Episode 72 – POTS Diaries with Rita https://tinyurl.com/2fx6nx9v

00:00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive. This is the Standing Up to POTS podcast.

00:00:28 Jill (Host): Hello fellow POTS patients and most appreciated people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries where we get to know someone in the POTS community and hear their story. Today we are speaking with Rita who has kindly volunteered to share her story so that the rest of us might benefit. So, Rita, thank you so much for being here today.

00:00:54 Rita (Guest): Hi Jill, thanks for having me.

00:00:56 Jill (Host): If we could start with the basics, how old are you? Where are you? What are you passionate about? I guess that's not so basic. [Laughs] It gets very deep very fast.

00:01:08 Rita (Guest): [Laughs] I am 31. I live in the Boston area and I'm passionate about a lot: I'm passionate about advocating for the chronic illness community. I love movement, I love music, and yeah, creating a meaningful community around me.

00:01:24 Jill (Host): Oh, very nice. When you say you love movement, can you tell us more about that?

00:01:30 Rita (Guest): Yeah. So, I'm a Pilates instructor. I was a dancer before I was diagnosed and I just recently got back into ballet. Yeah, it's all kinds of... all kinds of movement.

00:01:40 Jill (Host): Oh, very nice. OK, we'll have to talk a little bit more about that. OK, can I ask, how would your friends or family describe your personality?

00:01:50 Rita (Guest): Patient, thoughtful, direct, and resilient.

00:01:55 Jill (Host): Oh, that's a good trait to have. OK, can we make you brag about yourself for a moment? Tell us some things that you're good at.

00:02:03 Rita (Guest): I'm a good listener, and that comes from different trainings I've had in my life for a couple of different careers, but a couple of which involves learning how to listen well, keeping an optimistic mindset, and I tend to look to have the perspective of keeping my glass half full as best I can, and I think giving others little reminders that they are on the path that they're meant to be on.

00:02:25 Jill (Host): Very nice. That was an interesting little teaser - you said you have had a couple different career training paths in the past that have trained you to be a good listener. Do you mind talking about that?

00:02:38 Rita (Guest): Sure, yeah. So, I studied acting in my undergrad and was actually living in New York in my life before POTS being an auditioning actor and dancing there as well. And I'm now a Board Certified and Mayo Clinic Certified Health and Wellness Coach, which is largely about listening to the client.

00:03:00 Jill (Host): Oh, that is excellent. Can you tell us more about your life before POTS? You know I don't know anything except for what I see in TV, but like being the auditioning actress and dancer in New York City, that sounds, I mean is, is it as exciting as it looks?

00:03:15 Rita (Guest): Yeah, yeah, it was so so so much fun. Busy, very physical, as you might imagine, lots of commuting to and from different locations for auditions. And yeah, rehearsals, a lot of very physical life. One of my favorite aspects of that era of my life was meeting new people constantly. I still... New York is still my favorite place in the world.

00:03:37 Jill (Host): Wow, sounds like you were probably immersed in this really sort of intense, demanding lifestyle. And then what happened?

00:03:46 Rita (Guest): You know, I had fatigue to start, you know, overwhelming fatigue. And then it became harder to walk to subway stations and going up and down stairs with tachycardia. So, so my illness slowly, it felt like it seeped into my life. And yeah, so that did change my path in life.

00:04:07 Jill (Host): Wow. OK, so you know we're used to hearing maybe more about the dramatic onsets, like after an infection. Did you ever figure out anything that might have triggered yours? Or it was just such a slow onset that it just kind of creeped on?

00:04:25 Rita (Guest): I think it was likely to be an infection. I think, due to how fast paced my life was, I was... I was showing symptoms and maybe was pushing through them as best I can until they were really too great an obstacle to ignore. But I don't have a definite answer to that question, but I think it was likely an infection.

00:04:44 Jill (Host): Sounds like you kind of had this really cool life, and then we know that POTS happened, but it sounds like you have a cool life again now as a Mayo Clinic health coach. OK, so I'm excited to hear how you got from point A to point B. So, tell us about like what happened then? You started getting fatigued little by little. At what point did you decide that you had to see a doctor and how long did it take to get a diagnosis?

00:05:09 Rita (Guest): So, when I was living in New York, I reached the point where I was really not able to function on my own, so I went to visit with my parents and see my doctors closer to Boston and I was planning to be home for a couple of days, but it ended up being many many months. And I saw a couple of doctors initially. And I’d say I was diagnosed - I'm so lucky - within two months or so by a cardiologist, which I know is incredibly fast and rare for the POTS community.

00:05:38 Jill (Host): Did you have high hopes that you would be able to improve a lot and get back to your life, dancing and acting? Or at some point, I'm guessing there was this moment of, “Oh no, my old life isn't working anymore.” What did that look like?

00:05:51 Rita (Guest): Fine line, right, keeping that sense of hope and staying motivated to do things that are meaningful to us and then also incorporating some acceptance. So, it took some time for me to figure out what can I keep and what can I not keep in terms of, not what's meaningful to me, but how do... how do I bring those things to fruition? So, creativity was something that was really important to me. I did go back to New York after being diagnosed and stuck it out for another two - almost two - years, trying to get back to what I used to be able to do. And there are some things I could keep doing and some things that were not possible anymore. It didn't bring me joy because it was too physically demanding. It worked against me. So I found ways to express, for instance, my creativity. I do a little bit of acting still but I'm actually more of a writer now. And in New York, I was doing comedy writing and sketch writing, and now I write more about chronic illness. However, I incorporate some humor into it. So it's just rewiring how to express the things that are still meaningful to us, but maybe the expression will look a little bit different.

00:06:58 Jill (Host): Were you always this resilient or did you have moments where this just really bummed you out?

00:07:04 Rita (Guest): I've been devastated. Yeah. There have been times that are... chronic illness can just... in spirit and body and mind just really be painful. And I always thought, like if I could just stand, it's the image of standing up and it's so relevant to POTS, but if I could just stand up this one time and sometimes that meant getting on stage. Sometimes it meant teaching a Pilates class or, you know, the struggle was always there, but I think really staying focused on what's important to me and also thinking about who can support me in this new era of my life. I think that that was there was definitely some change in the landscape as to who was going to be most supportive in my life. And sometimes that's unexpected, for better or for worse, who is able to best support us, but that too was something that was a part of my life before and it looked a little different now that, with chronic illness, but still surrounding myself with things that are going to be helpful and meaningful.

00:08:04 Jill (Host): So that's great. Can you talk a little bit more about that two years where you had the diagnosis and went back to New York City and tried to make it work?

00:08:14 Rita (Guest): Yeah. There was some denial, certainly, that I was hoping that I could just throw myself back into the life I had before. And I'd say it was a pretty lonely time because I didn't share much about my health with others. So, you know, I think something that can be so challenging about chronic illness is that we don't have - oftentimes don't have - a physical manifestation that others can see and make them automatically aware of how debilitating our symptoms can be. So, I'd say it was a really lonely time. I really felt like I'm in this on my own. I have to stick this out and it was fruitful because I ultimately realized I do need to adapt my life to my new physical circumstances. But it was... it took me time to really grasp that and say, “Hey, you know what? I don't have to physically struggle this much, day in and day out.”

00:09:05 Jill (Host): What did you decide to do from there?

00:09:07 Rita (Guest): I’d say a big shift was actually when I started the CHOP protocol and started physically reconditioning, which is not something I heard about from a doctor, but actually a peer, and so I was able to get stable enough to really consider my circumstances and think, OK, what will be best for me? [Transcriber’s note: CHOP protocol is an exercise protocol released by the Children's Hospital of Philadelphia. You can read more about it on our website: https://www.standinguptopots.org/livingwithpots/exercise] It got me out of bed and it got me able to at least walk around and just kind of get clarity of mind when I found a little bit more physical conditioning, actually. And I had been going back and forth to Boston for my doctors, which was really it was kind of like, how long can I sustain this for? It's not too short a trip to keep doing over and over again. So for that reason and coming closer to where my family is in the Boston area, I ultimately decided to move back here. And yeah, I... throughout all of this had really found such meaningful connections with others in the chronic illness community, and I was just thinking, what can I do to help this demographic of people that I relate to in a very unique way? And that's when I started to consider coaching program and just think about how I can support this demographic in living as best equality life is possible with their given circumstances.

00:10:19 Jill (Host): That's great. And is that when you also started taking up Pilates to become an instructor?

00:10:26 Rita (Guest): So Pilates is actually a through line throughout all of this. I started my training really right before I started showing symptoms, so I paused the training and then circled back to it. So it's something I still do now and I don't know how, but I taught class while I was symptomatic. I would teach 7 classes a week and just be near passing out all the time. Yeah, I talk about really trying to like push myself through old circumstances, but Pilates I loved before since I was, you know, dancing more and I love now because it's, for me personally, it's a staple of my conditioning, especially on very symptomatic days. It's something that's already on the ground and I can keep my head down. So, that, too, has kind of morphed with me, and I'm teaching one class a week now and just a local studio here. So it's something that still brings me joy, and it's been very adaptable throughout these different stages of my life.

00:11:20 Jill (Host): That's great. OK, so speaking of the different stages of your life, what were your symptoms at your very worst? What was your darkest moment, symptom wise?

00:11:31 Rita (Guest): Not being able to walk, yeah, I can picture that time when I was staying at my parents' house and just leaning on my mom who is obviously significantly older than me. And I remember a neighbor yelling across the street. It was just the hardest thing to walk down the driveway to my mailbox. That was the event of the day. And I remember a neighbor yelling across, like, “Hey, aren't you supposed to be helping your mom walk? Why is she helping you?” There's something... it's just like... yeah.

00:11:59 Jill (Host): Wow.

00:12:00 Rita (Guest): I know, I know. Well, you know people say crazy things. But I think the shock of just living such a physical life and then feeling like that was so stripped away from me, obviously it's physically very uncomfortable, but the... the emotional fear that comes with that. You know, it feels really like what's going to become of me? Definitely some of my hardest days. I have to say, too, doing the CHOP protocol were some of my hardest days. It was really challenging for me the first three months or so. Added fatigue, more pain. It was the event to just pedal two minutes on the recumbent bike. That was my day, and those were some really really tough days, and again, very like lonely experience.

00:12:44 Jill (Host): When you said you had that feeling of “what's gonna become of me,” do you mean that you were worried what's gonna happen physically? Am I going to keep degrading physically? Or what's going to happen to my career or my social life? Or was there anything specific that you were worried about?

00:12:59 Rita (Guest): I think firstly, physically. I didn't understand at the time what the potential was to maybe improve my symptoms, or I had very little access to context as to what my future physically might be. And then yes, I've been very focused on my career. That was a huge painful question mark as to, well, if I can't walk, how am I going to dance? How am I going to stand on stage? All of that felt very threatened.

00:13:29 Jill (Host): Mmm hmm. How much have you improved physically now that you've had some time to work on it?

00:13:35 Rita (Guest): Significantly. Yeah, I'd say my quality of life is 10 times better than if we were just in that old old setting with the neighbor. Yeah, I'd say that I'm... I have flares more now with my symptoms and the other side of that coin is I've adapted. So, my life is different. I sit more of the day - much more of the day - than I used to, so I've largely improved my symptoms and that's paired with some acceptance of what I'm able to do as well.

00:14:04 Jill (Host): One thing you had mentioned that you do is that you write. Can you tell us more about?

00:14:08 Rita (Guest): Yes! Like I mentioned, I wrote sketch comedy when I was in New York. I just enjoy writing. And then some of my employment changed around, like many of us for the pandemic, and so I started writing about my health, which was probably the most candid I've been in sharing my story about... about my health. And yeah, it's somehow been the medium that I feel most comfortable talking about my experience. And I had a couple of articles in Health Magazine. They have a section of their magazine that's for invisible chronic illness. My pieces fit very well in there, and it's just been a joy, and it's been a really nice home for my creativity.

00:14:50 Jill (Host): That's excellent! It speaks to the resiliency that you talk about. What has given you strength through all this? I mean... or are you so resilient you didn't need it? I mean, did something help you cope or, like, you seem very positive and... yeah, what helped?

00:15:04 Rita (Guest): Yeah, I definitely think my mom. She was really with me during the worst of it and, during the worst of it meaning when I wasn't diagnosed yet. There was a lot of mystery, a lot of question marks. Her sticking by me really was so meaningful at the time and I think some it's pulling from my willpower a lot. I remember promising myself that I'm gonna make the most of whatever this life has offered me and I think the biggest lesson I learned is that that picture of what my life will look like can change drastically and I can still enjoy my life. That was not evident to me at the beginning. I thought, well, if I can't be an actor, if I can't be on stage running around Manhattan auditioning, then I don't want my life, that it's not as meaningful to me. It's not what I wanted. And in fact, I can still create a life that I enjoy, that is meaningful. It was some growing pains to realize that that might look different than I always imagined.

00:16:03 Jill (Host): I think that's a really important point. I think that is probably the biggest thing that I learned too, and I guess the way I think about it is I always thought that, “Oh I worked so hard for this good life I have,” and I did not realize that there's 100 or 1000 versions of a good life you can have, and it doesn't even take that long, necessarily, to get to another version, but when you're so engrossed in one, it seems like it's that or nothing.

00:16:31 Rita (Guest): And I do think that there's a mourning period of really letting go of the life that I thought I was going to have. There was... there was definitely before I could really move on and start to reimagine what a meaningful life would be, there's a... there's a painful mourning time of letting go of that initial vision.

00:16:50 Jill (Host): Yeah. Do you feel like you're the same person? Do you feel like this changed your personality at all, to have gone through this?

00:16:56 Rita (Guest): No, I don't think so. I do think that I can say that now, but maybe three years ago I would have answered differently because I felt more like I was my illness. So, during that time I would have said, “Yes, I'm a totally different person.” But I actually think now that I've lived with POTS for long enough, I've arrived back to myself and I am myself with a chronic illness, instead of feeling like I am my chronic illness.

00:17:25 Jill (Host): That's great. You had mentioned that you went through the Mayo Clinic coaching program. Can you tell us a little bit about that, and does it help you to help other people with their health?

00:17:35 Rita (Guest): Oh, such a good question. Absolutely, yes! I became interested in coaching as a way to help people who are newly diagnosed and basically the support I wish I had.

00:17:46 Jill (Host): Yeah.

00:17:47 Rita (Guest): So, the training is to help people build skill around making choices that are good for them, which is different for every person. So I think one thing that gets confused is that health coaches are... have a prescription workout plan or a diet that everybody should have. And as we know, people with POTS are supposed to have lots of salt. You know, everybody has different needs that's not true for the general population. So, yeah, it's about partnering with people to help make the most meaningful life out of their circumstances and help them feel as well as their circumstances allow. And that doesn't mean absence of symptoms, that means do they feel loved? Do they feel connected? What's their relationship with themselves? All of those things actually come from you, the person, not from the coach.

00:18:32 Jill (Host): That's beautiful. You know, I always think about how the next generation of patients is going to have all these nice resources because of people like you who are creating the service or the support that they wish they had had, and they're never going to realize how lucky they are that people like you made your experiences mean something to save other people from having those same experiences. So that's lovely that you're doing that. So, speaking of choices that help you be the best you can, do you have any, like, habits or things you do on a daily basis that really help you to feel better?

00:19:06 Rita (Guest): Oh man, I'd say like 30% of my day is spent doing things to cater to my POTS. I move every day and I say that that might be a 10-minute Pilates YouTube video, some days I can even run. Like I said, sometimes I take ballet classes, but I move every day. I just have sort of like a menu of, depending on where my symptoms are, this option is better for this kind of day, etc. I have a "nun” tablet every morning or "noon” tablet [Nuun]. Always have salt pills nearby. I'll take some of those throughout the day as needed. The way I'm sitting actually right now I have my legs crossed up on my chair.

00:19:43 Jill (Host): I'm sorry I'm laughing because I'm picturing a Gidget, the friendly, the nun, when you say 'nun' tablet. I think that would be a funny, cute kind of tablet that we should have. [Laughs]

00:19:56 Rita (Guest): We call it ‘nun’ in my house, and then I realized, I was like, I don't think anybody else calls it that. [Laughs]

00:20:00 Jill (Host): Anything else, anything around sleep or eating or anything like that?

00:20:06 Rita (Guest): I am vegan and gluten free to try to keep down inflammation. That doesn't necessarily help everybody, but those are just ways I keep my inflammation down as much as possible. Sleep, I take magnesium at night. Sometimes I take a prescription as about the same time I got diagnosed with POTS, I also developed restless leg syndrome which has persisted over the years. I get up very slowly. I firstly allow myself to sleep at least 8 hours, and I get up slowly. I schedule my day to have slower mornings, knowing that for me, that's when I tend to be the most symptomatic.

00:20:42 Jill (Host): Smart. Is there anything that you know now about living with POTS that you wish you had known sooner?

00:20:48 Rita (Guest): Now I have greater understanding that, at least in my case, there were options on how I could improve my symptoms. At the beginning I had very little information and had no idea what I could do to improve my symptoms other than trying a couple of medications. I didn't know what to expect in terms of how much I could improve my symptoms.

00:21:09 Jill (Host): Has anything at all positive come from having POTS? Is there any silver lining at all?

00:21:16 Rita (Guest): I think so many.

00:21:17 Jill (Host): Oh, good!

00:21:19 Rita (Guest): Yeah. I mean, equally as many difficult things, so it's not like, oh, it was the best thing that ever happened to me. But yeah, I think the people I've met through the new career that I've created, I have much more authentic friendships and connections with my family. I trust my ability to do difficult things and my relationship to my body has shifted in such a way that I've gone through so much with my body that I have a totally different appreciation for my physical abilities as they are today.

00:21:50 Jill (Host): I really resonated with what you just said about having authentic relationships with people. You made me realize that, yeah, it does seem like when you connect with other people in this community, they don't have the veneers up. Like maybe it's because everyone had to already be so vulnerable in so many ways that they don't have trouble being vulnerable with each other. I don't know. Do you have any insights about that because I really feel it, too, that people are really authentic in this community and it’s so refreshing and I hadn't seen that so strongly in other communities before this one. Is that your experience?

00:22:26 Rita (Guest): I felt kind of like a safe landing place with other POTS community members. I think that there might be something... something to the fact that it is an invisible illness. It's almost like there could be a crowd of us and we wouldn't know unless we identified each other, so it's like, Oh my gosh, you too? And so there's that understanding, and I think deeper connection, that other people... we could be standing together and people wouldn't know that we have this deep connection, this very unique experience. Yeah, I think shared... shared life experience can really bring people to the core of it pretty quickly.

00:23:01 Jill (Host): Yeah. Are you up for a speed round where we ask you to just say the first thing that comes to your mind?

00:23:08 Rita (Guest): OK. Wish me luck.

00:23:05 Jill (Host): I know. [Laughs] And we acknowledge that your brain is probably not getting enough oxygen, so that makes it fun and interesting. What is your favorite way to get salt?

00:23:19 Rita (Guest): Potato chips.

00:23:21 Jill (Host): What is the drink that you find the most hydrating?

00:23:24 Rita (Guest): Nuun tablets

00:23:26 Jill (Host): What's your favorite time of day and why?

00:23:30 Rita (Guest): 10:00 AM because I've hydrated, I've had my cup of coffee, and I have the most mental clarity.

00:23:38 Jill (Host): Where is your favorite place to spend time and why?

00:23:42 Rita (Guest): I’d say the beach, lying down on the beach. I think it’s very comforting.

00:23:47 Jill (Host): Oh, that sounds nice. How many doctors do you think you've seen for POTS?

00:23:52 Rita (Guest): Ten, 12, 15ish.

00:23:55 Jill (Host): How many other POTS patients have you ever met in the flesh face to face?

00:24:01 Rita (Guest): 10ish.

00:24:02 Jill (Host): What is one word that describes what it's like living with a chronic illness?

00:24:09 Rita (Guest): Constant.

00:24:09 Jill (Host): What is some good advice that anyone ever gave you about anything?

00:24:15 Rita (Guest): I have this sign behind me on the wall, but Brene Brown's kind of tagline is “Stay awkward, brave and kind, y'all.”

00:24:22 Jill (Host): Oh, I like that very nice. Awkward, brave, and kind. What is something small or inexpensive that brings you comfort or joy?

00:24:32 Rita (Guest): Toast.

00:24:33 Jill (Host): Who is someone you admire?

00:24:36 Rita (Guest): My sister.

00:24:38 Jill (Host): What is something that you are proud of?

00:24:41 Rita (Guest): The way I can authentically connect with people.

00:24:45 Jill (Host): What is an activity that you can enjoy even when you're having a really POTSie day?

00:24:50 Rita (Guest): Watching New Girl.

00:24:52 Jill (Host): What is the toughest thing about POTS?

00:24:55 Rita (Guest): The invisibility.

00:24:56 Jill (Host): What gives you energy, if anything?

00:24:59 Rita (Guest): Music.

00:25:00 Jill (Host): What is a gift that you would give to every POTS patient if you had infinite funds?

00:25:06 Rita (Guest): Each other phone numbers.

00:25:08 Jill (Host): Oh, good one! Connection. What is something that you are grateful for?

00:25:13 Rita (Guest): I’d say my fiancé's patience.

00:25:16 Jill (Host): If you could finish this sentence: I love it when....

00:25:19 Rita (Guest): I love it when I open my front door and my neighbor Bob is blowing me a kiss.

00:25:25 Jill (Host): Oh, very nice. I hate it when....

00:25:29 Rita (Guest): People bite their nails.

00:25:31 Jill (Host): People might suspect I'm a POTSie when...

00:25:34 Rita (Guest): I pull out my salt pills out of my purse.

00:25:38 Jill (Host): OK. I just have a couple more questions. What do you wish more people knew about POTS?

00:25:45 Rita (Guest): POTS, and also invisible illness, is that we cannot see someone health, and I think that people understand that more and more about mental health, but the same is the case for physical health.

00:25:57 Jill (Host): That's a good way to explain it. Is there anything you'd like to say to your fellow POTS patients out there who may be listening?

00:26:04 Rita (Guest): Don't do it alone.

00:26:07 Jill (Host): Mmm. Why did you agree to let us share your story today?

00:26:13 Rita (Guest): I kept my story so private for a long time and since starting to write about my health, I've noticed what an impact a shared story can make. And so, I'm hoping that somebody either resonates with some of what I'm saying and maybe feels a little bit of hope about what their future could hold for them, and ultimately for someone to feel a little less alone.

00:26:38 Jill (Host): That's beautiful. Well Rita, thank you so much for sharing all your stories and insights with us. We really appreciate it. And I know that everybody wishes you only the best going forward. Hey listeners, thank you for listening. Remember, you're not alone and please join us again soon.

00:26:53 Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you. This show is a production of Standing Up to POTS, which is a 501(c)(3) nonprofit organization. You can send us feedback or make a tax-deductible donation at www.standinguptopots.org. You can also engage with us on social media at the handle @standinguptopots. If you like what you heard today, please consider subscribing to our podcast and sharing it with your friends and family. You can find us wherever you get your podcasts or at www.thepotscastcom. Thanks for listening. © 2022 Standing Up to POTS, Inc. All rights reserved. [Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopots.org]