Episode 33 – POTS Diaries with Rachel from WI

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.

00:20 Lindsay (Host): Hello fellow POTS patients and nice people who care about POTS patients. I'm Lindsay and today we have an episode of The POTS Diaries where we get to know someone in the POTS community and hear their story. So today we are speaking with Rachel. Thank you so much for joining us today, Rachel.

00:34 Rachel (Guest): Thank you.

00:35 Lindsay (Host): Let’s start with some basics about you, if you don't mind. What is your age? Where did you grow up and where do you live now?

00:44 Rachel (Guest): I'm 22 and I grew up in suburbs of Chicago. Right now. I live in Madison, WI.

00:47 Lindsay (Host): Before we start talking about your POTS journey, you know, we all know that we are more than just somebody with POTS - that there's a person behind the illness, so I'd like to get to know you for a little bit if that's OK. What are a few words that your friends or family would use to describe you?

1:04 Rachel (Guest): Probably artistic, engaged, and strong.

1:08 Lindsay (Host): Those are all great. What were your favorite activities or hobbies before you developed POTS?

1:14 Rachel (Guest): I don't really know when exactly I developed POTS, but it was probably when I was around 13, so before that I did soccer and I was still an artist and I wrote short stories and things like that.

01:28 Lindsay (Host): Great. So, you mentioned that you were maybe around 13. Can you give us an idea of what life was like for you before you started developing POTS symptoms, or at least before it became a noticeable issue?

01:39 Rachel (Guest): I think I remember having a lot more energy than I do now, like sports and physical activity wasn't really a problem for me. It was relatively easy to just do school. I didn't really have trouble with things. Around 12 or so, I started to have a lot more trouble doing things that I had always done before that had been easy.

2:01 Lindsay (Host): Was it a gradual process or did you just suddenly notice that things were more difficult and you were having less energy?

2:07 Rachel (Guest): It was actually kind of a gradual process. I feel like my symptoms started around puberty, so I don't really remember, but it felt like both gradual and sudden in a way. There wasn't like a specific date that I felt like, oh, things have changed. But I just remember I'd always had trouble sleeping and then around my 13th birthday it was just like all of a sudden I was having a lot more trouble just getting up off the floor and getting out of bed. I had always been tired, it was just like a different kind of tired.

02:36 Lindsay (Host): And around that time, then, was the fatigue your most noticeable symptom, or did you have other symptoms?

02:42 Rachel (Guest): I also something a lot of GI issues, GI pain and nausea, and then just like some other GI symptoms. That wasn't the first identifiable thing for me because I didn't really have a word for the fatigue. I just was like, oh, I'm really tired and I remember there'd be times where like I'd wait for my sister, we had like a shared bathroom, so I'd be like waiting for her to get out of the bathroom in the morning to go to school and brush my teeth and I just lie down on the carpet floor outside the bathroom because I like couldn't stand to wait outside of it. And I just, I remember literally thinking, “is it normal to be this tired?” But I didn't really think much of that because I just thought, “I'm just tired. Like maybe I'm not sleeping.” And so, it was really the GI symptoms that I was thinking something was wrong and something weird and different.

03:28 Lindsay (Host): And at that time did you have an idea of what was wrong, like what it could be?

03:33 Rachel (Guest): No, I really didn't. I kinda had not had a lot of experiences with doctors. I mean I had allergies and asthma but like beyond that I didn't really have many other health issues. And I had never really thought much about my health. Yeah, I had no idea.

03:47 Lindsay (Host): So, before this it sounds like you were pretty healthy child without too many medical issues.

03:52 Rachel (Guest): Yeah, I think so. I'd always had trouble sleeping and I sometimes think was that dysautonomia or POTS that is like a part of my POTS now, but I'd always had a lot of trouble sleeping. I had asthma and a ton of allergies, but beyond that not much else.

04:07 Lindsay (Host): OK, so you're 13 and you're starting to experience some of these symptoms. What happened next? How did you get from that point to then having this POTS diagnosis?

04:17 Rachel (Guest): Well, that year was pretty traumatic and I'm probably not going to go into like too much detail about it, but I never got a diagnosis. I did see a bunch of doctors, specifically GI doctors. That kind of whole experience of seeing all those doctors and being dismissed by them was really overwhelming and traumatic for me. And so I ended up just kind of keeping everything else I was feeling inside. I knew that if I talked to family or talked to medical professionals about it, they just dismiss me or tell me it was in my head. I didn't really mention that I was feeling super unwell again until I was around like 15 or 16 and my symptoms got a lot worse when my period started. I was like, OK, maybe I have to go see a doctor because this is really weird, and that was when I started - it wasn't like fully passing out, but I was blacking out. I was really dizzy. I was really dehydrated. I was getting all these like - at the time I just thought they were rashes, but now I know they were blood pooling where like my legs would turn red and purple. And I was thinking, “This is just really weird. There's obviously something going on.” And so I told my mom and then we did go to a doctor. There was other, like, weird symptoms going on at that time, like my mouth was really dry and so then my tongue was white, which is very strange. And so we went to see the doctor and I was telling him that I was dehydrated so they did a test for diabetes - it wasn't diabetes - and they basically said, like, I'm probably just anxious and stressed out. I thought after that, “Well, it's not worth it to like, you know, speak up for myself again.” And so it wasn't until I turned 19 when I was in college that things got worse, once again. It was when I began, like, actually passing out. It was just getting really bad 'cause I was struggling to work. I saw this image on the Internet that was like a photo of a girl who had gotten out of the shower. It was kind of a little cartoon and the girl got out of the shower, had reddish purple legs, and it said ‘POTS’ over it. And I thought, “Wait, like it's not normal to have reddish purple legs when you get out of the shower?” And then I looked up POTS on the Internet, and I'm like, every single symptom matches. And so I called a cardiology clinic and I was like, “I'm passing out. Like, I have all these symptoms. I'm wondering if I could like see a cardiologist.” I went in and I said I think I have POTS and they did the orthostatic test and I got diagnosed three days later, but that was after seven years.

06:38 Lindsay (Host): Wow. So, from the time you're 13 when you first started experiencing symptoms to the time you're 19 or 20, through all of that, no doctor ever said that they thought it could be POTS or that this could be some form of dysautonomia or even some form of chronic illness?

06:55 Rachel (Guest): Yeah, no doctor. I was looking through one of my medical records and I think one doctor even did an orthostatic test and it was really abnormal and they totally ignored it. It was really upsetting. I just think being a young girl it's really easy to dismiss symptoms. No doctor said that, so I kind of had to advocate for myself after seeing information on the Internet.

07:19 Lindsay (Host): Yeah, and you did a great job advocating for yourself and, you know, researching POTS to figure out what it is and then even, you know, calling a cardiologist and making an appointment. I imagine for seven years that had to be really difficult to be dismissed and told that it could just be anxiety and having people not believe you. And then to push through all of that and find a doctor that could treat it and give you a diagnosis, that's pretty amazing that you stuck with it that long.

07:46 Rachel (Guest): Yeah, I told myself I wouldn't go to a doctor again unless I was 100% certain that what I was saying was right. And so I was very nervous because I told myself like, “Oh, it's POTS.” I was like, “Am I 100% certain that it’s POTS, 'cause I don't have the means to test it myself.” But all of the symptoms matched. I'm just going to take this risk and go.

08:07 Lindsay (Host): Yeah, and it sounds like it worked out for you. It sounds like maybe you finally found a cardiologist that was familiar with POTS and was able to correctly diagnose it. Were you diagnosed by the Tilt Table test?

08:16 Rachel (Guest): Yeah, I was. On the first clinic visit they did at the poor man's tilt table test. So I just like stood up, which the vital signs were abnormal. So then after that they did the tilt table test and I was diagnosed with Hyper-POTS. [Transcriber’s note: Hyper POTS is short for hyperadrenergic POTS, a type of POTS characterized by elevated norepinephrine levels.] My blood pressure also went up and they also did a bunch of other tests like an echo and the 24-hour Holter monitor.

08:38 Lindsay (Host): I'd like to jump in here and talk about the comic that you drew if that's OK. So, listeners, Rachel has drawn a comic that she shared with us at Standing Up to POTS, which is just brilliant. It has both a story and then also the illustrations that you drew, is that correct?

08:54 Rachel (Guest): Yes.

08:55 Lindsay (Host): It's just great and it takes you kind of through the journey of your diagnosis and then kind of explains a summary of the symptoms and how it can be treated. So in this comic, when the character – you - is getting tested for the tilt table test, I saw that you had that your supine heart rate was 89, and then it jumped up during the tilt table test to 179, is that correct?

09:16 Rachel (Guest): Yeah.

09:17 Lindsay (Host): That's a big jump!

09:18 Rachel (Guest): Yeah it did. They were very shocked. Without medication, that's still like where things are at, so medication has changed a lot for me. It was a very big jump.

09:28 Lindsay (Host): So, at that time at least before diagnosis, that was maybe typical for you to have a large increase like that?

09:35 Rachel (Guest): I never monitored my vitals before and so I had had this like sensation of my heart racing. I also had no idea what a normal heart rate really was. [Laughs] I had never really read medical stuff and so the idea of a normal heart rate - I didn't know what that was.

09:51 Lindsay (Host): Yeah, I can understand that. Some of those things we don't really pay attention to until we realize that we have this condition that affects them, like heart rate and blood pressure and things like that. So once you finally received the diagnosis, how did you feel to finally have a name that you could put to this condition and these symptoms that you were feeling?

10:09 Rachel (Guest): I wanted to feel really relieved at first, and I think I was. But I think I was just exhausted because my symptoms were just so bad at that point. Then when I got the diagnosis, I was like, wow. It's a really good thing that I have this name now and I feel kind of mad that so many people dismissed it for so long. But I was also just so tired that I was just like, I really hope I can get on some medications that might work and I can start feeling better. And unfortunately, that process took about another six or seven months because I went through about like six or seven different medications before I found a combination that helped. It was still a long road to finding something that was effective for me.

10:50 Lindsay (Host): Wow, and now that you found something that's effective, have your symptoms improved at all?

10:55 Rachel (Guest): They've definitely improved. There's still very bad days. My symptoms are still here every day. I take Florinef and I remember when we were going through like a bunch of different medications, and the ones that lowered my heart rate we're really ineffective, and made me feel a lot worst, but those were the ones they put me on first because I had the high blood pressure. And so they didn't really want to put me on Floriner because it could raise blood pressure. But eventually they did, and I just remember I got out of bed, the first day I was put on it, but the second day and I got out of bed and then I stood up and my vision didn't go black. I was so happy! I was like, “Wait!” [Laughs] Like I knew something had worked and so I guess today, like most days, except for when it's hot out, or when my symptoms are bad, when I get out of bed in the morning my vision doesn’t go black. And so that's something that's definitely has improved over time with medication. And I’m also just better at identifying my triggers and taking care of myself when I know I'm having a flare which has made it easier to manage. Before, I just really had no idea of how to manage my symptoms, and so if things are bad I was like, well, I just have to go to school and push through it anyway, and then that would make things a lot worse. Just having a better idea how to manage my symptoms made things better over time.

12:14 Lindsay (Host): And you mentioned school - are you in school now?

12:16 Rachel (Guest): I am.

12:17 Lindsay (Host): Has POTS affected that at all, going to school and attending classes?

12:22 Rachel (Guest): Yes, it has seriously affected school. I'm a part time student because of my POTS. When I was first diagnosed, I was trying to go to 12 or 15 credits a semester in order to graduate within four years, and I was diagnosed this summer before my sophomore year. And so, I just thought, well, now that I’m on medications I can handle this - being a full-time student - and so I was enrolled in 15 credits that first semester after being diagnosed and then I quickly had to drop almost all of those credits. It was a really stressful, overwhelming time. I ended up taking a lot of those credits as incompletes, fortunately, after talking to some of my professors, so I had more time to do them at the end of the semester. And then the following semester, I enrolled in just one course, and since then I've been part-time at either 9 or 6 credits, just because it's been really hard for me to manage a full course load and my symptoms. So, I'm doing it slower, but that's been better for me.

13:31 Lindsay (Host): Yeah, I imagine that would be really difficult. I mean, full time college is enough stress and enough work as it is, and then you add in this health condition and that's got to be very difficult to manage all that together.

13:32 Rachel (Guest): It was especially difficult during the process of just getting diagnosed. I was under the illusion that or once I get diagnosed, I can figure this out. Things will get easier, and then that was just not the case. I had to go through about like 6 or so different medications and each of those had their weird side effects. That was just the whole process that ended up taking almost half the year and then by the time I kind of settled on 2 medications that were most effective, I was doing a lot of physical therapy and that took a lot of time. And there were just flare days where I just really struggled to do anything. So, taking a lighter course load has meant that I can actually finish my school work.

14:12 Lindsay (Host): That's great. What would you say is the biggest life change you've had to make because of POTS?

14:18 Rachel (Guest): I wear compression every single day. At first I was very reluctant to do that because they're so hard to get on and I thought, [Laughs] why should I do this? They're just like these socks, this is kind of pointless. But then I realized wearing compressing, it dramatically lowered my heart rate when I was standing, and so I wear compression every day and I've been doing that for about three years now, and so it's almost weird to think about it as a lifestyle change because it's just so second nature at this point. A big lifestyle changes is that I wear those everyday. I also drink a lot of water and salt. I never really paid attention to that anymore, but now like make sure that I always have something salty and also like those electrolyte packets I put into water. And then I also try to move and kind of exercise every day just so that I can get blood flowing.

15:07 Lindsay (Host): You mentioned compression socks. I'm excited to hear that they are helpful for you. I tried them a couple of times and found that they were, like you said, difficult to get on and sometimes that would spike my heart rate and I ended up giving up on them. But I'm also intrigued that they have so many different styles and colors these days that it's not just always, you know, the plain tan or skin colored, but there's also, you know, ones with fun patterns and colors, and you can match outfits and all of that. That seems like a good option.

15:35 Rachel (Guest): So, I originally tried the socks, which those are the ones that have a lot of different colors, but those weren't very effective for me. So, I had to go up to the stockings ones that are thigh-high. They don't have those in a ton of different colors, which is kind of disappointing. Most of the stockings are either tan or black. They kind of just look like tights, so that's OK. And the one thing that I found that's really helpful for those is I used to be really used to be really annoyed by wearing them because they have this little band at the top and they'd fall down halfway through the day, [Laughs] which was just really, really awkward, 'cause I'd be like hiking my compression stockings up. It was very weird. And then an occupational therapist just told me about this thing - it's like a roll on adhesive, a body adhesive – you just put it on the top of the band and it keeps them from falling down and so that made me really, really happy when I found that. And I ordered it from Amazon and now my compression stockings don't fall down in the middle of the day.

16:28 Lindsay (Host): That’s funny. That's a huge help, then. I can imagine how that would be difficult if you're constantly pulling them up throughout the day. Do you have any tips then for those of us who have difficulty even putting them on?

16:38 Rachel (Guest): Well, I usually sit down and I think most people sit down when they put them on because it's kind of hard to put them on standing up. Yeah, I put them on sitting down on my bed, usually in the morning. I think just getting into routine of doing them every morning has been really the most helpful because my hands kind of get used to how I have to pull them. A lot of people will just try to like bunch them up to get them on, but that's really not effective for me. So I usually like just take the top part and pull that up first and then pull the bottom part up over my heel second kind of in like different gradients. You can also use gardeners gloves, which I don't always use, but if there's like areas that are bunched in that you can't really get them to lie flat on your leg, you can just use gardeners gloves which have traction on them. Yeah, you can put them on the side of your compression, then just kind of pull and it'll flatten out the compression against your leg.

17:29 Lindsay (Host): That's brilliant! Gardeners gloves - I love that. It sounds like you've been through kind of a lot of hardships just, you know, going through this long process of getting diagnosed and then having it take a little while trying these different medications. What gave you strength to go through all of that and just continue on your POTS journey?

17:47 Rachel (Guest): I've connected with the disability community here in Madison. Around the time was diagnosed, I met someone at this organization called Disability Pride Madison in Madison, Wisconsin, and at first it started as like a couple Zoom meetings and now I'm part of their board. It’s just been this like really supportive group of people that we’re all disabled. We all have some sort of condition. And it just helped me a lot be just with a community of people that have experiences with chronic illness or experiences with disability and see it not as a deficit, but as something that we can organize around or celebrate.

18:25 Lindsay (Host): That's wonderful. It's amazing how great it can be just to find people going through something similar, even if it's not POTS or the same illness, just being able to connect with people that understand what it's like to have a chronic illness and be disabled.

18:37 Rachel (Guest): Before having a chronic illness or being diagnosed with a chronic illness, I didn't know anyone with a chronic illness, or I probably did, but no one ever really talked about it. And then I just started being more open and now I have a lot of friends with chronic illnesses and it's really awesome. We just share memes and things that only people with chronic illnesses would get, which is just really awesome because I think there’s sometimes these things that only people with chronic illnesses get and it's really cool to have close friends who understand that.

19:04 Lindsay (Host): Absolutely. So, this seems like maybe a good time to jump back into discussing your comic then, since you're talking about sharing memes and things like that. What inspired you to create this comic?

19:15 Rachel (Guest): I actually started making this comic a while ago and didn't come back to it and finish it until now, and so when I first started making it, it was about a year after my diagnosis. I really just wanted to be able to explain to people what POTS was because it's very confusing sometimes. There's like all these different parts to it. And then also in a way, just as an educational tool to people that weren't as familiar with it. And I also think it was just a good tool for me to learn more about POTS, because while I definitely knew a lot about it from going through a lot of treatments, I hadn't read a ton of literature and so it was also just a really good learning experience so that I could learn more about my own condition.

19:57 Lindsay (Host): Do you still create comics?

19:59 Rachel (Guest): I do. I create a lot of comics. I'm actually working on a graphic novel right now. I was hospitalized last summer, so I am working on a graphic novel about that experience.

20:11 Lindsay (Host): Oh, I'm sorry to hear about your hospitalization. What other kind of comics do you make? Are they all about having POTS, or do you draw and talk about other topics?

20:21 Rachel (Guest): I've written comics on a bunch of different topics. Some of them are more fictional. A lot of them are non-fiction, so they usually explore some aspect of my identity or some aspect of my life. I've been working on one right now that's about trauma informed care, so it's also more research based. Most of them are based on my life in some sort of way, though. I have written some that are fiction.

20:44 Lindsay (Host): I think it's so wonderful that you create those to share with other people and help people who have POTS perhaps not feel as alone, like somebody else is going through this, and also educating people who don't have POTS about what it is and the diagnosis process and some of the symptoms and all of that. I think it's really a great way to get that information across. Now I would like to play a little game. We call it the “lightning round”. I'm going to ask you a couple questions and you just respond with whatever comes to mind - couple word answer is completely fine. What is your favorite way to get salt?

21:21 Rachel (Guest): I really like Chex mix.

21:23 Lindsay (Host): What drink do you find the most hydrating?

21:26 Rachel (Guest): Drip Drop.

21:27 Lindsay (Host): How many doctors have you seen for POTS?

21:30 Rachel (Guest): Maybe around 5.

21:32 Lindsay (Host): How many other POTS patients have you ever met face to face?

21:35 Rachel (Guest): Three, I think.

21:36 Lindsay (Host): What is one word that describes what it's like living with a chronic illness?

21:41 Rachel (Guest): Unexpected.

21:42 Lindsay (Host): What is something that brings you comfort or joy?

21:45 Rachel (Guest): Drawing.

21:46 Lindsay (Host): What is something you're proud of?

21:48 Rachel (Guest): I guess being here.

21:50 Lindsay (Host): That's a good one. What is something you would give to every POTS patient if you had infinite funds?

21:56 Rachel (Guest): Adequate access to understanding care.

21:59 Lindsay (Host): That's a great one. What is something you aren't grateful for?

22:03 Rachel (Guest): I'm grateful for my community.

22:05 Lindsay (Host): Finish this sentence: People might suspect you're a POTSie when...

22:10 Rachel (Guest): I am carrying around my water bottles and hiking up my compression stockings.

22:16 Lindsay (Host): That's a good one. OK, that's the end of the lightning round. Thank you for playing. Those were all really great answers. What do you wish more people knew about POTS?

22:25 Rachel (Guest): I think I wish there was more of a basic understanding by the medical profession, just like what it is and how to diagnose it and how symptoms might look like anxiety, but they're physiological and they're not anxiety. I think that the medical profession can be a little bit better with that, so I think just basic training and basic understanding of what this condition is is really helpful so that more people can get treatment for it.

22:50 Lindsay (Host): Yeah, that's a common one that we hear that it would be great if we could get quicker diagnoses and more doctors who understand what POTS is. What would you say to somebody who was recently diagnosed with POTS? Any advice or words of wisdom?

23:05 Rachel (Guest): We get it. I’m saying that as someone who's been living with POTS. It can feel kind of really isolating at first, but there are people who get it, and there are people who understand it and they never really know exactly what you're going through, but we can empathize. I'm not going to say it will get better because it might get better, but I also don't want to kind of undermine the experiences of people where symptoms don't always get better.

23:31 Lindsay (Host): OK, and I have just one final question for you. Why did you agree to let us share your story today?

23:37 Rachel (Guest): I think there should be more awareness for the lived experiences that people have with POTS beyond, like medical research. I think it's important to hear first person experiences of people who have POTS rather than people talking about POTS who don't live with it. So I just think first person experiences are important.

23:56 Lindsay (Host): That's so true. It's easy to imagine ourselves feeling less alone when we can connect with other people and hear their personal story and their experiences. So, thank you for sharing yours with us today and thank you for sharing your comic with Standing Up to POTS, too. We're really excited about that. It should be posted on our social media. So listeners, you can access it through our Facebook page www.facebook.com/standinguptopots. And hey listeners, remember this is not medical advice. Consult your health care team about what's right for you because we're all so different. But thank you for tuning in. Remember, you're not alone. And please join us again soon.

24:32 Announcer: You can find us wherever you get your podcasts or on our website, www.standinguptopots.org/podcast and I would add, if you have any ideas or topics you'd like to suggest, send them in. You can also engage with us on social media at the handle @standinguptopots. Thanks for listening and we hope you join us. This show is a production of Standing Up to POTS. © 2021 Standing Up to POTS. All rights reserved.

[Transcriber’s note: For a copy of this transcript or the transcript for any other episode of the POTScast, or if there is something we can do to make these transcripts easier to follow, please email volunteer@standinguptopots.org]