Episode Transcript
Diary with Erica
[00:00:00] Jill Brook: Hello fellow POTS patients and super people who care about POTS patients. I'm Jill Brook, your hyperadrenergic host, and today we have an episode of the POTS Diaries with Erica. Erica, thank you so much for joining us today.
[00:00:13] Erica: Thank you so much for having me.
[00:00:15] Jill Brook: Okay, so how old are you, where are you, and where did you grow up?
[00:00:19] Erica: I am 25 years old. I kind of go back and forth between New York and California, but I grew up in California.
[00:00:26] Jill Brook: Ah, okay, so what's going on with the bicoastal thing? That sounds like a lot of long airplane rides.
[00:00:31] Erica: It is a lot of long airplane rides. I am a dancer and an actress, so I kind of go back and forth between the two.
[00:00:37] Jill Brook: Oh, wonderful. Do you want to tell us any more about that? Like what kind of dancing or what kind of anything you want to tell us about it? It sounds exciting.
[00:00:45] Erica: Yeah, kind of all of the above. It's a super fun way to exercise and tell stories, and it was kind of a passion that I found pretty early on, and I started pursuing it professionally after high school, and I've just been doing it ever since, both in New York and LA.
[00:01:01] Jill Brook: Wow. Very exciting. Okay. So does that pretty much consume your whole life or do you have other hobbies and stuff that you do too?
[00:01:08] Erica: I'm still in school, so that's half of my life, but the big majority of it is performing, telling stories, and just doing all those things that I love.
[00:01:17] Jill Brook: So what do you like about performing? Most people find it so stressful.
[00:01:23] Erica: yeah, I mean, there's definitely stressful aspects to any job that you might have, but in this case, just the energy of getting to tell a story, both on camera or on stage, it's just really, really fun. It's a really fun way to spend my time getting to be different people.
[00:01:40] Jill Brook: Very cool. Okay. So what would people say is your personality?
[00:01:46] Erica: I tell stories as a career, or I'm trying to, but people would probably say that I'm more introverted. I have a very extroverted career, but I'm pretty quiet. I'm a homebody. I like to spend my time watching movies and being with close friends and making yummy food. And yeah, I'm an introverted homebody personality.
[00:02:09] Jill Brook: Okay, so what are some things that you're good at besides dancing and acting
[00:02:14] Erica: I have found a love in cooking. I like to think I'm good at cooking. That's a skill that I've learned over the last few years. I would say I'm good at anything that involves organizing or cleaning. I get great joy out of that. So probably those two.
[00:02:32] Jill Brook: fantastic! So, did you have a life before POTS, and if so, what did that look like?
[00:02:39] Erica: What's interesting is my POTS symptom started so young that I don't really know what life is like without having POTS, even though I didn't know that it was POTS at the time. So even being a dancer my whole life, POTS was something that was just always a part of my dancer experience. So I don't know any differently.
[00:03:00] Jill Brook: Okay, so talk about that experience.
[00:03:03] Erica: Yeah, so I started showing symptoms of POTS around eight or nine. It also happened to be the years where I started competitively dancing. So I was dancing harder, I was dancing more, and in those times, I'm also from a very hot climate area. And so during those years when my symptoms started showing up, I didn't know that that was POTS at the time.
For a lot of years it was kind of written off as anxiety until I did get diagnosed with POTS at 18, so 10 years later, but I don't know any differently, I just kind of figured the things that I was experiencing as a dancer and being so active was just a normal part of being an athlete.
[00:03:43] Jill Brook: So would you be dizzy a lot of the time or what were your main symptoms?
[00:03:47] Erica: Dizziness was a big one, nausea was a big one. We would practice these routines over and over again. And in between the different routines, I would feel nauseous. I'd feel dizzy. I would lose vision a lot. And I'd lose sensation in different parts of my body, like my fingertips or like just various parts of my body.
And I just assumed that was attributed to being tired from doing the dance. And I thought that was a normal thing. There were instances where my dance teacher was like, if you feel sick, that means you're dancing hard. That's good. And. To find out, that's not a normal thing. It's not normal to have those symptoms when you're active, I guess, but I was experiencing them a lot.
[00:04:29] Jill Brook: Okay, so you mentioned that these things were attributed to anxiety. So do you want to talk about that? I mean, were you seeing doctors and they were just kept telling you it was anxiety or what did that look like?
[00:04:41] Erica: It was a combination of both. We kind of just assumed they were panic attacks because there are often, at least in my experience, symptoms that I have that could be attributed to panic attacks. I can definitely say that having POTS has heightened my anxiety to some degree, just because I didn't always know what was going on with my body.
There are things like exhaustion and the nausea and the dizziness that could have been attributed to some forms of anxiety, but ultimately it took a lot of testing and one specific instance where I had a POTS trigger that turned into an episode. That I finally did get a test where they were like, oh no, you have POTS, not just anxious feelings or these days of panic attacks.
[00:05:33] Jill Brook: So how did that feel?
[00:05:34] Erica: It was kind of a relief knowing, scariest part of thinking that it was panic attacks or anxiety was not knowing how to control it. I thought I was having these panic attacks for no reason. I was just experiencing experiencing these episodes where there was nothing specific bringing it on because I didn't know it was POTS and I didn't know how to maintain those symptoms. And knowing that there was something specific causing those symptoms, and there were ways to manage them specifically because it's POTS was a huge relief.
[00:06:07] Jill Brook: Yeah. I mean, were you ever worried that you would have to stop dancing?
[00:06:11] Erica: No, and thankfully, as much as dance and POTS aren't really the best partners, it never really crossed my mind that I wanted to quit. I kind of just always wanted to push through those symptoms and find my way as an answer.
[00:06:28] Jill Brook: And so, looking back, how much anxiety do you think you had, or do you think that was all POTS, or 50 50, or like, does it completely change your interpretation of how you spent the last 10 years?
[00:06:42] Erica: I think there is a little bit of both. Obviously, a lot of my symptoms are attributed to POTS, and that's very apparent now, and I'm so thankful to know that it is POTS. I think the biggest part of having anxiety came from the not knowing and not understanding why. And even though... There were those anxious feelings because I didn't know what was happening with my body. I think the POTS was always there, and that was still a lot of the symptoms that I was having.
[00:07:13] Jill Brook: Okay. So, once you found out it was POTS, how much were you able to improve, and what helped you?
[00:07:21] Erica: It took a lot of years to learn how to manage my symptoms, even after knowing that POTS was what was happening. I...
Hmm. This stumps me because even though I knew that... I had POTS. was still kind of afraid to test certain things. Nothing had changed from the time that I started showing symptoms, but I was afraid to push even though I knew what it was. So it took a lot of years of trusting my body again, knowing that that was the diagnosis.
It took up until probably last year for me to get into class again as a dancer. The biggest episode that I had, which led to my final diagnosis of POTS was a dance class. I was in dance and that's what put me in the hospital, led to the tilt table test and I got my diagnosis and it took me a long time to be not afraid to go back to class.
And that was huge for me.
So it took probably 6 years to really learn to maintain those symptoms and just get stronger as a dancer with POTS.
[00:08:25] Jill Brook: Yeah. Is it too hard to talk about what happened in that dance class?
[00:08:30] Erica: No absolutely, yeah. I'm a POTS person with pretty low tolerance for heat, first and foremost, and I live in a pretty hot area of California. And the specific dance studio that I was in, I was dancing competitively and I was taking a class and I was dancing really hard. We didn't have central AC in the studio.
We were working off a swamp cooler and it was a hot summer day. I remember I went outside to sit in front of a fan and I think I probably cooled off a little too quickly. I also went from dancing really hard to sitting on the floor really quickly. And I remember Kind of leaning against a dance mom and putting my head down, which was odd for me just to lay down in the middle of nowhere with a bunch of wonderful moms, but very out of character for me.
And I ended up on the floor, my hands actually curled up and were kind of stuck in this position that I couldn't get out of, and my vision was in and out, my heart was racing. I remember my dance teacher called the ambulance and my parents and I was in the ICU for four days after that.
[00:09:43] Jill Brook: Oh, no,
[00:09:44] Erica: It was a pretty scary episode, but ultimately I'm so thankful that it led to a diagnosis.
[00:09:49] Jill Brook: yeah, wow. Okay, well, and I guess if you have to do that somewhere in the middle of a bunch of nice dance moms, isn't the worst place,
[00:10:00] Erica: Absolutely. I'm so thankful that the moms were there to help me and keep me calm. My dance teacher was keeping my mom calm. We had a dance dad on the fire team. He saw the address of the call that was coming in and came quickly and so he was there to help and so I'm definitely thankful that the people were there.
[00:10:19] Jill Brook: wow. So talk more about the people in your life. So nowadays, like, do your fellow dancers know that you have this? Do you know other POTSies who are dancers? Do you have a good support system?
[00:10:33] Erica: I do have an amazing support system. It's funny that I don't have any dance friends with POTS. It does make it a little more of a struggle than probably it would be just because I don't have the knowledge to bounce off of. I, post COVID, moved to New York City and that was kind of a starting over moment and I really took that opportunity to myself as a dancer with POTS because I was meeting so many people.
I started training with a wonderful teacher in New York City and I was very open about having POTS and I wasn't as open about that. So it was a really cool moment where I could kind of reintroduce myself as a dancer with POTS. But as far as having people around me that are dancers that experience the same things, it's kind of not there.
So I'm really thankful to be able to share my experiences, hopefully, so other dancers with POTS can hear my story.
[00:11:30] Jill Brook: So, do you also have the hypermobility angle to all this?
[00:11:35] Erica: The hypermobile what do you mean by that?
[00:11:38] Jill Brook: So, a lot of POTS patients also have hypermobile joints because either they have the hypermobile EDS or other kinds of hypermobility spectrum disorders.
[00:11:48] Erica: I sure do. I have a thumb that I always thought was like a cool party trick,
[00:11:53] Jill Brook: Oh, yep.
[00:11:54] Erica: come to find out it's POTS related. My knees actually dislocated a lot as a kid, also not very fun as a dancer, so that's something that I dealt with, dislocating joints, random things like my thumb. Yeah, I definitely experience a lot of that as well.
[00:12:12] Jill Brook: So do you have to take pains to protect them or do anything special with the dancing?
[00:12:18] Erica: I do, I rely a lot on compression socks and a lot on Advil. Anytime I'm going in for a big audition or a big class, I try to take Advil before I go. And then I try to use either a therapy gun after, I try to roll out my muscles as much so they're not pulling my knees out. I try to do anything I can to avoid those hypermobility issues as a dancer.
[00:12:40] Jill Brook: So what are the things you have to do, if anything, on a daily basis to stay functioning at your best?
[00:12:46] Erica: Compression socks have been a game changer in the last year and that's probably the biggest thing for me. One of my most aggressive symptoms that happen probably the most often are the leg pains that I get. I don't... I don't necessarily have a definitive diagnosis of exactly what they are, other than that they're related to POTS, so I do a lot of heat and compression to try to alleviate that pain, especially as a dancer, because it comes on a lot after dance classes or after a lot of movement.
And so that's probably the biggest thing that I have to do to get through the day. It's the most prevalent symptom I have.
[00:13:26] Jill Brook: So what's the hardest thing about living with POTS?
[00:13:29] Erica: Probably the not knowing. Some days are really good and some days I just don't feel good. And on those days, I wanna still do the things that I wanna do on a day that I am feeling good. So just kind of the back and forth, not knowing if it's gonna be a good day or a bad day. In the last year, year and a half, I moved to New York City and I lived by myself.
And so... Dealing with a lot of those symptoms as somebody who lives by herself in a big city all the way across the country for my friends and family has also been a learning curve for me. I think it's really cool that I've been able to learn how to manage the symptoms that I have in living by myself across the country, but it's probably been the hardest change and the hardest thing to learn.
[00:14:15] Jill Brook: Do you have any tricks or strategies that you use to make it easier? Like I'm thinking about how New York City can get so hot and I don't know, do you ever have days where you're just like, I don't know, it's just hard to go out and get food or I don't know, whatever it is, like do you do special things to kind of be ready for tough days?
[00:14:34] Erica: I keep something salty in my apartment at all times and I keep it not at a level where I can't reach it, so I keep it like in the bottom shelf or the bottom drawer of my refrigerator and that's a huge thing for me, I have a lot of POTS symptoms at night especially, so I like to have it accessible, so salt, salt, salt, Gatorade, soups, and a good heating pad.
Heating pad has been a game changer for me as well.
[00:15:05] Jill Brook: Okay. For the leg pain?
[00:15:07] Erica: Leg pain, even sometimes the nausea symptoms, the heating pads just really comforting. Yeah, heating pads like my sleep buddy.
[00:15:17] Jill Brook: Okay. So what's the best type of help or support that friends or family can give you these days?
[00:15:24] Erica: Probably just encouragement. I've been really open in the last year. I'm going to be sharing my story more on social media and in person especially reintroducing myself as a dancer and the support that I've gotten through sharing my story has been really cool. I was nervous, I mean as a dancer you want to do your best, you want people to think that you're doing your best and sometimes it's a little bit scary to share a story like having POTS.
Because you don't want to be thought less of as an athlete. You don't want people to think that you can't do something just because you have POTS. And to have people on social media and in real life be really supportive in me sharing my story has been really, really cool.
[00:16:09] Jill Brook: Oh, that's great. So has it been purely supportive or like what percentage? Oh,
[00:16:14] Erica: purely supportive from everybody. I'm so thankful.
[00:16:18] Jill Brook: Wonderful. So is there anything you know now about living with POTS that you wish you had known sooner?
[00:16:25] Erica: Ooh, I mean, solely symptom wise. I thought my leg pains were growing pains growing up. I would have treated them differently had I known that. There are just different symptom things, especially thinking that POTS is anxiety, and yes, some of the symptoms overlap, but in general, I wish I had been more conscious of the symptoms and probably a little nicer to myself.
There was a lot of instances, especially in dance class, where I would get frustrated. I still do, I get frustrated at myself that sometimes POTS just means that you need rest or you need a break or you need this. And sometimes it gets frustrating. So I, I wish I had learned to be a little nicer to myself regarding the symptoms earlier on.
[00:17:18] Jill Brook: Well, yeah, do you think that it changed your personality? Because to go from 8 to 18, having symptoms and thinking you're so anxious, I imagine that would really affect you during some formative years.
[00:17:32] Erica: Yeah. I really thought that I was just Struggling for no reason. And I'm proud of the things that I've been able to accomplish having POTS and having those symptoms, whether they be anxiety or POTS or anything else that's going on in my body. I'm really proud of myself and I don't think that as a young 8, 9, 10 year old I would have been as proud of myself as I am now.
[00:17:59] Jill Brook: Yeah. Are there any silver linings to having POTS?
[00:18:03] Erica: You can eat goldfish and it's good for you because it's salty. I can eat salty snacks all the time and I can just tell people I need it.
[00:18:14] Jill Brook: So is it your professional goal to become a dancer and an actress? And if so, is there anything special you'll be doing to minimize the effect that POTS has on that? Because I imagine that some of those things would involve kind of long, grueling, upright days.
[00:18:33] Erica: Yeah, the first project that I ever booked was before I kind of told people that I had POTS. And I was very, very conscious of who knew and who didn't because I didn't want people to think that I wouldn't be able to work hard in this particular project. And the project lasted six months. And after we wrapped, I did on my social media announce how proud I was of being able to accomplish that as a POTS patient.
I think going forward, I'm excited to train and learn more about my body and Test my limits as a dancer. I'm always learning new limits. Even in the last few weeks, I've accomplished more than I ever thought I could endurance wise. I lost a lot of endurance over those years of being diagnosed and then not knowing how to manage the diagnosis, having to learn about my body all over again.
I'm really excited to continue to learn about my body and the things that I can do and learn how to even Better manage my symptoms so that I can accomplish those things.
[00:19:39] Jill Brook: So if there is, imagine, let's say, a 10 year old or a 12 year old aspiring dancer out there who's listening right now, who has POTS, or maybe they don't have a diagnosis yet, but they suspect maybe they have POTS, do you have anything that you'd say to them?
[00:19:56] Erica: Yeah, listen to your body. It's okay to rest. It's okay to take a break. It's okay to give yourself a little bit of extra love because your body is doing really amazing things. And just keep working hard, learning more about yourself, about your love for whatever you're wanting to pursue. And it doesn't have to stop you.
[00:20:19] Jill Brook: Yeah, can you talk more about your victories? So it sounds like you're up to some really cool stuff and you sound very modest. And so tell us about some victories, things that, that you've been able to do despite POTS.
[00:20:33] Erica: Yeah, the first project that I ever booked, which happened to be my first audition, which was really, really cool, was The Prom on Netflix. And so I danced in Netflix's The Prom, directed by Ryan Murphy and choreographed by Casey Nicholaw, the most incredible experience. And it was just a really cool moment, something that even myself, not knowing that I had POTS, didn't think that I'd be able to do.
So then adding on that POTS diagnosis, I wasn't really sure. So that was a big accomplishment, I was really really proud of myself, I've been able to work a couple more times on a couple other projects since then, but it's only gonna get better.
[00:21:15] Jill Brook: fantastic. Excellent. Okay, so are you up for doing a speed round where you say the first thing that comes to your mind?
[00:21:23] Erica: Sure.
[00:21:23] Jill Brook: What's your favorite way to get salt?
[00:21:26] Erica: Goldfish.
[00:21:28] Jill Brook: What is the drink you find the most hydrating?
[00:21:31] Erica: Gatorade.
[00:21:32] Jill Brook: What is your favorite brand of compression stockings?
[00:21:36] Erica: I get them off of Amazon but I don't know the brand.
[00:21:39] Jill Brook: Okay, that's okay. What is your favorite time of day and why?
[00:21:43] Erica: Lunch. Because I can eat a sandwich.
[00:21:46] Jill Brook: Where is your favorite place to spend time and why?
[00:21:50] Erica: New York City. Because it's fast paced and magical.
[00:21:55] Jill Brook: How many doctors have you seen for POTS over the years?
[00:21:59] Erica: One.
[00:22:00] Jill Brook: How many other POTS patients have you ever met face-to-face in person?
[00:22:05] Erica: I think three.
[00:22:08] Jill Brook: What is one word that describes what it's like living with a chronic illness?
[00:22:13] Erica: Determination.
[00:22:15] Jill Brook: What is some good advice you try to live by?
[00:22:18] Erica: don't let it stop you.
[00:22:20] Jill Brook: What is something small or inexpensive that brings you comfort or joy?
[00:22:25] Erica: a heating pad.
[00:22:27] Jill Brook: Who is somebody that you admire?
[00:22:29] Erica: My parents.
[00:22:30] Jill Brook: Do you wanna say why?
[00:22:32] Erica: because their work ethic is amazing and I really aspire to raise kids the way that they raised us.
[00:22:40] Jill Brook: What is your favorite movie?
[00:22:42] Erica: Ooh, hairspray.
[00:22:44] Jill Brook: What is your favorite dance to dance yourself?
[00:22:48] Erica: musical theater.
[00:22:49] Jill Brook: What's your favorite food?
[00:22:51] Erica: sandwiches,
[00:22:52] Jill Brook: What is something you're proud of?
[00:22:55] Erica: being a dancer with POTS.
[00:22:57] Jill Brook: What is an activity that you can enjoy even when you're the most POTSie?
[00:23:01] Erica: Watching a really good movie
[00:23:04] Jill Brook: do you have any tricks for falling asleep?
[00:23:07] Erica: reading before going to bed.
[00:23:10] Jill Brook: Do you have any tricks for getting energy when you need it?
[00:23:13] Erica: A good hearty meal.
[00:23:16] Jill Brook: What is a gift that you would have sent to every POTS patient on earth if you had infinite funds?
[00:23:22] Erica: ooh, that's a good one. Gatorade.
[00:23:26] Jill Brook: What is something you're grateful for?
[00:23:29] Erica: I am grateful to have a really good support system, really good friends and family that are always there for me.
[00:23:37] Jill Brook: What's the most fun thing you've ever done?
[00:23:40] Erica: I've gone on a lot of really fun vacations with my family.
[00:23:44] Jill Brook: Nice. Please finish this sentence. I love it when dot, dot, dot.
[00:23:50] Erica: I love it when try something new and I like it.
[00:23:54] Jill Brook: I hate it when dot, dot, dot.
[00:23:57] Erica: I try something new and I'm not good at it.
[00:23:59] Jill Brook: People might suspect I'm a POTSie when dot, dot, dot.
[00:24:03] Erica: You can see my hand shaking.
[00:24:06] Jill Brook: Have you ever had to sit down or lie down in a weird place because of POTS, besides that one time with the dance moms? And if so, where was it?
[00:24:16] Erica: Backstage during a show, during a performance.
[00:24:19] Jill Brook: So I just have a few more questions. If there's POTSies out there who wanna see another POTSie dancing, On Netflix, where can they see you?
[00:24:30] Erica: They can see me in The Prom on Netflix. They can see me in the upcoming film, Family Leave, also on Netflix. They can come to New York and hang out with me and we'll dance together in the park. It'll be a great time.
[00:24:45] Jill Brook: Awesome. Wonderful. What do you wish more people knew about POTS?
[00:24:50] Erica: I wish people were more educated on just what POTS is. I think we've come a long way and I'm excited for people to know more.
[00:24:58] Jill Brook: Is there anything you'd like to say to your fellow POTS patients out there who are listening?
[00:25:03] Erica: Yeah, we got this. We're doing great things.
[00:25:07] Jill Brook: Awesome. And why did you agree to let us share your story today?
[00:25:12] Erica: I think it's really important to share stories where People can learn and see themselves in someone else. I know I've learned a lot from hearing other people's stories and I'm excited for people to hopefully learn from hearing mine.
[00:25:28] Jill Brook: Wonderful. Well, Erica, thank you so much for sharing your story and your insights with us. I'm excited to go on Netflix and watch you dance. We really appreciate you. And I know everybody listening wishes you all the best going forward.
[00:25:42] Erica: Thank you so much.
[00:25:44] Jill Brook: Okay, listeners, that's all for today. 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.
