Lavender baths.” Like all these things and I was just starting to think like all these self-care things should like kind of remedy this out. And, no. Not at all. I mean, I went gluten free right before I went and got my POTS diagnosis. It seemed to help a little bit, but still I was like, “Why am I so dizzy all the time? Why do my legs kind of like shake if I've been standing for some time?” It was just so weird to me and like I've been through various health diagnoses, and this has been the toughest one so far.

00:09:53 Jill (Standing Up to POTS): Wow, 'cause it sounds like from what you're saying it took you six months to get a diagnosis, even though you spent 8 hours a day on the Cleveland Clinic campus meeting with top physicians. So this sounds like maybe the best-case scenario that anyone could hope for. That that tells me that we still have a little work to do as far as awareness raising.

00:10:22 Chelsea (Guest): Right. It's crazy to me too, because like when I would explain it to people that I worked with, they're like, “Wait, what does that stand for?” It's really long and, you know, all of us represent different units, like for me, it's cancer and women's health. For other people they’re like, “I've never heard of this before.” My colleagues' kids would always even like ask, “Was Chelsea dizzy today?” And like so there's like things that they would pick up on, which is kind of crazy to me. But it just like now, it's such a part of my life, but I hadn't even heard of it before I started my own journey of what's going on with me. So it's still, like I said, it's so crazy like how many people don't know about it. But I think the pandemic has actually brought a lot of light to it because unfortunately a long hauler symptom, or you know a condition you can get is POTS from that and we've had several nurses that I've known of, like other coworkers who ended up with POTS and they're still struggling with it, which makes me so sad because they had COVID and some of them had COVID really mildly, and it didn't really affect them during the time that they had it, and then they're dealing with POTS now, which is, again, crazy and a sad way to bring this to light. But I am fortunate that maybe more research you know, and of course I work in the world of money, so whenever I see a big gift that comes into our autonomic disease department, I am just like so excited because I'm like, I know this is going to help, you know, bring about research, bring about awareness to help that the best case scenario doesn't have to be six months. Maybe it has to be a month.

00:11:47 Jill (Standing Up to POTS): Right! Gosh. So, can I ask now that you have a diagnosis and presumably you've seen some excellent physicians, has your POTS improved a lot? Or how much - how much better have you gotten because of knowing what it was?

00:12:04 Chelsea (Guest): Yeah, so I would have to say like the first summer with POTS was a nightmare. Like, I had no idea like how quickly I was getting dehydrated so I had this great like meeting with my POTS doctor virtually in May. It was like my first appointment and I thought this was so great. Like, you know, I'm doing much better. I'm walking everyday. I'm eating right. I took Propranolol for a little bit which helped get my heart rate under control to the point I didn't have to take it anymore. I still had symptoms, but they were manageable, like I kind of muster through. It and then summer came and things all went to hell in a handbasket. Like, I was in the ER three different times, like I could not figure out why I was shaking. I had gastric emptying, it was just awful. And so I was like, “I don't know what to do.” I was trying all these different medications and it seemed like every time I would try something different, like Midodrine or whatever it is, I would feel sick. It wasn't helping. I'm like, “When is this going to get better?” So I ended up calling, 'cause I was getting like a lot of anxiety feelings with this as well, like just fight or fight, really weird, intrusive thoughts. And I talked to, you know, somebody like, “Maybe you should see a psychologist.” And I found a woman who works again at Cleveland Clinic who is a wonderful psychologist who specializes in chronic conditions who helped kind of put me back out there because I kind of did one of these things, like I got better, tanked hard, and then it's been a slow climb up ever since. But as I look at myself from last summer, it's not the same person. Like, I've traveled. I just went kayaking this past weekend, I walked four miles in the morning every day, and I know every POTS patient is different, but the only medication that I take is an antidepressant that I've been on for years, but the biggest thing that has helped me is these IV treatments. I get them typically around the time I have my period, 'cause I was losing so much fluids. However, I just had endometriosis surgery like a month and a half ago. So that that should help change things and help make things for the better. But I would have to say like, you know, I'm not 100% there, but I have to let go of that version of me that was before, you know, this whole POTS diagnosis. You know, I'm a version of myself that, who knows, may change again in, you know, a few years or whatever. But the person who, you know, before POTS is nothing I can compare to 'cause even so, it's like I have all this knowledge and experience because of my disease since then, and it’s almost been personal growth for me as well in terms of like, how do you handle things? How do you handle disappointment? How do you handle being alone?

00:14:28 Jill (Standing Up to POTS): That's great that you look at it so positively. If you were going to give us a snapshot of your life before POTS and then a snapshot of your life after POTS, what would that look like and what would the biggest differences be?

00:14:43 Chelsea (Guest): So before POTS, I literally flew out to California from Detroit every other week and can go on any hike. Could wear any shoes. Could drink no water, no salt, and was fine. Like, I could go anywhere. Like, I didn't have to worry about, “Oh am I gonna have to stand for a long time? Oh, are the seats going to be high up and my legs are going to be dangling. Let me think, am I having a good day? Am I having a bad day?” Like, I could just make plans without even thinking about it. So, I mean it was crazy - I was always on the go. I was never at home. I was always doing something and I never feared, you know, what's the seating situation like? What's, you know, the eating situation like? Will I get to be able to have enough water? Did I have enough water today? And today it's like, to be honest, you know, it's more water. What's the seats like? You know, before I could just, you know, go on any visit with like a donor or client and not have to worry about if I was having a bad day. Today it's like, OK, I know I have this on Thursday and it's already Monday, I need to start thinking on how I can have, like, the best meeting on Thursday, whereas beforehand I would go to bed at 2:00 AM, wake up at 4:00 AM to start the whole (inaudible) thing. And now it's like I need this much sleep. I need to forego this social activity because if I do this, I'm going to be so exhausted for the next how many days. So it's definitely like I am still me, but I don't have as much of me to give.

00:16:10 Jill (Standing Up to POTS): That's a good way to say it. So who or what helps you the most with managing your POTS?

00:16:17 Chelsea (Guest): My family is obviously super helpful, and friends are as well. My cat, Pip. But what has made the biggest difference has been my psychologist who specializes in chronic conditions, and so for me it was like a lot of just getting out some of that, you know, isolating feelings of like, here's how I feel, and here's what I was, and here's, you know, what I want to do but I can't do, as well as, you know, does this get worse? Could this spiral out of control? Because, like, for a while there, and I'm sure a lot of POTS patients has experienced this, like, you feel 'cause your heart rate is so fast, like everything is just going to go out of control. And it can put you in a really dark place after some time if you get into that line of thinking. And so for me, I was just starting to get to that place where it's like, what if I just, you know, my car could crash? What if I do some like involuntary movement that might do that 'cause like my body can't figure out how the brain and heart need to work together? What if I just start going haywire and other areas? And she's helped really put that in perspective for me and that has helped a lot. And she's also helped me celebrate moments where it's like you did something. Yes, maybe you did that just fine before you had POTS, but this is a big deal for you. So like I know for a fact like when. It was time for voting. I waited an hour standing. And she's like, “You should be so proud of yourself.” I'm like, “I know I should be so proud of myself, but I'm still thinking about my pre-POTS.” She's like, “No.” She's like, “Take time to be proud of yourself for the person who you are now and what you've been able to accomplish.” And I think that's something that's really important for like fellow POTS people to like, kind of keep in mind. It's like you're - you can celebrate like the most simplest thing, like you walked from one place to another. Great, you know, you didn't - your legs didn’t shake for the first 15 minutes or only shook for the first 15 minutes of standing. And so that's kind of what has helped me the most is really trying to, like, let go again of that former self of what I was and just embrace the new person I am today.

00:18:03 Jill (Standing Up to POTS): Yeah, that's fantastic. And you know you make me realize that I think I made kind of a classic mistake in that department where, when I couldn't be me, the person that I had been, and I, you know, basically, was not proud of who I could be, I just stayed home. So now I was not proud of who I was and I was isolated and lonely. And then I was depressed and that was a spiral that was not good. So that sounds really healthy. So tell me this, what is the best type of help or support that friends or family could give you?

00:18:37 Chelsea (Guest): So, I think it's just like an understanding of, I may be good like one minute or one hour or one day. That doesn't mean, like, the next time you see me that I'm going to be good, and I think it's so hard because it's like people can see, like, on my Instagram it's like, “Well you were able to go to the baseball game on Saturday. You should be fine to come meet me for lunch on Monday.” It's like, “Yeah, in theory it is. But my body may not be ready. I'm ready, my body just may not be able to do it.” I think it's just building that understanding of I want to do all these things. Trust me, I want to stay at these places longer. I wanna commit to plans, you know, months in advance, but there's going to be times I just can't and like instead of, you know - I want you still to invite me to those things, but just understand like maybe I may not show up or like give me the freedom and the space to say like, “I'm not feeling good.” Like, there was an example of my friend and I, we went on a long walk and it was like one of the hottest days here. Like, Cleveland weather is always so funky as it transitions in the summer. It was like 50 degrees and then 90 degrees. And so it was so hot. We went on a two mile walk and I wanted to like celebrate her getting new job. We're going to get like these lavender margaritas which are amazing. And we go into the restaurant and they don't have air conditioning. And so I'm sitting there and I am so hot. I'm like, I'm using ice to kind of cool myself off and like, I just look at her like, I was like, “You know what? I really want to be here for you. I really want to be present, but I gotta go home, like, I like, I don't feel good, like I'm gonna pass out in this space.” Even though passing out is not something that I have fortunately have only done once with POTS, I just felt like this is not good. And so being able to be open and communicate that I think is the best way to help others help you because they don't know. I mean, it's an invisible illness. Like, you would never know sometimes the way I'm feeling. Like, I look at pictures of myself and people are like, “Well, it looks like you're having good time there.” It's like, “Well actually, I felt like all my blood was in my legs and my head was floating in a different stratosphere.” So I think it's like important, like because it's not visible to people, and sometimes it is visible, is like knowing when to say like, “Look, I gotta tap out. I gotta just take a moment I need do this, like I need some space. And that's been the most helpful thing for me is like I typically was a person who wants just to mask all the time, just be like, “No, I can push through this, I don't need to tell people this. I don't want to ruin anybody’s day.” You're not ruining anybody’s day. You're helping them help you, and there are people who love and care about you, so they definitely want to help you. So it's always good to educate them 1) on what POTS is, because most people don't know. But 2) you know, tell them, you know, what you need and when you, again, it's too much for you and like you need to sit down.

00:21:19 Jill (Standing Up to POTS): Yeah, that's great. And as I am doing this podcast and speaking with more POTS patients, I am determining a stereotype. It might be wrong, but it feels like to me that POTS is not only invisible, but it's often non-audible. Like, you are an example of someone - your voice is very energetic and enthusiastic and full of life, and so talking to you I would never guess if you weren't feeling well or if you were dizzy or if you were wishing that you could go home and lay down. And I don't know if that is common of lots of chronic illness patients or just our community, but I hear that a lot and I know that sometimes people have told me that, “Well, I don't feel as good as I sound. I just have a muscle memory. That's how I used to talk and that's how I still talk.” And so I think that's a really good point that people have no way to know how you're feeling if you don't tell them. So is there anything that you know now about living with POTS that you wish you had known sooner?

00:22:25 Chelsea (Guest): Like, I think I wish I would have known how helpful hydration is and how an IV treatment is much better at doing that for you than just drinking tons and tons of water with, you know, whatever electrolyte supplement that you prefer. I just didn't realize, like, especially like when I was bleeding heavy from, like, menstrual cramps or it's like really really hot outside, I'm never going to hydrate myself to that point where I'm going to be able to get my blood volume up, get, you know, things up so I can sit upright, stand upright, and not feel like I'm totally floating. So doctors are sometimes hesitant to, you know, prescribe them because like it can ruin your veins. You might need a port, but if you truly are having difficulty, please like never hesitate to like bring that up to your doctor. I think the other thing that I didn't realize how much it affected my POTS symptoms is sleep as well, and I've always had just like trouble sleeping and, you know, just bad sleep hygiene overall, because I was always on the go and I was always switching East Coast/West Coast time. So I was like, alright, you know, this is just my life. I live on the go. Well now it's like I need to take a step back and figure out: I need really good sleep and what does that mean? It means establishing your routine. It means, you know, making sure that I'm giving myself enough time to get to bed and get to bed properly, that I'm not just scrolling on my phone for hours then all of a sudden you know it's 1:00-2:00 in the morning and all I've done is just feed myself with blue light and I'm going to wake up at 4:00 and then do the same thing until 6:00 and then wake up in another hour and have to like start my day on a really really bad foot. So that's like, between the two things, like I know they're really simple, I just didn't realize like how much they truly affect you. And some people are like, “Oh, that's just getting older. You know, you're in your 30s, you know, sleep is really important.” I’m like, “No, yeah. Sleep is really important, but like I have a condition that if I don't sleep properly, I'm gonna be shaking like a Chihuahua all day, so I really need it.

00:24:23 Jill (Standing Up to POTS): I like that next time I shake I'm gonna think of a Chihuahua. So now we have something that's meant to be a little bit fun. It's a little cruel. It's a speed round and we know that a POTS brain typically is not getting enough oxygen and so a speed round is kind of mean, but it's just meant to be the first thing that comes to your mind.

00:24:42 Chelsea (Guest): OK.

00:24:42 Jill (Standing Up to POTS): Sound OK?

00:24:43 Chelsea (Guest): Yep, perfect.

00:24:44 Jill (Standing Up to POTS): OK. What's your favorite way to get salt?

00:24:47 Chelsea (Guest): Oh, so I bought like the smoked salt from Amazon. It's like from San Francisco Salt Company and it tastes like applewood bacon and it's my favorite thing to take a spoonful and eat it. (laughs)

00:24:58 Jill (Standing Up to POTS): Oh, I hadn't heard of that one.

00:25:00 Chelsea (Guest): It makes me feel like, it’s a little fancier. I actually like had my mom buy me this like little salt container for Christmas, so I feel like I'm like a 1950s housewife now like needing a salt container on her oven just like pinch salt in all my things. But the smoked salt, I mix in with some of the other regular salt and it makes things a little bit more fun. It’s not, you know, as fruity as some other things. I love my electrolytes, but man that smoked salt - chef's kiss.

00:25:27 Jill (Standing Up to POTS): Very nice, I think it makes sense if you're a POTS patient to become a salt connoisseur, if you can't become a connoisseur of like wine or whatever else, might as well right for salt. OK, next question. What is the drink that you find the most hydrating?

00:25:41 Chelsea (Guest): I love grape Propel and so whenever I'm having like some really bad episodes, I will buy a 6 pack and that is like my fun 6 pack, and I will go through all 6 probably within a couple of hours. But on a day-to-day basis. I do the Nuun tablets, N-U-U-N. I have shaky hands for the most part. So I know some people love Liquid IV, well, Liquid IV was getting all over my counter tops, and so - and other people countertops. So I switched to these tablets. They're awesome. I love the grape and strawberry lemonade ones. They taste really good, and they're not as sugary as some of the other drinks.

00:26:15 Jill (Standing Up to POTS): How many other POTS patients have you ever met face to face?

00:26:19 Chelsea (Guest): One, and they're kind of like, uh, recovering. They're more dormant in terms of their POTS, but one. And you, too now. So two.

00:26:28 Jill (Standing Up to POTS): How many doctors do you think you saw for things related to POTS or trying to get a POTS diagnosis?

00:26:36 Chelsea (Guest): The cardiologist, audiologist, the gynecologist, the subspecialty gynecologist, neurologists, ER doctor - like 8.

00:26:46 Jill (Standing Up to POTS): What is one word that describes what it's like living with a chronic illness?

00:26:53 Chelsea (Guest): Unpredictable.

00:26:54 Jill (Standing Up to POTS): What's the best advice anyone ever gave you?

00:26:58 Chelsea (Guest): Again, I keep going to this theme, but letting go of your former self and embracing the new person who you are and don't try to compare. Comparison is, you know a thief of joy. So make sure that you're focused on you now, not you before.

00:27:12 Jill (Standing Up to POTS): What is something small that brings you comfort or joy?

00:27:18 Chelsea (Guest): Well, my cat, but I can't say he's not necessarily small 'cause he's overweight. (laughs) But I have like these salt inhalers that are peppermint and whenever I'm just kind of like in a funk or whatever I like use it and it puts me in like a better mood. It helps like with panic attacks. It's super small. It's from Dollar Tree. Literally just Himalayan salt and peppermint oil. And honestly, it helps me so much. It kind of brings me back, realizes you know my brain is working. My face is working, you know blood is in my body. It's definitely helpful.

00:27:50 Jill (Standing Up to POTS): Cool, OK. What is the best book or TV show or other distraction for helping you take your mind off things?

00:27:59 Chelsea (Guest): Tik Tok is great because you get new content curated for you basically every 30 seconds. So if I'm having a really bad like POTS day, it's like it's great to have that 'cause it's like maybe I don't have energy to watch a full movie or a full TV show. So it’s awesome just to scroll through the app. Animal Crossing on the Switch is something that I like, too, because it's - there's no real point to the game besides just living on this island and it kind of like has like some calming music. It's not like really fast pace or aggressive, so that's also helpful as well to kind of like transport myself into a different place. Then in terms of books, I like reading things that are medical and that's always been an interest of mine, so I don't know if that's helpful for some people because it may just be like a little bit too much when you have a chronic illness. You live in this space already, you may not want that. But definitely to like unwind Tik Tok and Animal Crossing.

00:28:53 Jill (Standing Up to POTS): Nice. Who is someone that you admire?

00:28:57 Chelsea (Guest): Oh, that's a good question. My mom.

00:28:59 Jill (Standing Up to POTS): What is something that you're proud of?

00:29:00 Chelsea (Guest): That I'm able to face each day despite having all these things stacked up against me. As POTS patients know, you wake up not knowing how you're going to feel. And that each day, like, I'm waking up - I mean, I'm working from home right now since the pandemic - but it's like I wake up, I turn on my computer, you know, I try to muster through as best as I can. And the fact that I just - I'm proud that I wake up and get up.

00:29:27 Jill (Standing Up to POTS): If you could choose to have one superpower, what would it be?

00:29:33 Chelsea (Guest): Well, besides making sure that my blood flow was in the right places, I think it would be really cool to fly.

00:29:40 Jill (Standing Up to POTS): That's mine too. OK, what is a gift that you would send to every POTS patient out there if you had infinite funds?

00:29:50 Chelsea (Guest): Probably that salt. Like, just I mean – it's like your salt sommelier. It's like, I would love to send you the salt.

00:29:56 Jill (Standing Up to POTS): If you see an image of yourself 10 years from now, what would you like to be doing?

00:30:04 Chelsea (Guest): 10 years from now - you know, I used to have like those plans where it's like at five years I do this, at 10 years I do that, and for 10 years from now I just hope I look at a picture of myself, I'm happy I'm healthy, you know, even if I'm still struggling the way I am with POTS still today. That like I I find joy in certain things. I don't struggle with like getting hung up on things or if I do, it's you know few and far between. So I love what I do now for work. I can't imagine me doing anything differently and I love where I work. So eventually, like you know, I'm 31, I'm single. I would love a family someday as well, but again, it's all on the right timeline for whatever is in store for me.

00:30:44 Jill (Standing Up to POTS): What is something that you are grateful for?

00:30:47 Chelsea (Guest): Really good doctors and being in a place where I have that. I know that this is - I'm beyond privileged, like so beyond privileged. Again, like I feel like sometimes silly when I say like I struggled without getting a POTS diagnosis for six months 'cause I know the average I think is six years. So for me I'm just so grateful that am surrounded by such talent and such minds that know how to, like, help solve these problems. And, you know, I get to see the impact of research, and so I almost get to see behind the curtain before it's unveiled to the rest of the world in terms of like even POTS research. So I’m really grateful for that.

00:31:23 Jill (Standing Up to POTS): And last quick question. People might suspect you're a POTSie when...

00:31:31 Chelsea (Guest): (Laughs) After standing for too long, I start doing like the weird dance like where it's like I gotta either walk it out or like I will do this thing where I'm taking out my hair bun and putting it back up like constantly, just like I gotta like refocus my thinking and something else or like I'm grabbing the back of my legs. So I don't know like if the normal person would realize that by I'm sure another POTS patient might see me and be like this is a young healthy girl needing to sit down? Yeah, probably POTS.

00:32:01 Jill (Standing Up to POTS): (Laughs) OK, so just three more questions. What do you wish more people knew about POTS?

00:32:08 Chelsea (Guest): It's difficult and every day, again, is different. You know, when you ask me that one word, it's “unpredictable.” And so you really don't know from one day to the next, things can change. But I also want people to know, it's like, we can still do amazing things, like still invite us to certain things. Don't, you know, you don't have to expect us to come. Always then, you know, leave that space for us, but still invite us to all the things that we used to do before POTS. It makes us more us, it makes us more our identity. You know, POTS is of course part of our identity, but I don't want it to be my only identity. So you know, for me, it's like I, I'm a good friend, I'm a traveler, I'm all these other things besides my disease. So please, you know, remind me of that by, you know, hanging out with me and inviting me to do things. And if I'm not feeling so great, you know, maybe be OK with the night in with me. Sometimes I would just - I ask friends, “Is it OK that we just go to a place I'm really comfortable with? I know the seating, I know like it's like right next to my apartment so I can walk home if need be.” It's just one of those things where it's like I wish people just knew that we love doing things we just can't always do them.

00:33:14 Jill (Standing Up to POTS): Is there anything you'd like to say to any of your fellow POTS patients who might be listening?

00:33:22 Chelsea (Guest): That, you know, if anybody is struggling, like you know, if you're in a real like bad POTS flare up, that it gets better. It's like, again, it's weird to see like there's days where I have would have thought like this is just always going to be this way and it's not always going to be that way. Sure, there's not always a quick solution or fix always immediately available, but things do things do get better. You learn to adapt. Especially for those who are newly diagnosed, it's a world of confusion. It's a world of explanation to friends and family that you have to do and that you have to learn yourself, first of all. But to really just keep doing what you're doing and don't feel bad like about what other people are doing to you. Like sometimes I'll see people who are POTS patients on like Instagram and stuff. I'm like, “Wow. Look at them, they're doing all these things.” And it's like, no. I mean, like you can't compare to anybody else's journey. You know you are who you are. You know who you are, it's like I see you I validate you. You know if you need, if you're somebody who needs to sit more than I do, that doesn't make you any less or more reports patient than me. So, everybody’s journey is different.

00:34:24 Jill (Standing Up to POTS): And last question, why did you agree to let us share your story today?

00:34:31 Chelsea (Guest): I wanted you to share my story today just because I think it's unusual how quickly I got diagnosed. And just like, even I want people to know, like, even if you are in like the most research filled, you know, smartest people in the room institution, it can still take a long time. I also just wanted to, you know, get more involved in this community. I think for the first kind of six months, I wanted to distance myself from anything to do with POTS, and now I realize like there's health and there's healing and there's, you know, good feelings that come from being a part of an organization that's trying to change for the better for all of us out there. So that's why I agreed to do a podcast.

00:35:10 Jill (Standing Up to POTS): Well, thank you so much for sharing your story and all your insights with us. You're actually the first POTS patient I've interviewed that I didn't know beforehand, so you have strengthened my theory that any two POTS patients can meet for the first time and have plenty to talk about. But I really appreciate your helping us to spread awareness and I hope that things keep getting better for you and we hope that you'll stay in touch. And hey listeners, remember that none of this is medical advice. Consult your own health care team about what's right for you because we're all so different. But thank you for tuning in. Remember that you're not alone and please join us again soon.

00:35:53 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. © 2021 Standing Up to POTS, Inc. 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.