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Jill Brook: Hello, fellow POTS patients, and beautiful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Aryn. Aryn, thank you so much for joining us today.

Aryn: Hi, Jill. Yeah. Thank you so much for having me.

Jill Brook: So we're excited to get to know you a little bit. What are the basics we should know to kind of set the scene?

Aryn: Oh gosh, the basics. I've been diagnosed with POTS since about 2020. My journey to getting diagnosed was a little bit complicated, I think as most people's diagnosis is. The journey to stability was also difficult as we know. And I was pretty stable for the last few years up until March when I kind of got hit with a pretty bad flare that I never had experienced during my POTS journey.

So I'm kind of navigating POTS in a new perspective now, [00:01:00] and my life looks a lot different right now than it used to. And so that's just kind of a little bit about my journey and everything with that.

Jill Brook: Yeah. Yeah. And we're excited to get into that. So where are you? I know it's hot where you are, but I don't know where you are.

Aryn: Yes, I actually just moved from one hot place to the next. I was in Arizona and I just moved over to North Carolina.

Jill Brook: Okay, wonderful. And how would your family or friends describe your personality?

Aryn: Oh, goofy, introverted, extroverted, silly, outgoing, introspective.

Jill Brook: And I know you said things had changed a lot lately, but let's jump to before POTS hit, let's say 2019. What were your favorite activities? What was your life like at that time?

Aryn: Yeah, so I actually grew up playing soccer and I had just [00:02:00] stopped playing soccer right after, in about 2017. So 2019 I was still trying to stay pretty active. I worked out pretty regularly, but not as physically exertive as I used to. I was in college at the time and so I was in doing my undergrad program and yeah, I was pretty, pretty social, lots of activity. It's kind of what I was up to at that time.

Jill Brook: And then what was the first sign of POTS?

Aryn: I personally believe that I've probably had it my whole life. But around 2019, 2020, I started to notice I wasn't able to keep up physically as much as I used to. So, like I said, I grew up playing soccer and the workouts that I would do, I just couldn't exert myself as much anymore. [00:03:00] And I knew I wasn't outta shape. And so, I just kind of told myself, maybe I'm outta shape, maybe I need to try and keep up with this and exert myself more maybe. But I had actually had this new symptom that a lot of, I know is common with a lot of POTS patients, where you'll see your heartbeat in your, through your vision. And so when I would go from sitting to standing, I would see my pulse. And it was the weirdest thing. And I remember, I was seeing a therapist at that time, and I remember mentioning it to them and they said, oh, that's really funny, I actually have POTS and I wonder if you have that as well. And from that point, it kind of, more physical symptoms started to slowly show up until it, it got pretty bad at one point. But that was definitely my tell tale sign that something else was kind of going on.

Jill Brook: Wow. So you had a therapist, I mean, talk about the power [00:04:00] of awareness. But I know that in the beginning you alluded to having a little bit of a difficult journey to diagnosis. Your therapist spotted it so early on. What happened that getting a diagnosis wasn't easy and quick and straightforward.

Aryn: Yeah. It was super interesting. So once my therapist at that point had mentioned POTS, I had never heard of it at that point. And that was probably late 2018. No, that was probably early 2019. And like I said, the physical symptoms kind of started to show up more and more, so I wasn't able to exert myself as much anymore, seeing my pulse through my vision, palpitations, tachycardia, those things started to show up a lot more. And until I had a really bad flare I was at home and my heart rate just shot to 1 75 or 180, and I was just laying in bed. [00:05:00] And yeah, and I, and I was like, okay, maybe I'm like having a weird panic attack that I've never experienced. And so I tried to kind of calm myself down from it and nothing was changing. You know, I was breathing slow and it was still really, really high. So I ended up going to the emergency room 'cause I had assumed something was really wrong and they initially thought that I was having a mini heart attack.

And so they were treating me for a mini heart attack and trying to diagnose what was going on. And so after they did tests, they found out that that's not what it was. And they ended up admitting me to do further testing to try and figure out. Because having my high heart rate like that had lasted so long and it wasn't coming down and they were trying, you know, multiple different things.

And so I was admitted for I think two or three days, and this was right around the time of COVID. And so they had [00:06:00] suspected maybe it was COVID, and these were the symptoms that I was experiencing because of it. However, I tested negative, and so they were just ruling out a bunch of different things and we just weren't really getting any answers.

And I remember a cardiologist came into the room and said I can't see anything wrong with you, but I'm gonna prescribe you something for anxiety. I knew it wasn't anxiety. I had experienced anxiety for so many years and it, it had never manifested in this way. And I remember, I remember telling him, you know, I know something else is wrong. I really need you guys to look into this because I just, I don't feel like myself. I've been an athlete my whole life and something has like completely flipped. He didn't really listen to me. They discharged me and sent me out to another cardiologist, and that [00:07:00] cardiologist looked at me and said, look, you're a young, healthy, active adult, I don't think anything's wrong with you. I'm not going to treat you. And I just remember saying, please, like I like, my life has completely changed in terms of things that I'm able to do now. I know something else is going on. Then I mentioned that that therapist had mentioned POTS and I said, I'm having this, this symptom specifically alongside the other things and I wonder if you would be willing to look into POTS. And this was also at the Mayo Clinic out in Arizona, which is supposedly supposed to be the top well known for cardiology. And I just didn't feel like I was getting any help or any answers. So they kept kind of, ignoring me and trying to kind of like push away to say, hey, you know, we think you're anxious. We want you to take this anxiety medication. And so then I started doing my own [00:08:00] research and I remember my last, it was like my third or fourth attempt with this cardiologist, and I was like I had heard of the tilt table test. And so I said, could we please try doing a tilt table test because I've heard that really can give a clear diagnostic for patients with POTS.

And so we did the tilt table test and immediately my results came back as positive for somebody with POTS. And so that was kind of the difficulty in the journey, right? It's, it's so crazy.

Jill Brook: My goodness.

Aryn: It just, it took so much. Yeah.

Jill Brook: Wow. Well, good job knowing to ask for it. And what a good lesson to everyone that it doesn't matter where you're at, it doesn't matter how prestigious the organization, it is a good thing to be with your own information and to ask. Oh my goodness.

Aryn: Yeah. Yeah.

Jill Brook: Okay. And so once you [00:09:00] had a diagnosis, were they able to do things that helped you very much?

Aryn: So they initially wanted me to take I believe it was Florinef, which I didn't know what Florinef was at the time. And I had had bad, or not necessarily bad, but just not great interactions with medications in the past. And I'm not super fond of, you know, immediately pushing and trying to do a new medication. In some situations, I definitely understand that, but I just didn't know enough at the time.

And so I said I didn't wanna try  Florinef, is there something else that we can do that's maybe less invasive? And so then they had prescribed atenolol. Atenolol didn't work great for me. And then we had tried midodrine. And so I'm sure you know, but  midodrine helps raise your blood pressure, and that helped me so significantly.

It wasn't immediate that I was able to become as active as I was [00:10:00] before, but it got me back on my feet and I was able to kind of be social more. And it, it definitely helped with my blood pooling, I would say. That was a big one. So midodrine, I have been on since 2020 up until recently. So that was like what really helped me.

Jill Brook: And was the whole salt and fluids and compression thing new to you, or had you already been trying some of those things, or did those make a big difference?

Aryn: Yeah, I would say I stayed pretty hydrated because I was already in athletics and working out and everything, so that was kind of already in my routine. Kind of the same thing with supplementing electrolytes. I just do it more now than back then. But I never tried compression socks up until recently. So yeah, those things really, I mean hydration and electrolytes, those were part of my routine, but I hadn't tried [00:11:00] compression socks really. I still dealt with the other symptoms and I just, my doctors kind of just told me, this is just something that you're gonna have to deal with. We can't fix this for you. There's really no aid. And I think that there was still a lot of research going into POTS and who could be affected and that kind of thing. So I felt like I was on my own really at that point. But, yeah.

Jill Brook: So, okay. So you said that the midodrine helped quite a bit. That it got you a little more social up on your feet a little more now, and that you had also in your first few words mentioned a new flare with new symptoms. So was that your new baseline for a while? Like so, so what happens from there in the story?

Aryn: Yeah. So, basically from 2020 up until March of this year, I worked really hard to get to a point of stability and I feel like I've been really lucky to be able to do that, 'cause I understand [00:12:00] that that's not the case for everybody. So I really was working out hard over the last few years, just making sure that I stayed hydrated. I had smaller flares in between that point, but I was able to kind of control them much, much easier, and they definitely did not last as long. But in March of this year, I had a really bad flare and it ended me up in the hospital and I hadn't been to the hospital for my POTS for several years at this point.

And I started dealing with kind of like a constant snowy field vision where I get black and white spots in my vision. So I've been dealing with that since March. I've been having blood sugar issues that I've been able to kind of control a little bit better with diet and looking into things like that, but it's, I still have to be careful around it.

[00:13:00] I can't work out right now. So I try to walk every day as much as I can, and that has definitely helped me not to regress even more, I think. But yeah, my baseline is completely different right now. My heat intolerance I had before, but it's definitely much more significant now. So I feel like I'm kind of living a life right now, walking on eggshells trying to figure this out because like I said, it's, it's a very different place currently than how it was before.

Jill Brook: So now that you're dealing with a different style of POTS that has different symptoms, do you like start over again, trying all the things that you used to try that didn't work, or are you finding different strategies are better? Or what is your approach now?

Aryn: Yeah. I feel like I really started over from square one, which obviously I [00:14:00] don't wish that you know on myself, but I feel like it was very beneficial for me to dive into my own research and learn how to advocate for myself even better. I was just, I went on a Reddit forum for POTS and was just kind of reading other people's experience and how they've dealt with bad flares and it was just such a new experience to me.

So, yeah, I was trying everything. I tried two new medications, which we've now found out beta blockers aren't great for me because they lower my heart rate too much. So typically when I'm not active, my heart rate stays pretty low. I don't have those adrenaline rushes much anymore. So, yeah, the beta blockers did not work for me. I ended up going back on to midodrine and I've stayed on midodrine. Compression socks are my daily go-to now.

Jill Brook: Do you have a [00:15:00] favorite brand?

Aryn: I have used, I believe they're called VIM & VIGR, and I believe, I think I might, it might be wrong, but Wellow. I think is the other one that I've tried, and probably VIM & VIGR is my favorite, but Wellow is not bad either. And I stick to a schedule of my electrolytes, so it, I feel like everything's pretty much on a schedule. I, I'm watching what I eat. I'm watching how much water I drink in a day making sure I get some sunshine, making sure I get some steps in or if I don't get a walk in, move my body in some sort of way because I've found that sitting for me all day, 'cause I work, work from home as well, so when I'm sitting I just feel kind of worse. And sometimes even when I do feel worse, it just takes moving my body a little bit to get that blood flowing to feel just a little [00:16:00] bit better to kind of help me into the next day, not be so struggling with other symptoms and that kind of thing,

Jill Brook: You know what's funny? I feel like this is such an underrecognized problem in POTS, the sitting problem. I have this problem myself, and I've talked to so many people who have had this, and I think maybe a lot of POTS patients do feel better when they sit, and maybe it's a whole lot better than standing still, but I do feel like there's a core of us that, that really struggle with sitting because it's, it's like, I don't know if you feel this way, but it's like my, my circulation needs some help. If I don't help it by moving my muscles and changing body positions, then it's just not gonna flow on its own. Do you feel that way?

Aryn: Yes. No, that's exactly. How I feel. And it's funny, like almost trying to explain that to people that haven't been in that situation because it's a interesting thing to try and explain. But I feel the exact same way. If I am sitting all day and that [00:17:00] is all that I do for the day, I really struggle towards the end of the day. So I, I kind of have to give my body that circulation myself through movement or even if like I was bed bound in March when everything happened, and so I was trying to learn different movements or smaller exercises that I could do even while I was in bed. And that helped I think a lot to get me back on my feet, but I definitely can relate to that feeling.

Jill Brook: I know I have to say sometimes I will like, I find that that the longer I go sitting, the less energy I have. And I've learned that like it's so hard to get going again once I've stopped for a while. So I try to never sit too long and I will do the weirdest things like in my backyard, I'll just like dash out and I'll just make myself do 10 cartwheels, because it gets the blood moving and like sometimes it'll be like some pushups or sometimes they'll be just like laying in the ground with my feet in the air. Like if people saw me, they would just wonder what the heck I'm [00:18:00] doing.

Aryn: Yeah.

Jill Brook: If I don't do that, then it's like by the end of the day, I'm comatose. And so it feels good to talk to somebody who maybe understands that.

Aryn: Yes. No, I, I find myself, I even got a walking pad during the day. So even if I need to take five minutes every hour and walk on the walking pad. But I found myself doing silly things also. I would do standing marches for a while, so my knees to my hands and I would just, you know, anything. And so, yeah, I definitely relate that if I don't have movement of some sort, by the end of the day, I, I feel worse almost. So that's interesting that you've experienced that also, because when I've read, a lot of people maybe haven't had that experience and so I always wondered was that kind of a universal or maybe a, some people POTS thing, so.

Jill Brook: Yeah. Yeah. I've always been like a little envious of people who could sit still for [00:19:00] a long time. And I know that sometimes they're sitting still and they're on the sofa because they're miserable for a long period of time. But, I've never been able to get comfortable. And so I don't watch movies. I don't sit for anything unless I have to. And and I do, I look at, I look at people sit for a long time and I like just get envious. I'm like, oh, they look so comfortable.

Aryn: Right. To be able to just rest and be at peace for a moment.

Jill Brook: But on sort of a related note, can I ask you, so as somebody who went from being, it sounds like a really hardcore soccer player, not being able to exercise very hard, I mean, other than your marches and your walking pad and things like that like how hard is that? Because exercise like gives you endorphins, it gives you better sleep, it gives you stress relief. Like have you found anything to replace exercise to help accomplish those things? Or do you grieve it or like what does it mean to you to [00:20:00] like have that taken outta your life?

Aryn: Yeah, I definitely grieve it. It's been one of the more harder aspects for me because activity was and is such a prominent thing in my life. Like I said, I grew up being active and right before this all happened, I was weightlifting pretty heavy, and CrossFit, deadlifting, squatting, that kind of thing.

And so, it's a huge change when your body suddenly can't take on that load anymore. I think now, so it's been about almost five months. And so I think now I'm more accepting of it and I'm, I think I was very hard on myself in the beginning because to a degree it kind of feels like, oh, like in internally I'm thinking to myself, maybe you're just outta shape.

Maybe you just need to do things differently. But realistically, that's just not how it is for me right now. My body's trying to heal and pushing itself [00:21:00] more isn't gonna do much for me right now. So it's been hard. But I, I do enjoy my daily walks now. That's probably my, that's my biggest activity of the day.

I do it every night with my dogs. So, and I'm really thankful that I am able to do that now because it took probably two-ish months or so to really even be able to walk more than 10, 15 minutes. So I'm taking the little victories and I'm hopeful that maybe someday I'll be back at that point and able to do things like that again. I can do small things sitting but you know, nothing like I used to.

So I would, I would say my walks have been my supplement for that. Small, short yoga type movements. Stretching at home really helps for me. So I think accepting that my body's in this place and treating it how it [00:22:00] needs to is, has really helped with the grieving aspect of it.

Jill Brook: Yeah. Yeah. Good for you. That's great. Do you have any other things that you do to help cope?

Aryn: That's a great question. I think staying connected with people that really support me and want to take the time to understand what I'm going through, because I think for a lot of people it's hard to understand when you're not going through it directly. So talking with friends and whoever else that really wanna just support you the best they can through this process.

I'm lucky I have an awesome partner who has gone out of their way so much to help me in this process. So, I think that's great. Journaling has helped me too. Finding the POTScast. No, really, because I think it can be such an isolating world having POTS and trying to navigate that. And so I found the [00:23:00] POTScast and I would just listen all the time, and that was really helpful to kind of understand that I wasn't alone in this and that it's such a diverse, huge diagnosis, right? There's so much that we deal with that we go through, so many different symptoms and that kind of thing. So finding the POTScast and other podcasts like it, I would say helped as well. And advocating for yourself. I will say that's been the biggest, one of the biggest things, so.

Jill Brook: Yeah. You know, I think everyone has said that so far, and it makes me worry that anybody who didn't advocate for themselves doesn't have the diagnosis, doesn't know what their problem is yet, and is still suffering with just no answers.

Aryn: So hard because our healthcare system is unfortunately so broken, and so many of us experience that. And so [00:24:00] even when you are advocating for yourself, it can be hard. And so, like you said, it's, it's sad when you know and...

Jill Brook: you know what's funny is on that topic. Boy, when you say that you were at the Mayo Clinic Scottsdale, we have interviewed some of the top POTS experts in the entire world who are at that institution, and there's others that we have not interviewed, but are very top, top, top experts. But it's just a reminder of how siloed medicine can be to think that there are cardiologists who are sitting in the same building with some of these top experts who just didn't know to do a tilt table test and that you had to ask for, it kind of blows me away. And I, I get that maybe there's a lot to learn and know in medicine and nobody knows everything, but it is a little disappointing.

Aryn: Yeah, and I will like share this bit. It was really hard when I had this flare because I was [00:25:00] kind of a back burner patient. I had my annual visits to get my medication and that was that really. But when this happened, I had to reach out to the team and I initially tried to get in with the cardiologist and they wouldn't get me in with the cardiologist. They wanted me to see the, who was it, nursing assistant or whoever works on his team. And I had seen them, and it was just so disheartening telling them all my symptoms and being told at the end of my appointment, even when I am, you know, my life took a 180 completely, and to be told I need to wear compression socks, I need to drink more water, and I need to work out more. And I'm sitting there absolutely beside myself like no, you don't understand, I am an active person. [00:26:00] Like I, I am doing all these things I can't right now and I need to figure out what's going on. And yeah, I was just, I wasn't heard at all during that process and I remember looking through my patient notes after the appointment. Nothing that I had mentioned to them was, was listed. It just said patient is advised to hydrate more and supplement with compression stockings, and patient will be seen during next annual. And I, I just felt so failed by the system and failed by this team that I had been with for so many years. And I at that point thought the same thing as you, that I can't imagine people that can't advocate for themselves as much, how they're managing and the process that they're having to go through, 'cause here I am in the cardiologist's office and I'm not even being heard. And so, that was a really, a really difficult thing. But [00:27:00] I'm hoping to find a new provider that's, you know, that will listen and, and I know that they're out there, so.

Jill Brook: Well, I was gonna ask, so you've moved from Arizona to North Carolina. What, you start over looking for a new POTS doctor there?

Aryn: Yeah, so, I have been scouring the internet. I feel like a lot of people will write about their experiences, whether it's through Reddit or some other type of online forum. And so I've reached out to a couple different offices but it was really difficult to get a referral from my cardiologist in Arizona. They were weird about writing the referral. And I just received it. It took about two, three months maybe, and they finally sent it over to one of the doctors that I had mentioned about here in North Carolina. So I heard it's a long wait list. So that's a [00:28:00] difficult process, but I think that's, it seems like that's how it is everywhere right now.

So I'm hoping to maybe get a cancellation or, you know, it's just kind of, I have to take it step by step and hope that I can find a good provider that I can trust during this time and hopefully in a good timeframe, so.

Jill Brook: Yeah. Yeah. But I think it's a good reminder that there's only so many answers out there. The research has only uncovered so many things, and so at some point, a lot of us, if we're not satisfied with how we feel on the kind of set things that are available, this is why some of us start trying things and you know, I know that that's controversial and I mean, I'm always looking for things that are safe and healthy anyways, but also might have some useful for, for, my particular medical issues. And, you know, and so there's always a [00:29:00] million things to try and that's a rabbit hole that I think like has no bottom. I think like you can just keep spending time and money and energy and trying and the best you can hope for is to, you know, have none of them turn out to be harmful. And I think you have to be careful, but it's so hard when, yeah, you have to wait so long to get in to see somebody who even knows what POTS is. And then chances are they may not have anything new or different to try that you haven't already tried if you've already been to some of the top places. And so there you are. Well, has there been any silver linings at all?

Aryn: That's such a tricky question. I don't wanna say that having POTS is the end all, right. I think it's taught me a lot about myself and what I'm capable of. Like I said, it's taught me how to advocate for myself more. And I, I think that [00:30:00] there are people that will listen, providers that will listen, and it's, it's really, it's hard, but it's going into that journey, doing the research, and you just have to keep pushing, you have to keep pushing for yourself and whatever diagnoses and potential, you know, comorbidities and things that you're dealing with there, because it's just you're most important, you and your health, at the end of the day, and you just have to keep advocating for that.

Jill Brook: Amen.

Aryn: Yeah.

Jill Brook: Are you up for ending on a little bit of a lighter note, which is a speed round where we ask you to say the first thing that comes to your mind?

Aryn: Okay, let's go.

Jill Brook: What is your favorite way to get salt?

Aryn: Soy sauce.

Jill Brook: What is the drink you find the most hydrating?

Aryn: LMNT electrolyte packets.

Jill Brook: What is your favorite time of the [00:31:00] day and why?

Aryn: Oh, probably early morning, early afternoon, maybe around 10 or 11 because it's sometime after I've woken up, I've taken my medication, I've had some water, and the blood is kind of flowing through my body now, and that's probably around the time when I feel best.

Jill Brook: Where is your favorite place to spend time?

Aryn: Anywhere outside.

Jill Brook: How many doctors have you seen for POTS?

Aryn: Oh my gosh. Maybe eight.

Jill Brook: How many other POTS patients have you ever met face-to-face in the flesh?

Aryn: Zero.

Jill Brook: What is one word that describes what it's like living with a chronic illness?

Aryn: Confusing. Kind of lonely.

Jill Brook: What is some good advice that you try to live by?

Aryn: Be kind to everybody. We don't know what other people are dealing with. And chronic illness, you can't always see [00:32:00] what somebody's going through. So just be kind and understanding.

Jill Brook: What is something small or inexpensive that brings you comfort or joy?

Aryn: I guess the outdoors. That would be inexpensive.

Jill Brook: Also, people won't be able to see you, but you have so many plants and leaves behind you. You must be really good taking care of plants. And I can tell you like nature and I, I, I love it. Your room is beautiful.

Aryn: Maybe plants is my other one. I do love plants. I think that helps me to cope as well because it's something that I can pour into. And it is, it's not a physical, it's not very physically demanding for the most part. So I do love my plants.

Jill Brook: You do, you have like a ginormous one there. That's very cool. Who is somebody that you admire?

Aryn: A lot of people. Yeah, my partner, my friends, family, lots of different people who advocate for this, what we're talking about, and yeah.[00:33:00]

Jill Brook: Do you have a favorite POTS food or POTS meal where like you can rely on it to help you feel good?

Aryn: I'm now learning that a lot of people will say a Diet Coke and McDonald's fries. So, sometimes when I, I'll get a really bad headache and that usually means that I'm low on sodium or something, and so a mcDonald's fry or just some kind of fry and a Diet Coke has, has helped.

Jill Brook: What is something that you're proud of?

Aryn: I would say to get where I am now.

Jill Brook: What is the toughest thing about having POTS?

Aryn: That it can be a pretty invisible illness. And so when you might be really, really struggling, a lot of people might not see that or understand it, and it can feel like your illness can be downplayed sometimes.

Jill Brook: What is an activity that you can enjoy even when you're feeling really [00:34:00] POTSie?

Aryn: Stretching, watching a movie, putting on a show, and just kind of laying on the floor, having floor time.

Jill Brook: What is your pet peeve?

Aryn: Oh gosh, pet peeve. When providers don't listen.

Jill Brook: Do you have any tricks for falling asleep?

Aryn: Try to get ready for bed an hour before I wanna be asleep so my body has time to relax and kind of just shut things down. I don't eat after a certain point, so my body's not active and just trying to not do as much, do as little as you can before bedtime so your body just can shut down, turn on a meditation or sleep time podcast and just try and relax.

Jill Brook: Do you have any tricks for getting energy when you need it?

Aryn: That's a hard one. I can have very little caffeine. So a cup of coffee would be probably my go-to or Diet Coke or even just trying to get a little [00:35:00] bit of movement in. And that seems to kind of help me a little bit.

Jill Brook: What is a gift that you would have sent to every POTS patient on earth if you had infinite funds?

Aryn: Oh my gosh. I think I would do POTS care packages like electrolytes, blood pressure cuff, soy sauce packets, just little things that I think would help me during the day.

Jill Brook: What is something you are grateful for?

Aryn: I am really grateful for my partner

Jill Brook: Do you wanna say why?

Aryn: Yeah. They're just so incredibly supportive, and they constantly go out of their way to learn more about POTS, to learn how it affects me to adjust my life and sometimes their life, if it benefits me, let's say on a, on a flare day or something like that.

And if I [00:36:00] can't do certain tasks like walk my dog or go to the grocery store, they'll step in and help me with that. And it's just been all the world of a difference to have a partner that does their best to understand you and support you, and that's just been amazing for me.

Jill Brook: Yay. Thank you amazing people out there.

Aryn: Yes, and there's many more like that. We just gotta look.

Jill Brook: Okay. Can you finish this sentence? I love it when...

Aryn: It is not too hot and not too cold outside.

Jill Brook: Have you ever had to sit down or lie down in a weird place because of POTS? And if so, where was the weirdest or funniest?

Aryn: Oh my gosh. I would say at a bar. I got hit with a bad flare randomly, and I just had to completely get out of the chair and lay fly on the floor, and it was pretty embarrassing. But there's nothing else that I could do. I just had to wait it out. [00:37:00] And yeah.

Jill Brook: Sticky down there.

Aryn: Yeah. Not, yeah, not comfortable. Pretty gross.

Jill Brook: Okay. I just have a couple more questions. What do you wish more people understood about POTS?

Aryn: That there's so much that goes into it. I think people will hear POTS and do a quick Google search and they'll just say, oh, you just need to wear compression garments and drink more water and you'll be fine. But there's so much more that we all deal with. It's such a spectrum. It's not one size fits all, and it's not always visible. So, I wish people wouldn't assume, you know, that it's always easy.

Jill Brook: Yeah. And last question, why did you agree to let us share your story today?

Aryn: I think getting it out there and talking about everybody's experience with POTS and even in the healthcare system is so important to raise awareness to this and [00:38:00] hopefully change things for the better, have more accessibility to people that might think that they're dealing with this alone, so.

Jill Brook: Right on. Well, Aryn, thank you so much for sharing everything with us today. I know everybody listening is wishing you all the best going forward. Please keep in touch if anything interesting happens in the future, and we just wish you all the best.

Aryn: Yeah. Jill, thank you so much. I wish the same for you and everybody out there listening that, it's hard, but keep going.

Jill Brook: Yeah. Okay everybody, that's all for today, but we'll be back again next week. Until then, thank you for listening. Remember, you're not alone, and please join us again soon.