POTS Diaries with Arianna from Indiana

[00:00:00]

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

Arianna: Thank you so much for having me.

Jill Brook: So, can you tell us some basics about you? Like, where are you? What's your age? What is Arianna 101?

Arianna: I am 23. I am currently in Indiana. I've kind of lived all over, but that's where my parents are for the moment. And unfortunately with POTS, you know, I had to leave college and kind of come home. So I am back, back at the parents house at 23.

Jill Brook: Okay, okay. Well, before we explore that more, tell us a little more about you. Tell us about your passions or your personality.

Arianna: Yeah, so I grew up doing gymnastics from age two all the way until 17, I believe [00:01:00] it was. So, physical exercise has always been super important to me. I grew up in New Mexico and then I went to college at Arizona State. So, I'm a West Coast girl. I love the mountains. I love being outside. I'm a big beauty person I do all of the beauty things, I, that's kind of become my hobby since I've been more sick, so at least I can kind of do that stuff.

Jill Brook: How would your family or friends describe your personality?

Arianna: Oh gosh, I'm a very determined person, I can be a little stubborn at times, but I'm very outgoing, I'm very fun. I usually get described as confident. Little intimidating sometimes but overall I think I'm a really like bubbly, kind of happy to be here, go with the flow kind of girl.

Jill Brook: What are you good at?

Arianna: Oh gosh. I'm really good at social media. That's a good thing. I have [00:02:00] somehow grown a platform of over 200, 000 people in the span of a year, so I would like to think that that's pretty good. I do my own hair all of the time, so I'm always the beauty friend that people go to. I do all my friends nails, and I do their facials, and the eyebrows, and all of that.

I have really good emotional intelligence. I originally wanted to go into psychiatry, so, mental health has always been a really big passion for me, that kind of thing. Yeah.

Jill Brook: Very cool! Do you want to tell people where they can find your beauty stuff? If they're interested? Because I'm thinking, I need this! Where can I find it?

Arianna: Yeah, right. So my TikTok is It's Ari's World on TikTok, and I have some different kind of videos that I have posted with different information on hair care and skin care and all of that stuff. Makeup is huge for me. Yeah.

Jill Brook: Okay, so you mentioned a time in your life when you were doing [00:03:00] gymnastics. So, I know before we started recording you mentioned that now you're in a wheelchair. So what was the last time that you were able to do things like gymnastics, and can you give us a snapshot of what your life looked like in that last year before POTS came on?

Arianna: Yeah. So, I want to say that I actually started having symptoms back in 2017, although I did not have the big, catastrophic onset of major symptoms until 2019. So, I had originally kind of stopped doing gymnastics because of a different hip injury that I had around 2015, but I was still a really active person.

I was going to the gym every day and I decided that I wanted to be a runner. So, I was running, I think, 7 to 10 miles a couple times a week and was really taking physical health serious. And [00:04:00] then I went to college and I, you know, started having quote unquote panic attacks. And as far as I'm concerned, I wasn't an incredibly anxious individual, although I was only 17.

And I was coming across the country by myself. I did not know a single person in Arizona. And so, you know, I kind of just had the thought, maybe this was too much. Like, you know, I mean, mental health works the way it does. I was like, maybe this was just too much for me. So I ended up coming back home.

And I did my first year of college online with ASU. And in that year, everything was still fine. I mean, I really did not have any other symptoms besides these weird panic attacks that I would have sometimes. I was still able to go to the gym quite frequently. I went to music festivals where I was outside in the heat.

I was running around. I could stay up late. I could eat whatever I want. I, I had virtually no symptoms. And then I [00:05:00] remember when I went back to school in the fall of 2018 I started to just feel some minor things. Like I would get fatigued walking to class. I mean ASU is a humongous campus and I had about a 20 minute walk to all my classes.

So I remember that became increasingly difficult. And then there was, there's a mountain that's right across the street from my apartment complex, and it's called A Mountain Common Hike that, you know, kids do all the time to look at the campus, and it's really pretty. And I remember calling my mom, because I had decided on a spring day in the beginning of 2019. I had decided I was gonna take a hike and I remember calling my mom and I told her I was like, Mom, like, I can't breathe. Like, I know, like, I remember starting to feel like maybe I was just out of shape. Like, I was like, I gotta get back into exercising.

This is ridiculous. And I just felt like I couldn't breathe and I felt really, really tired. And, you know, my mom's [00:06:00] listening to me talk and she's like, huh, well, that's strange. And I just developed this exercise intolerance, basically, where I just really could not do anything, and then that started me you know, kind of not going to classes, because I just couldn't walk there, I couldn't do it, and I think there was just a big piece of me that at age 18, 19, I, why would I think that something was physically wrong with me?

I just did not, I was incredibly healthy my whole life, so I did not pay attention to that at all. I was like, we're just gonna ignore, we're gonna deny, I'm just out of shape, like something's just wrong. So I kind of, had an an interesting last year where I just thought that I was having these panic attacks.

Jill Brook: So for all the people out there who feel like they have maybe had similar things go on, but they're asking themselves, what exactly does a panic attack feel like? Do you mind sharing what yours felt like?

Arianna: Yeah. [00:07:00] So, mine would come out of nowhere and it would be zero to a hundred in two seconds. And when I say two seconds, I mean literally two seconds. It would be like I am just sitting there and I have always described it as I feel like this rush. I feel like this wave coming over me that it's like I only have a split second to prepare because something's going on and then it would be my heart rate would skyrocket and it would just be beating out of my chest and I would sometimes feel a little dizziness but it just literally felt like my body was going immediately into fight or flight and I would always feel like I got you know from gymnastics I know what adrenaline feels like and I would just feel like I got this massive push of adrenaline where I would be shaking from head to toe.

Sometimes I would sweat a little bit, but it was mainly just this heart rate reaction that I would just, it would just be going crazy. And it, it scared the living crap out of me. Like I remember being in my dorm room and having that for the first [00:08:00] time and I was just like, oh my gosh, like, what is, what is happening to me?

It was absolutely terrifying.

Jill Brook: When you were in the state of assuming that you were just out of shape or something like that, how long did that last and what was that like? How long did you try to just push through?

Arianna: Yeah, so, I, like I said, I'm a little stubborn and I'm a little determined. So, you know, I felt like there was this whole thing with being in college and I've always been an incredibly independent person. So when I made the decision that I was going off to ASU, across the country, and I had to come home, that was really hard for me, mentally.

And so then I was like, okay, we're gonna be determined, we're gonna try again. So I went back in the fall, and I think that contributed to that kind of just inability to recognize that anything was going on, but more or less, I was still okay, I was still fine. It was May of 2019 that I woke up in the morning and I thought I was having a heart attack.

I, I had never, I still to this day, I don't [00:09:00] think, I mean, I shouldn't say that I don't experience anything like that, but I really don't think that there was more of, like, a catastrophic POTS moment than that morning. It took me completely by surprise, and it didn't even really feel like a panic attack. It felt like something else, and I don't know what that was.

I don't know if it was an arrhythmia, but I just remember I almost went into a state of shock, and I just, like, sat down on my couch, curled up in my blanket, and just kind of put I think I put on Disney Channel. Like, I was like, I need something, like, comforting. I'm all alone. And I remember calling my parents.

I probably called each of them, like, 20 times, and they were in meetings. And, I mean, I I don't know when to call 911. Like, I was just, like, a baby. I was only 19, so I had no idea what was going on. And the next day, I booked a flight home, and I came home, and I was just like, it scared me that much. I was like, I gotta reset, [00:10:00] and every single morning, from there on out, I would wake up with my heart rate skyrocketing, for absolutely no reason.

Jill Brook: That one day was a new day and then it just kept happening.

Arianna: Yeah, and since I woke up that morning, my life has never been the same. It was, that was like, the catalystic POTS moment where it was like, life before, now we have life after.

Jill Brook: And there's no trigger you can think of that happened at that time?

Arianna: We have thought of quite literally everything that was possible. I, I I mean, I was at the Mayo Clinic and they couldn't find any reason as to why my body decided that that day we were going to do that. But that has been my staple symptom that I have pretty much carried for the last four years is waking up in the morning and I have symptoms.

And most of the time it's my heart rate, going crazy.

Jill Brook: Wow. And you know, you said something a [00:11:00] minute ago that resonated with me, and I'm guessing a lot of our listeners will resonate as well, which is that terrible, terrible feeling when you're wondering if you should call 9 1 1, or go to the ER, and that is the worst, because you don't know how bad it is, and if they're even gonna be able to help you, or if they might make it worse, or...

Arianna: Yeah, so for that time frame, I, I, I was so determined, I went back to school. I was like, I, you know what, it's fine. So I went to you know, a couple doctors and I got I diagnosed with inappropriate sinus tachycardia after I convinced them that I wasn't having panic attacks, which, you know, of course, took five ER trips, two different cardiologists, so that finally I went to an electrical pathway cardiologist that you know, was like, okay, well, this is clearly not panic.

It's not mental health. Inappropriate sinus tachycardia. That's what we're gonna slap on it because I have no idea what this is. And I was like, [00:12:00] Okay, well, I have had my, because I thought it was cardiac. I didn't have any other symptoms besides my heart. So I was like, okay, well, you know, we did the echo, we did the monitors, we did the ultrasound, we've, we've done everything that we've looked at and my heart's fine.

So I'm like, if my heart is fine, I'm not going to try to let this rule my life. So I, you know, went back to school and was coping the best way that I could and that ended up being that every single time I had an episode, I would go drive myself with my heart rate being, you know, 175 beats per minute.

I would get in my little car, and I would drive myself to the ER, even if it was 2 o'clock in the morning, and I would sit in the parking lot, and I would wait until it was done, and if I felt like it was getting worse, or something, then I would go in. But that became and I would have my mom on the phone with me in, in the parking lot, and it became a routine. I mean, it was like clockwork. My mom knew to keep her phone by her because [00:13:00] at any time of the day, I was gonna call, and it was gonna be like, Mom, I'm having an episode, and she'd be like, Alright, well, let's get our purse together, let's get our keys, and you know, let's, let's head to the ER, and we just hope and pray that something doesn't happen to me driving on the way there, because you can't, you can't call an ambulance twice a week to take you, and there were a couple times where it ended up being something, you know, that was serious, that was like, if you didn't come in, this would have been really problematic, and it felt exactly the same as all of the other ones that ended up being perfectly fine, so it's always this, it, that has been a really hard struggle for me, is just the mental tax of having to, to a certain level, be in tune with yourself, and, and trust yourself, and listen to yourself. And then also be able to, a certain extent, ignore that, because if you are paying attention to it too much, you will, you will freak out, you will panic at the sensations that you are [00:14:00] feeling. And you can't do that if you're going to have any mental stability left being this chronically ill.

So it, I've always found it really hard to balance those two together.

Jill Brook: Wow, that is so wise, can you just talk more about that? Like, do you have a personal policy? Like, I know for myself, it's more with, like, mast cell symptoms, and in order to try to get myself to not be hypervigilant, I kind of have this rule of thumb where I say, well If I can get interested in something and forget about it for 20 minutes, I try that.

So if I can get into a book or get into some work and forget about it, then the symptom must not be that bad. If the symptom keeps bugging me no matter what I try to do and says, hey, pay attention, then that's my little rule of thumb to say, okay.

Arianna: I like that.

Jill Brook: But, with yours, well, like, do you have anything, like, how, how, what is your, what is your rule of thumb for [00:15:00] deciding, knowing that it could be something actually kind of bad?

Arianna: Yeah. So I think for me, a huge component of my healing has been kind of more holistic things. I did biofeedback and I worked with a biofeedback practitioner, so, we worked a lot on breathwork and breathing. And so I actually learned how to synchronize my heart rate with my breath. So, I actually am able to have more control over my heart rate with my breathing, and I'm able to, within a couple minutes, put my nervous system out of fight or flight.

So that became a really useful tool for me, that it was like, you know, my symptoms typically aren't long lived, it's like I have this blast of whatever it's gonna be, or it's something that's less severe that carries on for a couple hours. So if it's something that carries on for a couple hours and it's hanging in there, if it's not getting worse, I know I'm usually okay.

I'm like, if it starts to get worse, [00:16:00] that's when you get to worry about it. But if I get one of these blasts that like, immediately kind of puts you into fight or flight, that it's like, oh my gosh, like what the heck is going on? I do my breath work. I do my meditation. I always, I got really, really lucky that I have incredibly supportive parents.

And so I really lean on them and I kind of, you know, will call my dad and I kind of explain to him, I'm like, what is this weird things going on? And he is the most cool, calm and collected guy. I, I don't know how he doesn't panic at things, but he just doesn't. So, we'll kind of, I, I really take on kind of like a doctor's role.

I think I've, I'm so educated now that I go through, like, a differential diagnosis. I take my blood pressure, I take my oxygen, I do a little EKG that I have, and I'm like, okay, well, if my vitals are stable, I will literally go through a process of talking the [00:17:00] self down, where it's like, okay, we did breath work, we're out of fight or flight. We've gone through the differential diagnosis of, you know, something can't terribly be going wrong with you because a vital sign would be messed up and all of your vital signs are okay. And so I, I usually, and if, and if it doesn't go away with, you know, like in an hour, that's when I start to be you know, okay, so this could be something that we need to pay attention to because I don't think I've ever had anything last longer than an hour that was, you know, very serious.

Jill Brook: So how much help have you had from, like, POTS specialists or anything in controlling this? Has it been largely you figuring out strategies like this, or once you had a POTS diagnosis, did you get anything that helped very much?

Arianna: No, no. I mean, that's, that's the bottom line. I mean, they really are, I don't have a lot of symptoms that I think they really have anything to offer. I [00:18:00] mean, I feel like I'm really this unique patient where it's mainly cardiac and there's nothing wrong with the heart. So when there's nothing wrong with the heart, it's the brain, and you know how everyone is so confused with the brain, it's just, they don't know what to do with it, so of course, you know, I was at the Mayo Clinic too, so I got really, really lucky that I was living in Arizona at the time, and got to be in a really good healthcare system, and they were the only ones who took one look at me and were like, I know what this is.

This is POTS. Let's put you on a tilt table. And sure enough, tilt table was like, oh, okay, perfect. So then I went through all of the other testing to make sure that it wasn't something that we were missing. We did the adrenals. We did the EDS test. We did the mast cell. We did the, you know, everything. And I was, I was perfectly healthy.

So they're like, okay, this is, this is interesting. Okay, so, obviously it can't be that bad if all you have is POTS. And at the time I was still walking, I was still, you know, doing, doing kind of normal life. I was still living on my own, so it didn't seem that bad at the [00:19:00] time. And you know, I did the lifestyle changes.

I was drinking, you know, 100 ounces of water a day. I'm trying to eat as many pickles as I can possibly tolerate. I'm you know, trying to exercise as much as I could. They refused to give me a handicap pass because they wanted me to walk more. So I was like, okay, I'm walking. And you know, I did all of the lifestyle things, and it just continued to get worse and worse, and so I wasn't even offered a medication until they finally prescribed me propanolol, which is a beta blocker in, I want to say it was about a year after I got my diagnosis.

That was finally when I was given propanolol, and I I was terrified of taking medications due to the fact that before I went to the Mayo Clinic I, I went to 7 cardiologists in 7 different healthcare systems before the Mayo Clinic, which none of them knew what POTS was. 7 of them. [00:20:00] Not a single one knew what POTS was.

So, without even really knowing what I was having they were prescribing me these, like, very scary cardiac drugs. I mean, it was like one I took to CVS to go get it picked up and the pharmacist looked at me and she was like, I'm not really supposed to do this, but why are you on this medication?

And I was like you know, for my tachycardia, they're trying to figure out what it is, and she was like, if you're going to take this, I want you to take it here, like in the parking lot, and then I want you to call me if you're okay, because this is like a new experimental drug. It's for, like, heart failure, and congestive heart failure.

You're not in heart failure. Like, this is a really scary drug, and you can't stop taking it once you take it, because it's gonna stop your heart. It could stop your heart anyways. She's like, I, you know, I, I really recommend you not take this. So.

Jill Brook: Wow.

Arianna: I [00:21:00] had a couple of those, actually, you know, so I kind of got the sense where I was like, are they just throwing drugs my way to kind of, you know, that they don't really know what it is?

And I just did not feel comfortable with not knowing what I even had and then trying to treat it. So I, I skipped out on the beta blocker for quite a long time and tried to do some other holistic things of you know, working with different practitioners, like biofeedback and all of that kind of stuff.

Jill Brook: Wow. Wow. So, you're in a wheelchair currently, and you're living with your parents.

Arianna: Yeah.

Jill Brook: Can you talk more about you said, you said really your only symptom is cardiac. So can you talk to us about your day to day? What limitations do you have? What can you still do perfectly normally.

Arianna: So, I wasn't in a wheelchair [00:22:00] until, you know, again, that's determination. I was like I don't need a mobility aid. I'm fine. I can do it. So, I want to say summer of 2021 was really when it started to get bad. You know, I couldn't make it up a flight of stairs in my own condo. You know, I was, I was scooting on my butt up and down the stairs.

It was, you know, pretty bad. I couldn't walk through a whole entire store by myself. But I, I held on until summer of 2022. So, last summer, I just, it got to a point where actually I was completely bed bound, like, I mean, I could not sit up in bed. So I, I think a lot of POTS patients will talk about being bed bound and, or just people in general with a lot of different illnesses, and I'm not exactly sure what their definition of bed bound is but to be perfectly candid, my version was I could not get up to go to the doctor.

Like, I could not go to the bathroom by myself. [00:23:00] I could not shower. I could not do anything. I was in my bed for three months. I think it was about three or four months straight. So that was, that was my definition. So, you know, parents waiting on me hand and foot, bringing me all kinds of, you know, anything that I could need in bed.

And it really felt like my life was over at that point. And I mean, it just, because there was nothing that anyone could offer me. And so I got to that point because anytime I moved, my heart rate was going I was having episodes where my heart rate was going over 200 beats per minute, and it was always sinus rhythm, and that's what no one could figure out.

They were like, okay, this, this makes absolutely no sense, but I was too sick, and I was just, I got in this state of just being so terrified of everything that I was terrified to even go to the doctor. I was like, I just, I can't imagine what they're gonna have to say, because I, I, pretty sure I thought I was, like, actively dying.

So, that's when the wheelchair came into play. [00:24:00] Once I was a little bit able to kind of at least sit up in bed, swing my feet off the bed. You know, I never thought that at 23 I would be ordering myself a wheelchair from Amazon. It really was not on my bucket list of things to do at 23. Yeah. And, and so I finally I got that and was able to kind of become a little bit more mobile, and you know, we got a ramp to go out in and out of the house, so things have improved for me since then by a lot, but that wasn't due to any practitioner, I kind of did that on my own with a lot of different things, and so now, thankfully, I'm not as bed bound so I can, I'm working on basically relearning how to walk I am now on a beta blocker.

I'm on metoprolol. And so that has helped a little bit of keeping my heart rate under control, but I really think biofeedback [00:25:00] did most of that for me. And so I would say that I can stand up for about two minutes right now without my heart rate going above 100. So that doesn't mean that I can't stand up with my heart rate above 100, but in order to pass a tilt table, your heart rate needs to be under 100 to be like, oh, your POTS free.

You don't have, you know, symptoms. You're not symptomatic. So, I would say that in terms of like fatigue and muscle wasting and pain level, I can stand up for probably about 4-5 minutes on a good day, at a time. So, you know, I have a shower chair. I sit down to take my shower. I have a little stool that I put in front of my vanity in my bathroom. I sit on the floor to do my makeup. I just kind of rearranged my room now that I'm more mobile so I can move the wheelchair easily around my room.

So I've gotten to the point now where getting in and out of the house is a lot easier because I don't need the ramp. I can stand up and I can walk from inside the [00:26:00] house to the car. But you know, if I'm gonna go anywhere I have to be with someone. I'm still really scared to drive in general just because if I do have an episode while I'm driving I just I would feel terrible if I ever injured someone else.

So I've never had my license taken away. I still have it, but it just scares me. So I stay away from driving and, you know, I need someone to assist me anyways with the wheelchair, so I can't really go anywhere by myself. So I think that was the hardest part was just losing the level of independence after being the same kid who decided at 17 to go across the country and go to school.

Jill Brook: Yeah. Okay. I have a couple of questions queued up, but the first one is. Maybe a little quick. With only four or five minutes of standing , that must feel like a very precious resource to you. How do you decide to spend it?

Arianna: Oh, that's interesting. Actually, this is a good one. My dad, the first time that I could stand up long enough to [00:27:00] give my dad a standing up hug, he just like, broke down, in tears, because it was just like, I haven't been able to give my kid a hug in over a year, so, a lot of hugs, standing up. Honestly, I use it a lot for my social media, that was like, kind of my main coping mechanism that I used, I mean, I lost every single friend that I had as soon as I became ill.

Cause I mean, you know, you meet college friends that don't really care too much about you. They're more so school friends, going out friends. So, and then you put, you put COVID in the mix. And I pretty much lost every single friend that I had, so I was completely by myself, alone, and I really needed some form of connections, and social media became that for me, I started the account, like, right when I was bedbound, and kind of faked it till I made it, no one really knew that I was in a wheelchair, or that I was bedbound, or that I was sick, and I now kind of use my couple [00:28:00] minutes at a time to do that or to go outside and at least just to be able to walk a little bit in the sunshine is, is really, really nice.

Jill Brook: Wow, you just sound so strong. That was actually my next question, was, you sound so upbeat and mentally healthy and confident now, but you talked about that moment where you had lost everything, you couldn't even get out of bed to go to the bathroom, and so how smart to find something that you could do.

And make it work, and now I think you said you have like 200, 000 followers after just one year. That's amazing! Are you so proud of yourself?

Arianna: I am. I think that's something that I didn't really fully kind of grasp it I think until I hit like 200, 000 and then it's just I I really got so lucky that I built just I somehow, I don't know how I did it, I think just maybe the universe was giving me a [00:29:00] help out, I don't know. But all of the people that I get coming across my social media, whether they follow me or not, are always just so kind.

I really, I never really get hate comments, I just get you know, this outpouring of love from people, and I, I'm so grateful that that's what my page gets to be about. And so as I've kind of opened up about POTS a little bit, there's a lot of my followers who do have POTS and, you know, have kind of looked to me for, you know, what are things that have helped you?

You know, how do you feel? Are you doing better? And so I get people that check in on me and that's really, really sweet.

Jill Brook: Wow, that's amazing. So, I always like to ask, as somebody who's kind of made it through the darkest days, it sounds like, what would you say to somebody who right now, in this moment, as they're listening, is going through their darkest days? And their life [00:30:00] feels like it's falling apart, and they're losing abilities to do things and, you know, basically what would you say to that form of yourself that first had to come home and lay in bed?

Arianna: I, I think honestly, I would give myself the advice of pushing yourself to a point of exhaustion will feel so much worse when you are stuck in the bed or when you are down so bad that now you basically can't function, then you ever would have felt if you would have just missed that one thing. If you would have just given yourself the ability to rest and said, no, I can't do this and not pushed yourself.

Because then you have this level of this level of like guilt that in a way you did do it to yourself because if you would have just rested, if you would have tried to maybe pay [00:31:00] attention and listen to your body telling you I can't do this right now. You probably would have saved, I mean, we know how the nervous system works.

If it gets overloaded, you got to come back from that. It can't just jump back in a day. So I think I really wish that I would have paid more attention to what my body was telling me and not thinking that I could have just pushed through this and for everyone who is kind of, they feel like they're heading down that road, I really would love them to try to listen to their body in whatever, in whatever way it's speaking to them and really try to take care of their mental health because that is so in tune with the nervous system. I mean, I think really like the main thing that pulled me out of that was journaling, gratitude, meditation and biofeedback.

When I learned how to meditate, I know that we hear it all of the time that meditation helps so much [00:32:00] and it's something that we should all be doing, but specifically for people who have, like, dysautonomia issues. It just, it is a total game changer in the way that you cope with your illness, and then on top of that, I think it gives you benefits of just feeling better in general.

Like, I'm to the point now where If I do have an episode of, you know, my heart rate skyrocketing with breath work and meditation, I can kind of make my symptoms go away in about 10 minutes. So, I think it's a really, really helpful tool to use.

Jill Brook: Yeah, that's amazing. So are you up for doing a speed round where we ask you to just say the first thing that comes to your mind?

Arianna: Sure. Absolutely.

Jill Brook: What is your favorite time of the day and why?

Arianna: After I've had my morning episode, before I eat lunch, because I get symptoms after I eat. So, if it's in the part of the day before I eat, I feel great for those [00:33:00] couple hours.

Jill Brook: Awesome! Where is your favorite place to spend time and why?

Arianna: Somewhere in New Mexico, in front of a mountain, because at least if I can't climb the mountain, I would like to look at it, and it's usually temperate enough that it's not too hot outside.

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

Arianna: Two, that's it.

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

Arianna: Excruciating.

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

Arianna: One percent better every day.

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

Arianna: Paint by numbers. Paint by numbers have become my sick hobby, that I can sit there for hours and do my paint by number and it's like 15 bucks off Amazon and it's, it's wonderful.

Jill Brook: Nice! [00:34:00] Who is someone that you admire?

Arianna: My dad.

Jill Brook: Do you want to say why?

Arianna: Yeah, my dad, he's, he's the perfect combination of, like I, I think I mentioned before, just sturdy as a rock. He, pretty much nothing shakes him. He is ridiculously resilient, and I have watched him in the last two years, just really take on probably more than any parent should ever have to do between working his very, very demanding job, he runs an organization, and then on top of that being a full time caretaker to a kid.

And I came with three cats back in the house, so he has three cats, two dogs, and my mom to take care of, and not once do you hear him complain. He is always just there in whatever way you need him, and [00:35:00] I admire him so much for being able to do that as a person.

Jill Brook: Aw, yay, Dad! Okay, back to some quick answers. What is your favorite food?

Arianna: This is gonna sound strange. There is a green chili dip in New Mexico that you can only buy in New Mexico. That is my favorite food.

Jill Brook: All right. What is something you're proud of?

Arianna: I'm proud of how much work I have done on my own to get myself out of the worst days of my POTS.

Jill Brook: What is the toughest thing about POTS?

Arianna: Grieving the life that you had beforehand. I think I was old enough that I got it, you know, not as an adolescent. I got it more so as a college student and grieving the whole experience of college and, you know, that exact plan that I had, that I was perfectly on track for, that I worked all of my adolescent hood, [00:36:00] for having to grieve that part of it and realize that it's gonna look different.

Jill Brook: Yeah. What helps you fall asleep?

Arianna: Noise canceling headphones with a sleep story from the Calm app playing or a sleep meditation. And I'm not a sleeping in the dark person, so I have red light that I put out, cause blue light's bad for your sleep, but red light, great.

Jill Brook: What gives you energy when you need it?

Arianna: Being surrounded by people who are safe people for my illness that are understanding of this is what it looks like, this is what you might need. However, we're doing this together, and you don't just have to sit in your house. I will be there for you. Those, those people really help me.

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

Arianna: Oh, two things. The Element Electrolyte Packets, [00:37:00] because they have no added sugar, it's like strictly like three ingredients of like magnesium, potassium, sodium. They're delicious, it's wonderful. And then also, the little cardia, EKG, things, those are so helpful. It finds like, the six most common arrhythmias.

So, when you're having that high heart rate, I really think it's so helpful that you can determine. Am I having an arrhythmia, you know, to a certain extent and tracking heart rate and you can send it directly to your doctor and they will accept that as like a real EKG and it's so much more accurate and thorough than Apple Watches.

Jill Brook: What is something you're grateful for?

Arianna: I am grateful for my girlfriend and the relationship that she's been able to give me. She also has POTS. I actually diagnosed her POTS for her when we first met. So I'm really grateful that I get to be in that relationship, that we are so [00:38:00] understanding of each other and see each other, and it's, it's really fulfilling to be. Yeah.

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

Arianna: Oh. Countless. Target. Hospital Waiting Room. A frat party. I laid down on the countertop of a frat party. Yeah in the middle of some person's yard, on a walk, the gym, I mean, the, the list goes on. One thing about, I'm gonna lay down. If I have to lay down, I'm gonna lay down regardless of where it is.

Jill Brook: I can relate. Okay, I just have one more question. What do you wish more people knew about POTS?

Arianna: I, I think the main thing, because I'm such a unique patient, that I don't have a lot of the typical representation that we typically see with POTS, is that I wish more people understood that it doesn't come all the time with passing out. It doesn't come all the time with [00:39:00] dizziness. It's, you know, for me, I always get told you know, be glad that you don't look sick.

And at the same time, I'm looking at the muscles just absolutely wasting on my legs and just being just like skin and bones now from being in, in a wheelchair. And a lot of people don't even have that. I mean, it's, it's completely invisible. So I just wish that more people understood that the grocery list of POTS symptoms is so long and can present so differently.

And so many different people and that we should really try to be as kind as we can to every single person that we see because it's so invisible. You have absolutely no idea what is going on with someone.

Jill Brook: Oh, beautiful. Well, Arianna, thank you so much for sharing your story and your insights with us. And we just so appreciate it. And I know that everybody listening is [00:40:00] wishing you all the best going forward.

Arianna: Yeah, thank you so much for having me. It was so, so awesome to be able to have this opportunity and have the platform that I do to be able to spread some awareness.

Jill Brook: Well, we're excited to have our platform meet your platform. So hello out there, everybody in Arianna's world. So, hey listeners, we hope you enjoyed today's conversation. We'll be back again next week, but until then, thank you for listening. Remember you're not alone and please join us again soon.