Episode 99: Diaries with Zoe from Utah
[00:00:00] 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.
[00:00:29] Jill (Host): 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 where we get to know someone in the POTS community and hear their story.
Today we are speaking with Zoe, who kindly agreed to speak with us and share her story so that all of us might benefit. Zoe, thank you so much for joining us today.
[00:00:53] Zoe (Guest): Hi, I'm so happy to be here.
[00:00:55] Jill (Host): So, let's start with some basics about you. How old are you and where are you?
[00:01:00] Zoe (Guest): I am 17 and I am from Salt Lake City, Utah.
[00:01:04] Jill (Host): Oh, wonderful. Okay. How would your friends or family describe your personality?
[00:01:08] Zoe (Guest): I think they would say that I'm a very A-type person. I'm really stubborn, but I still try to stay positive with a lot of things.
[00:01:14] Jill (Host): By 'A-type', do you mean kinda like driven and ambitious?
[00:01:19] Zoe (Guest): Yeah, definitely. Definitely driven. Definitely very, very stubborn when it comes to a lot of things. I like having things a certain way, really organized and everything. [Laughs]
[00:01:28] Jill (Host): And can you tell us some things that you're good at, if we force you to brag about yourself?
[00:01:35] Zoe (Guest): Well, am, I am a theater kid. I've been doing performing arts since I was, I believe in third grade. I am an aerialist as well, uh, which with POTS, it's fun. And then I love biking, and I'm also a journalist.
[00:01:48] Jill (Host): Oh, excellent. So many things. And just so everybody knows what you mean by aerialists, do you mean like aerial silks or what, what does that mean?
[00:01:56] Zoe (Guest): So it's kind of like, if you've seen the Greatest Showman, it's kind of like what Zendaya does, like climbing on the rope and then doing like all the tricks all the way down and everything.
[00:02:05] Jill (Host): Yeah, you know what? I love doing that too, and I find that it really works because I get to be upside down so often.
[00:02:11] Zoe (Guest): Yeah.
[00:02:12] Jill (Host): At least for me, like I'm pretty strong. I just cannot stand being upright for too long, and so aerial silks lets me be like just a normal person in the crowd and nobody knows that I couldn't stand up very long if I wanted to, and you can just hang upside down for a while.
[00:02:29] Zoe (Guest): I fully, fully understand that. [Laughs]
[00:02:32] Jill (Host): [Laughs] That's great! If you had a life before POTS, can you give us a snapshot of what that looked like?
[00:02:40] Zoe (Guest): It was definitely more athletic. I, I still am, I still go to the gym. I still do a lot of exercises, but I was definitely a more rambunctious person. I was a great runner as well. Amazing sprinter, like in second grade, I won an award.
[00:02:56] Jill (Host): Wow.
[00:02:56] Zoe (Guest): And now I can maybe run like a solid half a football field if even barely, and then I have to sit for like a while. It'll like knock me out for the rest of the day.
[00:03:06] Jill (Host): Well, yeah, I was gonna say, so if you try to run across a football field, what does that feel like and look like? You know, give us the play by play.
[00:03:15] Zoe (Guest): It's kind of like, at least how I've described it, is like every single muscle in my body has like a weight on it, like it's being held on my bricks kind of. And so I'm running and it's just like so much effort and exertion and it's just really hard to get to my destination without completely falling over and just like giving up fully.
[00:03:35] Jill (Host): Yeah. How many years did you have pre-POTS?
[00:03:40] Zoe (Guest): I don't fully know when I got it because it took me so long to get diagnosed. But I wanna say it was before my eighth grade year, so I was roughly like 13, 14? I think 14, roughly.
[00:03:52] Jill (Host): Were you just kind of busy and doing your running and your theater and your everything and then, and then what happened?
[00:03:59] Zoe (Guest): Everything became increasingly difficult within like a really short time span, and I just thought it was normal. I was just like, Oh, I mean, I guess stairs get harder as you get older, you know? I guess like normal things just sometimes don't work anymore.
[00:04:14] Jill (Host): You were in eighth grade and presumably you were busy doing your thing, your running, your theater arts, all your activities, and then what happened?
[00:04:24] Zoe (Guest): I, I just started noticing that everything got just increasingly difficult. Again, like I thought it was, I thought it was normal. I was like, Oh, this is fine. You know, this is common maybe, and it, it took me, it took me a while to speak up because I just didn't really understand what was happening and I just kind of accepted it and just moved on.
[00:04:45] Jill (Host): So you just thought that in eighth grade you were kind of already getting old and things were just supposed to get hard?
[00:04:50] Zoe (Guest): For some reason I just accepted it. I was like, Oh, I'll just work with it.
[00:04:54] Jill (Host): Do you remember what kind of symptoms you were feeling at that time?
[00:04:57] Zoe (Guest): Yeah, I do actually. I, I remember vividly. I would, I was in middle school, so I would be like walking through the halls trying to get through people. We had like an odd amount of staircases, too, in my middle school, which was hard because - stairs! - And so I would have to like take a break halfway up or like, once I got to the top, I'd have to like quickly run to like a wall and like pretend to be on my phone as if I'm texting someone. I'm just breathing.
And like once I'd ever get to a class, I would have to sit there for a while and just like meditate and just like ex, you know, just, it's fine, you know, everything's okay. I can breathe. And it's, it took a while for me to like understand that this is a problem.
[00:05:32] Jill (Host): So that's interesting to me that your first instinct was to, like you said, go to the wall and pretend like you're looking at your phone, because I think I've had that instinct for a lot of my life also to kind of like pretend like everything's fine. Nothing to see here. Even as an eighth grader, it was your instinct to kind of just gloss over it and not say, "Help. Help. Something's weird. Can't walk up the stairs."
[00:05:55] Zoe (Guest): I've always been the kind of kid, like even growing up, like I would stub my toe or I would somehow get like a scrape on me knee and just like move on, say absolutely nothing. Just tolerate it for no reason either. I just did. It was interesting. So I guess it just kind of followed me through like middle school too.
[00:06:12] Jill (Host): How long did that go on for?
[00:06:14] Zoe (Guest): I guess even still today, because I remember vividly a few days ago getting into my friend's car. I fully like whammed my elbow and like hit my funny bone, but stayed just stone cold, sat down.
[00:06:27] Jill (Host): [Laughs] You're the no drama lama. So when did you speak up and start seeking answers about what was going on?
[00:06:38] Zoe (Guest): I think I was talking to my dad like in the middle of my eighth grade year and was just saying, Oh, you know, it's been a little bit harder to, um, 'cause I was in a show at the time I was in, I think it was Thoroughly Modern Millie, and I was like, Oh, it's been a little bit harder to like get to my spot on stage because I have to, I have to run like across the building and then to the other side of the auditorium.
And, and he was like, "Oh, you've always been a, you've always been fine. You hate running, but you've always been okay at it." And I was just like, "Yeah, it's just gotten a little bit, a bit harder, you know?" And then I just like, since I told him that, I just kind of kept like telling him that for, for a little while.
And then he started getting genuinely worried. And then I started getting worried too. I was like, Oh, I don't know really what, what's going on. But I think it was in ninth grade by then, too.
[00:07:20] Jill (Host): Okay. So then how long did it take you to get a diagnosis after that?
[00:07:24] Zoe (Guest): It took me about until the end of my sophomore year in high school because we went to just my doctor who I go for checkups and everything, and she's like, "Oh, it's just anxiety. You're, you know, you're a little bit dehydrated. You don't get enough sleep." And I was like, "Yeah, I mean, that's true, probably."
And then it just, it kept getting worse and it kept just going on and on and on. And so we'd go back and we went to another doctor and they were like," Oh, you're just anxious. You know, you're just dehydrated, you know?"
Kept going, you know, and everything. Yeah. And it was, it was really rough because it's hard having something that you know is going on, but like no good way to express it because they don't know how you're feeling. And then having other things that are also symptoms that they think it is.
[00:08:01] Jill (Host): Yeah. So that sounds tough to feel like, okay, yep, I'm just anxious and dehydrated. And probably there were days where you felt like, and yet..., you know, and yet I don't feel stressed out and I drink a lot today, so what's going on? How did, how did you get from the point of assuming that they were all right and kind of gaslighting yourself to getting to a point where you thought, "Nope, nope, time to go for some other explanation?"
[00:08:27] Zoe (Guest): It was probably after my second visit with my doctor. I remember, like, I walked out of the room, I was with my parents, and I'm just like, She's wrong. I slept great last night. Like, I have had a lot of water today. And so like, I, I knew there was a difference between like heart racing and like feeling like you're on the verge of a cliff and then just being anxious.
I, I could tell that there was a severe difference with that, and they were like, "We don't know, you know?"
[00:08:50] Jill (Host): Yeah, you're reminding me of a moment when I remember talking with my parents about what turned out to be my POTS, but in within my family, it just made perfect sense to everyone that, oh, Jill is the one who cares too much about everything, so that must be causing that.
And looking back, it's so funny that at the time I bought it and I was like, Yeah, yeah. It must be that. How, How does that account for all these symptoms? It's just so funny looking back at what we can convince ourselves of.
[00:09:20] Zoe (Guest): Oh, absolutely. Yeah.
[00:09:22] Jill (Host): Okay, so once you got a diagnosis, did that lead to much improvement for you?
[00:09:29] Zoe (Guest): It definitely made things easier just because now I knew that my feelings were valid, like there was actually something going on. I finally felt like secure, kind of like it was still the same, but I just felt better knowing that like, Oh, you know, I'm not, I'm not alone in this. Like, this is a common, not common, but like, it's, it's a, it's a legit issue.
I immediately got, like on the car, right home, I went on Instagram. I started like looking up POTS pages, 'cause I know someone who has PANS as well and I was like, "Oh this is funny. We're POTS, you know, POTS and PANS and everything". And so I reached out to her and she's like, "I actually don't know anyone with POTS." I was like, "Oh, okay, cool. You know me now."
[00:10:07] Jill (Host): Have you found any things that really, really help?
[00:10:10] Zoe (Guest): Definitely a lot of water. I constantly have one on me. And I increased my salt intake as well. I get those like little packets from restaurants and just like keep 'em in my backpack and like I have a little hoard, and just I guess getting a lot of sleep does help, but I often, I'm not able to because I have school and I have aerial silks and I have just all these things like kind of taking over a little bit.
But I try, I do my best. I take naps routinely. And, yeah, I'm still looking for other things that help, but that's been about like my main things I've been doing.
[00:10:42] Jill (Host): Have you had to make much of a change to the activities that you do?
[00:10:46] Zoe (Guest): A little bit. A little bit. I talked to my, my coaches, my at the studio I go to or like my gym and everything.
I just kinda like let them know what was going on. I explained, I reached out. I was like, "Hey, so I have this. Now I know why. I'm a little bit behind in your class. I'm a little bit more tired." And they're like, "Oh, that's, that's fine. If ever you need anything, just let us know." And, and they still, they still push me really hard because we have a rarely, like we have an awesome team there. I love it. And they still push me, but they understand if like, there's one day I just legitimately can't do stuff and like I just need a break and extra water. And I don't run anymore. I hate running.
[00:11:21] Jill (Host): Presumably you're still in high school, yes?
[00:11:23] Zoe (Guest): Yes. I'll be a senior.
[00:11:25] Jill (Host): Okay, so now if you have trouble climbing the stairs, do you still pretend like you're just looking at your phone or are you kind of like more open about what's going on with you at this point?
[00:11:35] Zoe (Guest): It really depends where I am at. If I'm around people I know or just like a few kids at school, 'cause on my Instagram and my bio, it says POTS and like I, I post a lot about it too. And so a lot of people know about it and so they don't really assume anything if I'm like puffing and puffing, like on the side of a wall, just like needing air.
And I, I do take it slower, definitely. I'm not as, not as speedy definitely.
[00:11:58] Jill (Host): What are the symptoms that bother you the most?
[00:12:01] Zoe (Guest): Definitely the amount of fatigue. That's been something that's been really difficult because I'll be sitting in class, I'll be completely fine, and then my body will just like shut down and I need to just like sit and like just stare at something or even just like take a mini nap.
And it's really difficult because like there are so many classes that I love, but I can't fully give it my all for some of the days. And then definitely for aerial too, it's really hard cause we'll be, we'll be like practicing a certain routine and then I really wanna get it down, but my body won't let me that day and so I have to come in extra or I have to explain to them and then I get extra help later.
So it's, it's very time consuming. Definitely.
[00:12:36] Jill (Host): Yeah, that's one of my biggest things. Now, are you ever doing something on aerial silks, maybe way up high, maybe dangling by one knee or one foot, and then the fatigue hits you or dizziness hits you? Have you ever had anything scary like that happen?
[00:12:52] Zoe (Guest): Oh yeah. Not a ton. But definitely it's happened more than five times. I remember there was one day we were learning, I think it was, it was our double salto, which is basically where you're like in a star position and you flip through the silks cuz there are two of 'em twice. And I just all of a sudden got so unbelievably dizzy.
It wasn't the feeling of like, when you're about to pass out it, everything just gets brighter for me, usually that was like also one of my, my main symptoms. And so I was up there every, the world's like getting brighter. I'm like fully channeling away from everything. So I quickly dropped into like a little, um, ball and just hung there for a minute, tried to let it pass, and I ended up just getting off and sitting for a while. Um, but it, it scary you, especially when you're up like 40, 30 feet roughly, just hanging. [Laughs]
[00:13:40] Jill (Host): Yeah. Yeah, I can imagine. Now you said the world gets brighter. I have not heard people talk about that. I've heard people say they get gray outs or they get floaters or they get fuzzy, but talk about what happens for you. What is this brighter thing?
[00:13:57] Zoe (Guest): I've never had floaters or anything, but I know for me, I, I've only passed out once. I've heard it's common and uncommon. I think it just depends on the patient from what I've been told. And for me, when that happens, everything gets dark, or when it did happen, everything just immediately got dark.
But since middle school, everything would just get really, really bright when I was really winded, when I was really tired. And sometimes my ears would start like doing that like little ring thing and then I'd know like, Oh, whatever this thing is, it's happening. You know? And it's, it's, it's, it's a really weird effect. It's kind of like in movies when people are starting to like, see the light. And so first time it happened to me, I was like, What?! [Laughs]
[00:14:34] Jill (Host): [Laughs]
[00:14:34] Zoe (Guest): You know? But now I know. It's just, it's just this...
[00:14:37] Jill (Host): ...just the thing.
[00:14:38] Zoe (Guest): Yeah. Yeah.
[00:14:40] Jill (Host): Does POTS affect your social life very much?
[00:14:42] Zoe (Guest): It actually has helped it a little bit, a little bit because I've been able to get in touch with people who also have it, and I even, I'm even like on a group chat on Instagram, we just talk about our daily struggles with everything, and it's fun to kind of open up about it because not a lot of people know about it. I think like only one other person at my school has it, but they're not really, they don't really talk about it a ton.
And so it's been, it's been nice to kind of help spread the word about it too, because everyone I've talked to is like, Oh, I've never even heard of that. I'm like, Oh, well here, you know? And I kind of explain it. Yeah, it's been nice to just help people kind of get better understanding of this community.
[00:15:17] Jill (Host): That's great. So you have kind of told your classmates about it and they're understanding and supportive? Is that what I'm hearing?
[00:15:25] Zoe (Guest): Yeah. And then my friend group too, we even, we also have, we joke about it a ton. We're just like, "ah, you know, Zoe's always dazed out, you know?" And I'm like, "Yeah. I'm just, you know, chilling." Yeah, it's been nice to, to open up people's eyes kind of about it.
[00:15:39] Jill (Host): That's wonderful. Were you ever shy? Like would you have any advice for people who have not yet like been super open with their friends?
[00:15:48] Zoe (Guest): I would say it's nothing to be ashamed of. Like, it's completely okay. It's fine. And if you have a good, like supportive friend group, they'll totally understand and just do whatever you're comfortable with. Like, there's no need to be open about it. There's no need to talk about it. It's just, it's fully up to you.
And if people ever assume anything, just don't take it to heart. People just assume a lot of stuff, you know? And so just get past it and, and it'll be okay.
[00:16:12] Jill (Host): Awesome. Has POTS taught you any life lessons?
[00:16:16] Zoe (Guest): Yeah, actually. Definitely don't take for granted the abilities that you have, with or without POTS even, just because some days will be better, some days will be worse. So just overall except whatever happens and just enjoy it.
[00:16:31] Jill (Host): Excellent. Is there anything you know about POTS now that you wish you had known sooner?
[00:16:37] Zoe (Guest): Yeah, I wish I knew about the motivation drops that sometimes I will get, because sometimes it'll be really difficult to get water, to get out of bed, to go to class, you know, to, to go to silks and everything. It'll be really difficult to have that motivation just because sometimes I know what's gonna happen. Sometimes I know I'm having a flare up. Sometimes I know the day is just not gonna be as good, but I still have to get up and I still have to go. And again, it'll all work out. It'll all be okay just as long as I get there.
And I wish I had a better mindset of, like, in the beginning of how to handle those la the lack of motivation and what to do from there.
[00:17:10] Jill (Host): That's really interesting. Do you mind if we go a little deeper into that? Because I know there's a lot of listeners who are gonna say, "Yes, that's me. I understand that." Can you talk a little bit more about like where are you typically when that feeling hits you, and what does it feel like, and then what do you do about it?
[00:17:28] Zoe (Guest): I would say sometimes, like right when I wake up, right when my 30 alarms go off, I just kind of sit there and I'm like, All right, I have to stand up now and then go shower.
I'm a morning shower person because if I do it at night, I will do it at like 1:00 AM just because I'll like procrastinate my way. And so I, I take like cooler than warm showers just so I don't overheat and everything, but it's hard to get out of bed and like just know that I have to go do that and just know that I have to get up and like take the first baby steps of the day.
And then it's always like right before an event too, like my friend wants me to go out and I'm maybe in the middle of a flare up, maybe I don't want to go out and interact with people just 'cause I'm not in a good mood or anything. And sometimes I've just even skipped aerial class because I'm just like, it's just not a good, it's just not a good day for me.
[00:18:11] Jill (Host): When you do get yourself going, do you have anything that you do or say to yourself and then does it get better quickly or does it usually stay tough for a while?
[00:18:22] Zoe (Guest): I either do one of two things. I either just kind of remember why I'm doing it. I remember what I'm working towards. I remember the goals I have set, um, like what's coming up, and then that'll kind of help me to get up, you know, take the first steps and move on with it.
Or I just kind of say to myself, like, "do like one small thing. Just at least sit up from the couch. And then second step is standing and the second step is walking over to the stairs, Go up to your room, you know, get dressed. Just take it one step at a time 'cause once you at least do one of 'em, your body will just kind of stay in motion and continue with it."
And my dad actually taught me that. I just kind of, you gotta have building blocks with it. It's been something to learn, but it definitely has helped.
[00:19:02] Jill (Host): That's great. That's really helpful. I think. Kind of like those are the make or break moments, right?
[00:19:07] Zoe (Guest): Yeah, definitely.
[00:19:08] Jill (Host): If you give in to every one of those for too long, then you have stayed in bed a lot, and that at least for me is kind of the start of downward spiral.
[00:19:20] Zoe (Guest): Yeah. I'll sit and I'll stay. [Laughs]
[00:19:22] Jill (Host): [Laughs] Nowadays, what counts as like a POTS related victory?
[00:19:26] Zoe (Guest): Definitely just the feeling you get after doing something just, Oh, I accomplished this, Like I accomplished this. You know? Even though it was hard even, even though I had to work towards it a lot and I gave it my all, I accomplished it and I'm just proud of myself.
[00:19:40] Jill (Host): That's great. Yeah. Are you up for doing a speed round where we ask you to say the first thing that comes to mind?
[00:19:46] Zoe (Guest): Yeah. I'll do my best. [Laughs]
[00:19:49] Jill (Host): What is your favorite way to get salt?
[00:19:52] Zoe (Guest): Salt packets or those little salt shakers.
[00:19:55] Jill (Host): Just like you lick it off your hand? Not even on any food?
[00:19:58] Zoe (Guest): No. I dump it in, I dump it in water or like just on.
[00:20:00] Jill (Host): Ah, okay. What is the drink that you find the most hydrating?
[00:20:05] Zoe (Guest): I use liquid IV, which has been really nice.
[00:20:08] Jill (Host): What is your favorite time of the day and why?
[00:20:11] Zoe (Guest): I am a night owl, and definitely wise, because it definitely gives me the, the mental freedom of like, Oh, I have all this open time, even though I'm hurting my sleep. I have so much open time.
[00:20:21] Jill (Host): Where is your favorite place to spend time and why?
[00:20:25] Zoe (Guest): Anywhere with my friends usually. It's just, it's a nice buildup or the, or the theater room in my school.
[00:20:32] Jill (Host): How many other POTS patients have you ever met face to face?
[00:20:36] Zoe (Guest): Only one.
[00:20:37] Jill (Host): What is one word that describes what it's like living with POTS?
[00:20:42] Zoe (Guest): Relentless. But that relentless symptoms and relentless motivation too. It's like a, It's a double edged sword.
[00:20:50] Jill (Host): Oh, I like that. What is some good advice anyone ever gave you about anything?
[00:20:56] Zoe (Guest): Just do the thing you're here. You know, Do do it. Really weird advice, but it's worked.
[00:21:01] Jill (Host): Yeah, that's funny. That makes me think about my husband sometimes, where if it's like a weekend and I'm planning to exercise and I'm like getting up the nerve to exercise and I'm like trying to get just the right hydration and just the right this, and in the meantime while I'm taking all this time to get everything right, he just goes out and he does it and he's back and I'm like, "Ah, geez. If I had just done it by now, it would be all over."
[00:21:24] Zoe (Guest): I get that.
[00:21:26] Jill (Host): What is something small that brings you comfort or joy?
[00:21:30] Zoe (Guest): My dog .A few days ago, I was just really angry. I was just sitting there. I was just so peeved at myself 'cause silks didn't go well and she just came over and sat on me and I was like, This is cutest thing.
[00:21:42] Jill (Host): Aww, sweet. Who is someone you admire and why?
[00:21:47] Zoe (Guest): Definitely my dad. He's just a very inspiring person to me. He has so much that he is done, so much that he does currently, and he's always been my number one fan.
[00:21:56] Jill (Host): Thanks, Dad.
[00:21:57] Zoe (Guest): Yeah!
[00:21:58] Jill (Host): What is something that you are proud of?
[00:22:01] Zoe (Guest): Just the amount of growth that I have gone through since being diagnosed, knowing more than I did before and being able to share it.
[00:22:10] Jill (Host): Excellent. What is the toughest thing about POTS?
[00:22:14] Zoe (Guest): Knowing the abilities I had before, but not being able to reach them anymore has been really like recently difficult as well.
[00:22:21] Jill (Host): What is an activity that you can enjoy even when you're feeling really POTSie?
[00:22:26] Zoe (Guest): I have been binging a lot of TV shows lately and I re-watching as well too. I can just sit stare and it's great. Oh, and painting too. That's another one.
[00:22:36] Jill (Host): Oh, what kind of painting do you like to do?
[00:22:38] Zoe (Guest): I, anything with acrylics definitely has been my favorite. It depends on the POTS day, because sometimes I'll be like really shaky trying to get like fine lines. I'm just like, it's, I can't today.
[00:22:48] Jill (Host): That would be interesting to try to draw or paint the same thing, feeling really POTSie and then versus a day when you were not symptomatic at all and just see the difference.
[00:22:57] Zoe (Guest): I might have to do that.
[00:22:58] Jill (Host): What helps you fall asleep, if anything?
[00:23:01] Zoe (Guest): At night? I don't really know. I have a lot of trouble getting to sleep. Sometimes I'll, I have an Alexa and um, sometimes I'll ask hers to just like, play ocean sounds or just play like white noise or brown noise or any one of those. And that, that used to help in the past a little bit. And now I just, I've been so busy, I'll come home and just like pass out just conk asleep. Different environments, maybe.
[00:23:22] Jill (Host): What gives you energy, if anything?
[00:23:25] Zoe (Guest): Moral support. Definitely. A lot of my friends will kind of help build me up, be like "you, you got it. Just do, do this stuff. You know? You can go to silks, you know, I'll give you extra time to get ready. You know, It's okay. You don't need to rush. Just take your time."
[00:23:38] Jill (Host): What is a gift that you would have sent to every POTS patient on earth if you had infinite funds?
[00:23:44] Zoe (Guest): Just a healthy state of mind. Just, just give everybody love, motivation, and happiness.
[00:23:51] Jill (Host): Oh, that's nice. What is something that you are grateful for?
[00:23:55] Zoe (Guest): I'm definitely grateful for my family. And my dog, she's also family. They've just always, they've been here and it's been really nice.
[00:24:02] Jill (Host): Can you finish these sentences? I love it when...
[00:24:06] Zoe (Guest): I can stand up without it being really, really bright.
[00:24:10] Jill (Host): I hate it when...
[00:24:12] Zoe (Guest): I stand up and it's really bright. [Laughs]
[00:24:16] Jill (Host): People might suspect your a POTSie when...
[00:24:19] Zoe (Guest): ...you have those gallon water bottles off of Amazon that are like the big chunky, and they have the times on the side. I have one of those and I love it.
[00:24:30] Jill (Host): Have you ever had to sit down or lie down in a weird place because of POTS and if so, where?
[00:24:37] Zoe (Guest): I was biking one time and I have a, I have a park by my house that I usually just go and sit out, watch rain, stars, anything, and I, I didn't fully make it there, and so I decided, all right, I'm in a field, and so I just like snowman in the field. It was also blaring sun, just like laying starfish.
[00:24:55] Jill (Host): [Laughs] Another good reason to live in the country and not in the city. I swear you would not get away with that for very long in San Francisco. Okay. I just have a couple more questions. What do you wish more people knew about POTS?
[00:25:10] Zoe (Guest): I wish they knew the amount of weight it'll sometimes bring a person, like they'll be smiling, it'll be okay. It'll be an okay day. But it still is just really difficult cause they know what they have to do next and they know what they have to do tomorrow and just that they need support overall and just don't rush them and it'll just clear out.
[00:25:29] Jill (Host): That's a great answer. Is there anything you would like to say to your fellow POTS patients who are listening?
[00:25:36] Zoe (Guest): Thank you for listening. I'm really glad you have been able to meet a lot of you online and just to have such a great community and it's really helped me not only learn, but get a better perspective on who I am and, and like what I need to, to do and what, how I need to live now.
[00:25:55] Jill (Host): And last question, why did you agree to let us share your story?
[00:26:01] Zoe (Guest): I thought it would just be a really cool opportunity because I have a lot of people asking me questions all the time, but I've never been able to give like a good talk about it as well because they'll ask me like, "Oh, well what's like something I can help you with?" And I'll just say like a very generic basic answer and I don't really go into it. And so I said yes because I just thought it would be a really good way to actually share kind of like, what about me than just like a generic answer.
And to have this cool experience and meet you, obviously. I love your podcast.
[00:26:28] Jill (Host): Well, that's great and that's so kind of you and thank you. We really appreciate getting to hear about your story and your insights and you have a lot of wonderful insights and so I know everybody listening is just wishing you all the best going forward.
Hey listeners, I hope you enjoyed today's conversation. We'll be back again next week. Until then, thank you for listening. Remember, you're not alone, and please join us again soon.
[00:26:56] Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you.
This show is a production of Standing Up to POTS, which is a 501(c)(3) non-profit organization. You can send us feedback or make a tax-deductible donation at www.StandingUptoPOTS.org. You can also engage with us on social media at the handle, @standinguptopots. If you like what you heard today, please consider subscribing to our podcast and sharing it with your friends and family. You can find us wherever you get your podcasts or at www.thepotscast.com. Thanks for listening.
© 2022 Standing Up to POTS, Inc. All rights reserved.
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