Episode Transcript
Jill Brook: [00:00:00] 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 Antonia. Antonia, thank you so much for joining us today.
Antonia: Thanks for having me, I'm really excited to be here.
Jill Brook: Well, we are really excited to get to know you. So maybe you can start with just like the basics to give us a little bit of context of where are you, what should we be envisioning?
Antonia: Sure. So, I'm 39. I live in Northern Virginia, right outside of Washington, D. C. I'm married to a wonderful man named Scott, and I have a stepson named Chris. He's 14. And then I also have a fur baby my little doggie, Leia, who's a great companion for, you know, people with POTS and especially me. I'm a video TV producer.
I've been doing that for just a little more than 15 years, so quite some time in the area. I've worked for, you know, National Geographic, Discovery, Warner Brothers Discovery, and most recently I'm [00:01:00] doing a show for A& E.
Jill Brook: Oh, exciting. So tell us more about being a producer. What's the mindset of a producer?
Antonia: Sure. So, you know, being a producer, you have to be very detail oriented. I'm usually the one who's doing all of the planning for the shoots. So, that's, you know, everything involved before the shoot starts. So, like, any kind of you know, like, brainstorming about the project, figuring out what kind of project it needs to be, like, what kind of video it needs to be and then once you do that, any kind of scripting, and then sometimes I'm on set you know, for my job, so, you know, being there to make sure the shoot's going smoothly.
Sometimes I do interviewing as well. I've been doing that for quite some time, so it's kind of funny to be on the other side of that. And then I also oversee the post production. So, you know, I really like to see my projects through from beginning to end. That's really how, you know, I work. And I've done everything from like short form videos, like documentary [00:02:00] style, to like marketing videos, internal communications, promos.
And then, you know, most recently the TV shows that I've been working on. And yeah, I'm really excited to get into that space. I've been trying to do that for some time now, to get into a long form, we call it. So, yeah, super exciting. My show is starting to air June 15th.
Jill Brook: Ooh, we could link to that! What show is it?
Antonia: It's called Find My Country House. It's going to be on A& E and FYI Networks. And it's like a traditional house hunting show, but with a country twist.
Jill Brook: Ooh, very exciting. Wow. Congratulations.
Antonia: Thank you.
Jill Brook: Okay. So what else should we know about you? What do you like to do when you are not working so hard on your TV shows?
Antonia: You know, I, I love to hang out with family and friends. I'm really a quite social person. You know, my husband and I are big like film, TV buffs. So like we watch a lot of movies watch a lot of TV shows. I'm kind of a true crime junkie [00:03:00] also. Love to travel as much as I can with POTS, you know, go to the beach.
I'm a huge musical fan. I try to get to the theater as much as possible. It's really, like, my favorite place to be I really feel like, you know, that's, that's, like, my, that's really my favorite place to be, honestly, is the theater. So, go there quite frequently, see a lot of Broadway shows if I can yeah, and,
you know, I think before POTS, like, I was a lot more active, you know, I, I used to do, like, hot yoga classes and lots of walks and hikes and spin, you know, so that's kind of tapered off, but I'm trying to get back into it a little bit, like, I still spin just, you know, in shorter amounts of time and still do yoga in shorter amounts of time, so I enjoy all that as well.
Jill Brook: So what's your favorite musical of all time?
If you, you know, could, you'd see it again for the first time. Erase your memory and get to experience it anew.
Antonia: I would say Hadestown. Are you [00:04:00] familiar?
Jill Brook: No.
Antonia: Okay, so yeah, it's, it was a really life changing experience for me to first see it. It was the first show I saw after COVID lockdown, so it had been like a year and a half since I'd seen a show and it was just so moving and so beautiful and just like being in the audience and hearing the crowd and, you know, the sounds of the people and being in, you know, with people again for the first time in so long.
It was just such a moving experience. Like, I actually cried when I first heard the the audience. clapping and like interacting with the show because it had just been so long, you know, and I think everyone missed that interaction and that like longing for being with other people during that time. But beyond that, the music is just so incredible and the story is so beautiful.
So, I've seen it four times and I
would totally go again if I could, so.
Jill Brook: Right [00:05:00] on. So you had alluded to a time before POTS, and I'm wondering if you can give us a snapshot of your life and what it was like maybe in the six months or the year leading up to the time when POTS entered your life.
Antonia: So, I wouldn't say that I was an athlete, but I would say I was probably in the best shape of my life. I was doing 60 minute spin classes, 75 minute hot yoga classes. I was playing four hours of softball a week where I was standing and, you know, at second base where I played. That's actually where I met my husband playing softball.
And, you know, I would say I was a very active person. I took the metro to work, so I would have to walk long distances, and I didn't have any problem with it. You know, it was, I guess I would just say I was like a normal active person. And, about, so about six months before I had POTS, we were in the midst of the COVID pandemic and lockdown and you know, I was fine.
I was doing fine. And [00:06:00] this all started for me March 2021, where I got my first COVID vaccine. And ten days after my first COVID vaccine, I started having POTS symptoms. And of course I didn't know what they were and it was really scary. I was actually on my bike I was spinning in the basement in my workout room, and I started to feel super lightheaded, super fatigued.
Just wrong, like it, you know, I never felt like that before and I was doing a really easy ride, like it was not hard. And on any other day it would be so easy for me to do that, but for some reason I was getting like spots in my eyes, I was weak I was like really overheated, feeling super sick so I had to stop and we ended up going to urgent care that night and of course they found nothing wrong with me.
And they recommended that I go to see a cardiologist just to see what was up. So, I ended up doing that.
So my primary care, she's like, [00:07:00] I don't know what's up with you, you know, go see, let's go see a cardiologist. So I went to a cardiologist and after several tests, they diagnosed me with vasovagal syncope and told me to just increase my salt and decrease the you know, the exercise like intensity.
And it just didn't sound right to me. You know, like I left the office just feeling like so unsatisfied and like this is not helpful. I can't even walk up the stairs without feeling like my heart's exploding. Like, I don't think adding a little salt to my diet is gonna help me. You know, it was kind of ridiculous, honestly.
So I found another doctor. Another cardiologist who had really good reviews online and he said he was the first person to say to me, it sounds like you have some kind of autonomic dysfunction going on. And I was like, what's that? You know, I had no idea what he meant. And so I, I looked [00:08:00] it up myself and I found, you know, POTS and I'm like, this sounds just like me, you know, like I went from this very active person,
didn't have any issues with standing and walking and extreme, you know, exercise, to not being able to cook, to not being able to do the laundry, to not being able to walk up the stairs, you know, to not being able to do like even a five minute walk up the street and back without, you know, these extreme symptoms.
I mean, I was getting so fatigued. I was getting slurred speech. I couldn't move. Like I had to just lay down and drink water and eat salty snacks, like until I was feeling better and it could be hours. And it was really scary at first. Like I was very afraid and we went to the emergency room several times with, you know, no results.
Also super frustrating when you feel [00:09:00] like you're dying and like people just say to you, oh you're fine, you know, we're gonna send you home after some fluids, like, oh all your tests check out, you're fine. It's like, no, I am not fine. There's something very wrong here. So after the second cardiologist did a bunch of tests, he, he had me do a stress test and he found that my heart rate went up to like 160, or no, 170 something, and my blood pressure tanked.
And he's like, okay, I think you have this autonomic dysfunction. I'm going to send you to a specialist. So I'm like, all right, I'm getting somewhere, you know, I feel like maybe I'm getting to the right person now. I think this was like July by then.
Jill Brook: Okay.
Antonia: So I was dealing with these really bad symptoms for, you know, from March to July.
And finally I landed somewhere in Northern Virginia at a pretty reputable place and did, you know, the gamut of tests. And I was finally [00:10:00] diagnosed with POTS in September, 2021. And I can tell you that I just like cried, I just cried when I found out what it was. I was so relieved and also so devastated at the same time.
It's a really weird feeling, you know, because you want to know what's wrong with you, but then realizing that you have all this stuff wrong with your body now, when you were a perfectly healthy person before, it's really hard to accept.
Jill Brook: Yeah.
Antonia: And I still feel that way. Like, I think there's a lot of grief involved with this
disease, with the syndrome I should say you know, because I'm just so, I feel like I'm a shell of myself of what I used to be in terms of like my activity, you know, and so that, that's hard to deal with still, you know, three years into having this.
Jill Brook: Yeah, and the, the job that you love, it sounds like, is really demanding. You've kind of got [00:11:00] to be everywhere, you've got to be mentally super sharp, you have to travel, and so I'm guessing that that has, you know, taken a toll?
Antonia: Oh, absolutely. And I have to say that the silver lining with the pandemic for me is that I've been able to work remotely most of the time, you know, for, for the last three years or so. And just going on shoots occasionally has been, you know, a lot better for me. And then, you know, I'm just really honest with people when I'm on shoots.
Like my bosses, they all have known and have been very supportive. You know, luckily I didn't have any of that pushback about about my illness. Like, oh, you look fine, but you have this illness. Like, people have been very understanding and supportive, and I'm so thankful for that, and especially at work.
So, like, whenever I'm on a shoot, I always tell them, like, hey, I need a chair. I have to sit down during this. Like, I can't stand, you know, for long periods of time. So, I always make sure that that's available to me. If they don't have a [00:12:00] chair, I bring a stool. I have a collapsible stool that I bring. And I set it up and it's like a conversation piece of people sometimes.
Jill Brook: Yeah.
Antonia: But you know, it works. It works for me. I have to do what works for me. So like, you know, I wear compression socks and I hydrate like crazy. And, you know, when I take the train, I, I use, and the airport when I fly, I, I use a wheelchair and, you know, that was really hard for me to accept, honestly.
Like, I can't believe that I need a wheelchair to go through the airport or to go through the train station. But when I don't use it, I'm miserable. And so I just tell myself, you know what, this is just my reality. I'm just gonna deal with it, and I'm gonna be comfortable, and I'm gonna feel good, you know?
So, yeah, most of my work recently has been remote, like in the last year. So I haven't been on a ton of shoots, and that's been better, you know, for me, because I work from home, I have a [00:13:00] great office, if I need to rest, I go sit on the couch for a little while. So yeah, that's how things are now.
Jill Brook: That's great. You had mentioned that you're just really open and honest with everyone and, and that sounds great. And feel free to tell me if you don't want to go here, but I do have a question about that because it sounds like your trigger might have been a COVID vaccine. And just from doing this podcast, I've talked to a lot of people who say, don't ask me about my trigger.
It was the COVID vaccine, but I don't want to talk about it. My family doesn't like it when I talk about it. People are mean to me when I talk about it. It brings nothing good. And so I'm self censoring. And so, have you encountered any of that? Did you consciously decide to be open about it? Is it a sticky point in your life at all?
Antonia: So, I just want to say that I am not an anti vaxxer. I get a [00:14:00] flu shot every year. I got four, five COVID vaccines. So, you know, my husband is chronically ill and we were really concerned about him during COVID. And so I was first in line to get the vaccine because I wanted to protect him. And so I wouldn't take that back.
Like I, I think that it's very important to be vaccinated, especially when so many people were dying. And, you know, I think it's just super unfortunate what happened to me. And I'm not afraid to talk about it. I think that people need to know that this vaccine injury has happened to a lot of people. And,
you know, as far as we can tell, the vaccine set off this inflammatory condition in my body, and it, so basically like, we think there's like an autoimmune component to my POTS because of the vaccine, and that the vaccine just caused this to happen in my body. However, I've had [00:15:00] symptoms for years, like I've had stomach problems my whole life, I have thyroid issues.
I've had really severe allergies my whole life. I've had also really low blood pressure, really low blood pressure my whole life. And I always remember doctors telling me like, hey, are you feeling all right? Like your blood pressure is super low. So I feel like I've always had these POTS symptoms, like kind of dormant in my body.
And then probably the vaccine is what brought it out in me and made me worse. So I do want people to know that that happened to me, and I think it's important that people know. But again, I just, I just want to reiterate that I'm, I'm definitely not an anti vaxxer, and I think it's super important that people got vaccinated during that time.
Jill Brook: Yeah. Yeah. No, I'm, I'm, I'm glad that you feel like you can talk about it. Cause obviously it never feels good to feel like you have to be keeping things quiet about what's happened to you. So what helps [00:16:00] you most with your symptoms?
Antonia: So I am highly medicated. I'm, I'm on like 16 medications, not just for POTS, but for all my other illnesses that I have like a dozen, you know, like everybody I think that has this illness, I have about a dozen diagnoses so that I'm treated for by several doctors. So, I take, I take Mestinon, which was like very helpful for me when I first started having POTS symptoms.
And then a few others, like I take Propranolol for my heart rate and then also Clonidine, which has, Clonidine has been like a lifesaver for me because it helps, you know, get rid of those adrenaline rushes and the sweating and those kinds of symptoms that we get. Just like the general jumpiness that, you know, most people have with POTS.
So I think finding that right, you know, cocktail of medications has really been helpful for me. Also just like lifestyle changes. Like, you know, I, I drink a [00:17:00] lot more water now. I take a lot more salt. You know, I'm very liberal with my salt in every meal, and then I also take salt supplements. And then I feel like a good balance of rest and activity, it's kind of hard for people to understand because I feel like you need to rest a lot, but you also need to move your body.
And I also have a Fibromyalgia diagnosis, so I get a lot of pain if I sit for too long. So I notice that I need to move even though it's challenging to do that. So I feel like you have to find that right balance
for you.
Jill Brook: Can you more about that? I don't know that much about Fibromyalgia, so please forgive any ignorance, but it's interesting to me that you mentioned that if you sit too long, that's when it sets in. I too have issues where I can't sit very long without getting uncomfortable. I've never connected anything.
I have no idea, you know, if it's a similar issue or not, but, but can I ask you to just [00:18:00] describe what that is like and like, how long can you sit still before you have to move and what kind of pain sets in if you don't, don't.
Antonia: So, Fibromyalgia is just like a general term for unexplained pain. Thank you. Like, you go to the rheumatologist, they test you for a million things. If they don't find anything, they're like, it's probably Fibromyalgia. It's not really a scientific diagnosis, which I have, like, had a hard time kind of accepting it, you know, and I've, and I've dug deeper with my doctors about like whether or not I do have this, but I can tell you that I do have pain.
And I have a lot of pain in my hips, my legs, my calves, my feet. If I sit for too long and get super stiff and I have to move and it feels really hard to move at first, like the stiffness is, is very painful. And sometimes if I sit too long, like, it's it gets like really bad, like really bad pain.
I get numbness [00:19:00] too in my legs and my hips. And I've had this weird unexplained calf pain for like years that no one's been able to figure out. It's really odd. It's just in my one calf, my right calf. And I, I would love to hear if anybody else has this problem. But it's like, super stiff and it feels really painful especially after like walking and standing for too long.
I think it might be related to blood pooling, but it's just so odd that it's in like one of my calves. But yeah, that's, that's where the most of the pain is for me is in my lower body. I take naltrexone actually for it and it's been really helpful, but some days it, it's bad and I, it doesn't help the naltrexone.
Jill Brook: Yeah. Interesting. I get lower body pain too, when I sit still, and I have no idea what's causing mine. I have no idea what's causing yours, but you might want to check out venous compressions or venous outflow obstructions, if you haven't already,
Antonia: Oh OK.
Jill Brook: And and see if there is something about blood [00:20:00] pooling made worse by, by another diagnosis that sometimes can get lopped onto those other dozen.
And you had spoken about. Something bad that happened to you that actually had a silver lining, and you feel like maybe now you're having some breakthroughs? Do you want to talk about that?
Antonia: Sure. So six months ago, me and 80 percent of my doctor's patients were discharged from the practice. I got a very cryptic email saying my appointment had been canceled and I couldn't reschedule for a year and they would continue to fill my medications until I found another doctor, but that was it.
There was no information and honestly I was devastated and I was freaking out because these were the doctors that had diagnosed me. These were the doctors that have been treating me for [00:21:00] over two years who I knew really well, who knew me really well. You know, and I, I felt just devastated that I would have to start over with somebody
Jill Brook: Did you find out why they dumped everybody?
Antonia: I've, so if you're in the Northern Virginia area, you probably know who I'm talking about, but when we would go to the doctor, it would be six, eight hours that we would wait to see the doctor. And it was crazy because they were so overwhelmed with patients. I think they just decided to get rid of a bunch of people because they couldn't keep up with the demand anymore.
And I heard that it was patients over 25 that they got rid of. And I was lumped into that category. So, but this is all just stuff that I found out like in my Facebook groups and, you know, with other people with POTS who were discussing, you know, what happened and it had happened to them as well.
So, that's all I know. I don't really know anything more than that. [00:22:00] And I was really, first I was super, super sad. And then I got really angry and I was like, you know, there are hardly any doctors that treat this illness. And it took me so long to find them. I was like, what am I going to do? So, luckily I'm pretty close to Johns Hopkins.
I'm about an hour, hour and 15 from them. So I called that that day and it took me like, you know, eight months to get in. But luckily I had my medication during that time. And so I saw, I saw a new doctor at Hopkins and I think she's awesome. I think she's really smart and really dedicated to helping me and helping her patients.
Just after seeing her one time, she came up with this idea. She's like, you know, since you started having these symptoms after your COVID vaccine, I feel like there's probably an autoimmune component to your POTS. And before I was just told I had [00:23:00] hypovolemic POTS. So, now that she's telling me there might be some autoimmune component, we did some blood work, we found that, like, all my inflammatory markers were very high. So, she's like, I have this idea, and it's not a common treatment for people with POTS, but maybe you want to try it. She's like, I can give you a course of steroids. And a lot of people that I treat who have an autoimmune component, component to their POTS, their symptoms go away when they're on the steroid. And I read that email and I was like, what? Go, go away? I was like, I was so excited and like, also kind of scared because like, what if it didn't work for me and I would just be, you know, devastated after hearing
Jill Brook: yeah.
Antonia: people's symptoms go away. No one's ever said that to me before. So I'm like, let's do it.
Why not? [00:24:00] What's it gonna hurt, you know?
Jill Brook: Yeah.
Antonia: So I started this steroid, it was like two, this is like two weeks ago. I mean, this is like just happening to me. The first day it was horrible. I felt so sick. My POTS symptoms were like the worst they've been in ages. And I was like, this sucks, you know? I got really discouraged. And then like two days later, I woke up in the morning and I was getting ready. And I'm like, I don't feel bad. Usually I feel like crap in the morning. Usually my heart rate's like 140 when I'm getting ready. And I have to sit down in the bathroom to just do my hair. And I looked at my Fitbit and it was like 80.
My heart rate was 80. And I'm like, what is going on? And as the day went on, I just kept checking. And And I'm like, my heart rate is fine. Like, nothing's, nothing is going [00:25:00] on here. I'm not sweating. I'm not lightheaded. I don't feel crappy. Like, I'm walking, I'm standing, and my heart rate's only going like 10 to 15 points higher.
I mean, it was insane. I felt normal. Yeah.
Jill Brook: And has that remained for the past two weeks?
Antonia: So, interestingly, while I was on the steroid, I felt, like, almost normal, like my POTS symptoms were gone, and we did some more blood work and we found that my inflammatory markers were normalized. So my doctor's like, okay, I feel like maybe we have like a path forward now, like maybe we can put you on some kind of autoimmune, you know, medication that can like help keep your inflammatory markers down.
I would say that my symptoms have improved a lot, but since I've gone off the steroid, they're back a little bit, but not as much as before. And so she wants me to actually do another [00:26:00] round of steroids and then do a tilt table while I'm on the steroids to see, you know, if the POTS symptoms show or not.
Um, so that's going to be really interesting. I'm starting another round, like, next week, so we'll see what happens, but I'm taking it for a month, so I'm, like, super excited. I'm going to have, like, no POTS symptoms for a month.
Jill Brook: Are you busy making plans? Everything you've been wanting to do?
Antonia: I told my husband, I was like, can we just go to Europe so I can like walk all day and...
Jill Brook: Oh my gosh, and how exciting, because even if all you do is find out that it is for sure autoimmune, there's a whole world of things to try for that, right?
Antonia: Yes, yeah, so she has
a bunch of ideas. I'm thrilled. Like, I, I feel like my doctors before were doing their best to help me with my symptoms, but not so much figure out the cause. Like, [00:27:00] they, they, you know, they did say that they think it's vaccine related and that that's why this had, this had happened, but there wasn't really any conversation around whether or not this could be cured or I could feel better, you know, more than just like a baseline of what I've been.
I feel like I've learned to live with it and, but, like, I would say, like, when I do those tilts still, like, I'm pretty debilitated, like, I get really bad blood pooling, I get really dizzy, lightheaded, super hot, my heart rate goes through the roof, you know, I get pain in my legs, like, you know, it's really depressing to get on that tilt table because, you know, for the most part, I feel like pretty good day to day with my medication and my hydration, salt intake, all that. But the idea that like, my symptoms could go away is just like, I haven't had this much hope in a really long time, [00:28:00] and I kind of just want to shoot, like, shout it from the rooftops, honestly. Like, I hope that other people, like, I hope other people hearing this, maybe, you know, you could talk to your doctors and see if they think it could help you, because it's just kind of a crazy thing to find out.
Jill Brook: Absolutely. Oh, well, we just wish you all the best with that. You'll have to report back how it goes.
Antonia: I will.
Jill Brook: Are you up for doing a speed round where you just say the first thing that comes to your mind? What is your favorite way to get salt?
Antonia: Element or Liquid IV.
Jill Brook: What is the drink you find the most hydrating?
Antonia: I would say the same thing, lemon, like lemon lime lemon lime, what did I just say? Liquid IV, or the raspberry Element. Those are my favorites.
Jill Brook: What is your favorite time of the day and why?
Antonia: I would say early [00:29:00] evening because I'm usually feeling pretty good at that point after I've hydrated and taken medication all day.
Jill Brook: How many doctors have you seen for what ended up being POTS?
Antonia: Oh boy, at least five?
Jill Brook: How many other POTS patients have you ever met face to face? Not online.
Antonia: Hmm. I have a friend who I've known since college who has POTS, and you know, she and I talk a lot but honestly not that many, and I wish I had met, I wish I could meet more, just because I feel like everyone I meet, we're like kindred spirits, you know, and they get me.
Jill Brook: Yeah. What is one word that describes what it's like living with a chronic illness?
Antonia: Difficult.
Jill Brook: What is some good advice you try to live by?
Antonia: I try to take every day as it comes, you know, it's it's really hard living with this illness and I don't discount anybody, [00:30:00] anybody's feelings that have it, I think, you know, it's, it's really a devastating diagnosis. And I think just pushing through and trying your best every day you know, is the best that you can do.
And I try to stay as positive as I can, but I have those, like, really hard days that, you know, make it, make it really hard to get through. But I try to just get through them and keep pushing ahead.
Jill Brook: What is something small or inexpensive that brings you comfort or joy?
Antonia: I have a personal fan that I keep in my purse, and it's amazing. Whenever you're like super hot or uncomfortable, I, like, I sometimes just set it on the table when I'm eating dinner out with friends, just to get that little air, you know, to keep me going upright for a while. I highly recommend that to anybody,
Jill Brook: Good one. Who is somebody that you admire and why?
Antonia: That's a hard one. I feel [00:31:00] like you know the first person that comes to mind is my husband. He also has a chronic illness and he was chronically ill long before me, and I feel like, you know, I saw what it was like to live with a chronic illness when we were first together, and he's always, you know, kept a positive attitude about it and pushed through as well, and it's been, you know, it's been hard for both of us to have chronic illness, but you know, he's a big support and he gets it.
Like he understands what it's like. So I feel like that's actually helpful for us as a couple. And yeah, I admire, I admire him a lot. And I would also say my new doctor is like top of mind right now. Seems really amazing to me. And you know, I can't, I can't thank her enough.
Jill Brook: What are you proud of?
Antonia: I'm super proud that I've been able to keep [00:32:00] working through all of this. I've definitely had some hard days and hard times with, you know, working with this illness, but I love my job and I'm really passionate about it and I couldn't imagine not working. In fact, I get super depressed when I'm not working just because it's really a huge part of who I am and I'm really proud that I can still do that and I'm going to keep going.
Jill Brook: What is an activity that you can enjoy even when you're feeling really POTS y?
Antonia: I would say watching movies, you know, it's great to just sit on the couch with a blanket and put on a great flick and enjoy that, you know, drink your drink, have your salty snacks.
Jill Brook: Last speed round question. Have you ever had to sit down or lie down in a weird place because of POTS? And if so, where was the weirdest place?
Antonia: I was at the Kennedy Center in DC, it's a theater, I was seeing [00:33:00] Wicked with my whole family, and my heart rate was 140 just sitting there watching the show, and so during intermission, I had to lay down right outside the women's bathroom on like a bench, and it was super embarrassing. I was really dressed up, I had a dress on, which is rare for me, and my husband had to ask these nice ladies to move so I could lay down, and you know, I laid there, my dad sat at my feet, and people were standing in line to go to the bathroom because it was like a 15 minute intermission.
So like all these people were staring at me and wondering if I was okay. In fact, there were some pretty nice people who are asking me if I was okay and if I needed any help. And, but I was super embarrassed. I'm like, this sucks. Like, I don't like I'm dressed up and I'm like laying down on this bench, like, you know, luckily my heart rate went down so I could enjoy the rest of the show, but [00:34:00] yeah.
Jill Brook: I just have a couple last questions. What do you wish more people knew about POTS?
Antonia: I just wish people knew what POTS was. You know, the, the amount of times I've had to explain it is just shocking and like, even to doctors, you know, I, I find it so infuriating that it's a disease or a syndrome that, you know, up to 6 million people in the United States have, and like, there's no awareness around it.
But I, I just wish more people knew what it was and knew how debilitating it was. Because it's really frustrating when someone says to you, you look fine, you look good.
I know that it's just like a nice thing for people to say to you when you're telling them that you feel ill and, you know, you're having a really hard time, but they say like, oh, but you look so great. You know, they don't realize that that's like so hard for us to hear because we feel so horrible inside our bodies.
And so I just think [00:35:00] if more people understood that it would make it way easier to live with this.
Jill Brook: And last question, is there anything you'd like to say to your fellow POTS patients out there who are listening?
Antonia: I would say don't give up. I know it's hard. It is, it can be really, really, really hard. And it can take a mental toll too. And I would just say keep pushing ahead. Keep doing anything you can to feel better. Just listen to your body and trust your body and trust your doctors and find somebody that isn't just going to treat you, but is going to help you figure it out.
You know, put the puzzle pieces together. And, you know, I think there is some hope and there is some silver lining, and I hope that you can find it too.
Jill Brook: That's that's great. That's beautiful. Antonia, thank you so much for sharing your story and all of your insights with us. We really appreciate it. And I know that [00:36:00] everybody listening is wishing you all the best going forward and that they want you to check in in a few months or however long it takes to figure out if you really are having a nice big breakthrough as hoped and let us know how it goes, okay?
Antonia: Yeah, absolutely. I'm happy to do that, and I, I wish everybody, you know, good health, and thank you, Jill, for your time, and I hope you continue to feel better too.
Jill Brook: Oh, thank you so much. And 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.
