Episode Transcript
Jill Brook: [00:00:00] Hello fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your hyperadrenergic host, and today we have an episode of the POTS Diaries with Kelley. Kelley, thank you so much for joining us today.
Kelley May: Thank you for having me.
Jill Brook: So let's start with some basics about you. What is your age? What do you live now? Where did you grow up?
Kelley May: Yeah, so I'm 17 years old. I grew up in Maryland. I currently reside there.
Jill Brook: Okay. Tell us a little bit about your hometown. What is it known for?
Kelley May: Oh, my hometown of Lutherville Timonium. We're not really known for too much.
Jill Brook: Are you known for being unknown?
Kelley May: Yeah. Yeah, we're kind of known for being unknown in a way, I guess. It's it's a very, not very eventful, I would say.
Jill Brook: Okay. Okay. So how would your friends or family describe your personality?
Kelley May: I would say I can be very [00:01:00] goofy at times, but other times I can be very serious. I'm very driven person.
Jill Brook: Okay. What are some things that you're driven about?
Kelley May: I'm very driven about school. I'm currently college searching and applying to colleges. I have big dreams. I want to pursue neuroscience. I wanna learn about the brain and how your mindset can affect POTS. I'm very interested in researching POTS and how it affects your brain or how your brain affects POTS.
I find that very interesting.
Jill Brook: Yeah. Oh, that's super interesting. Okay, maybe we'll have to come back to that in a minute, but for now, tell us about some activities that you enjoy.
Kelley May: Okay. I love reading. Whenever you see me, I usually have a book on me. I play [00:02:00] guitar. That's a fun fact. I've been doing that for the past four years, since I was a freshman in high school. Those are like the big facts about me. I do a lot of school. That's kind of my main thing right now.
Jill Brook: Do you have favorite subjects in school?
Kelley May: Yeah, I really enjoy English. Just, due to my love of reading, I love to create stories or narratives in different perspectives in different ways. I like using different techniques. It's very interesting to me. It's, it's probably very boring to other people, but I love doing that. I'm also very interested in math.
I take AP Calculus at the moment. There's something very satisfying about finding the solution to a problem. And when you get to like AP Calculus, it gets very confusing. And when you like, finally get the answers, [00:03:00] just amazing.
Jill Brook: Right. Right. Do you have any book recommendations for those of us who need our next read?
Kelley May: Oh my gosh. Yes, I have a few. I just finished A Little Life. It is around 800 pages, which is quite long, but it's really good. I love, I love sad books. For some reason it's my favorite. So my all-time favorite is The Fault in Our Stars by John Green. That all-time favorite.
Jill Brook: So, okay, this is interesting because I can see you right now. Our listeners cannot see you, but you're very smiley, but yet you like sad stories. What do you like about them?
Kelley May: I dunno. Reading, like all of these happy books. And finally, my older sister shows me The Fault in Our Stars, [00:04:00] and I read it and I don't cry. And my older sister's very confused about why I didn't cry. And I, I feel like I've just been searching for a book that can make me cry in a way, and I just have not found one.
And it's really weird because ever since, like I, I grew up watching like The Fault in Our Stars and Five Feet Apart, like everything about like chronic illnesses, even before I had the diagnosis of POTS, which is really weird. Like I had a weird obsession with it and I don't know, it just made me love it even more and appreciate the characters in the book even more.
Jill Brook: That's so interesting. So I went through a phase where I kind of got hooked on reading books about people in really, really tough situations. And I think it was when I felt like I was in a tough situation and I wanted some downward social comparison. So I got really into reading about people who were like [00:05:00] shipwrecked on an island or trapped in a, you know, cave or in a mine, you know, 500 feet below ground.
And I eventually kind of got over it, but I think for a while it served a purpose of making me feel like, woo, okay, I'm not that psyched about my situation, but I'm least I'm not in that situation.
So you had alluded to a time before POTS. Can we get a snapshot of what your life looked like before POTS? Like how old were you, what were you up to at that time?
Kelley May: Yeah, so before I had POTS I was always a very active kid. I was always doing soccer, basketball. I did softball, swimming. I just, I did a lot of active stuff. I wasn't like the best student in middle school. It wasn't, I, it really wasn't eventful during my childhood. There was no, I never had any [00:06:00] big, like, health issues.
It was pretty, I had normal interests for a teenage girl. I liked painting my nails and going out with my friends, watching movies, just regular stuff. I would all, I don't know, I just, normal teenager and then I got POTS when I was in ninth grade or I, I realized that I had POTS. Yeah.
Jill Brook: Ah, okay. Right. Having POTS and realizing you have POTS are such different things, right. So what was the first sign that things were starting to go, POTSiwards?
Kelley May: Yeah, I love that word. But I would say ever since I started having periods I would always, like, not like I would get so nauseous. Every single thing that I would eat, I would just, I couldn't eat. [00:07:00] I would have constant stomach pain, just not hungry. I would lose a bunch of weight. Just stuff that was not healthy and I like talked to my doctors about it and they're like, oh, it's just because you're just getting your period.
Like these are normal. And like I was looking online and I'm like, I feel like this isn't normal. So I got that in around like eighth grade I would say. Like that happened. I then at the end of ninth grade my periods got so outta control, I would start losing like 10, 15 pounds within like five days.
And it. That is not healthy
Jill Brook: Whoa.
Kelley May: Yeah. And so they put me on birth control and after two weeks it triggered POTS, but it didn't trigger POTS, but it triggered the symptoms. And ever since then, I got off of birth control and everything. And ever since then I have had POTS basically. [00:08:00] Consistently, it hasn't stopped.
Jill Brook: Wow. And so is, is that something that your doctors feel was the trigger? It was the birth control.
Kelley May: We don't quite know what the trigger was because they believe that I had POTS before then, we're still trying to figure it out. I had pneumonia when I was in sixth grade, so that may have caused, triggered the POTS and I didn't see it until I took birth control. So we're, that is still a thing that we're trying to figure out.
Jill Brook: Yeah. Okay. So tell us about your symptoms and how did it affect school and all the sports you were doing.
Kelley May: So at the end of ninth grade when I had, when it triggered the POTS that was during my COVID year. So all of ninth grade, I was basically just like locked in my room [00:09:00] doing homework, doing whatever, not like leaving the house. So that summer, 'cause I got POTS I realized that I had POTS in May of twenty-twenty-one at the very end of my ninth grade year.
So during that entire summer, I, I had a lot of stomach problems. They thought I had like gastroparesis or like ulcerative colitis, stuff like that. Like I would like constant stomach pain. Like I would be like as soon as I would like feel an episode coming on, I would be like rolling on the floor, like in pain. I lost a lot of weight 'cause I wasn't eating. I was constantly nauseous, like, and it was like every week a new symptom was occurring and it still is happening. So during that entire summer, I went to like GI doctors because that's what [00:10:00] we, we thought was the problem. And so I dismissed like a lot of symptoms because like I would, this is pretty funny, but whenever like I would stand up, I would get kind of dizzy and I told my older sister this, and she's like, oh, that happens to everyone. But like there were just so many symptoms like that that I just ignored. It was more like all of my stomach issues were the biggest concern because I would just lie in bed every single day. Like, I couldn't move. Like I was in so much pain.
I couldn't, I didn't wanna leave that house. Like I got very depressed during that time. It just was not like, I wasn't living basically. And so when I started ninth grade I still had a bunch of stomach issues, but that's when I started noticing that like I got really dizzy. My heart rate was really fast.
And so my doctor, my [00:11:00] GI doctor at Johns Hopkins told me to go see a POTS doctor at the University of Maryland and basically the POTS doctor at University of Maryland, they did the poor man's tilt table test, which is you lay down for, I guess. I think it was like five minutes. Stand up to see if your heart rate increases.
And my heart rate only increased like 20 beats per minute. And, and so the doctor was like, you have POTS kind of mild. They're like, okay, just drink water. Come see me in six months.
Jill Brook: Oh, I hate it when that happens. That's the worst. You get your hopes up, right? You thought, this is gonna be the day I get answers. This is gonna be the day I get treatment and I start feeling better. And you get told to drink water. Ugh.
Kelley May: And I was just like, mom and I were just kind of confused. We're like, [00:12:00] is there anything else? Like, like I have been like debilitated because of this and you're telling me to drink water, like, like what is happening? And so, after that I kind of just went on with my life with like the mindset of I'm just going to never get answers.
I'm, this is my life now. And so obviously not a great mindset. 10th grade was not a very good year, but my mom and I, we kind of made the decision to leave the POTS doctor. To go seek answers at National Children's Center in D.C. And so during that time, this was in the middle of my tenth-grade year.
So around like winter time we went we, I think that we had like a visit at National Children's Center. They thought that I would, I had some motility issues, so how [00:13:00] fast food moves through my system, they think it could have been either very fast or very slow, because I had at that point, I think two endoscopies, one colonoscopy, so many invasive tests done and no answers.
And so we arranged a visit to, for me to have a week-long hospital stay in DC over the summer. So that would be the summer between my sophomore and junior year of high school. And so during that time, I was figuring out all of my symptoms basically. I realized that I had a very fast heart rate.
My heart rate would increase, like just from sitting to standing. My heart rate would go to 180 [00:14:00] sometimes.
Jill Brook: Wow.
Kelley May: Got very unhealthy. I would just keep on getting medicine and it just wouldn't help anything. And so after that, I went to National Children's Center. So during that summer, I went in a week-long hospital stay. I and I got monometry studies done, which is basically a tube with probes in your system.
I went under twice to get probes in my body and they kind of just measure how fast water and food move through your body, if it's slow, fast, whatever, or normal. And so during that study during one of them, I had a tube down my throat and it was testing how fast my stomach moved.
And so. On day two of my hospitalization, I had this tube [00:15:00] down my throat and they made me do a tilt table test. And so they did a tilt table test while the monometry study was going on. And the doctor, he just looked at me after the test and he is like, you have severe POTS. And I'm like, I kind of knew that. I was just so thankful that someone like understood, and I'm very thankful because I do not faint, but I do go into, I think it's called presyncope, and so I get very dizzy. And after getting the results from National Children's Center, I realized that POTS going from standing to sitting position, and sitting to standing causes my stomach to move a lot slower. So the POTS causes a lot of my stomach issues. We're [00:16:00] still, we believe that it's correlated. We believe that it's correlated. We just, we don't know for sure if it's causation, but that's what we believe right now. So we got definitely have POTS, definitely have stomach issues.
A couple months after that I got diagnosed with MCAS with, which is Mast Cell Activation Syndrome. I get a lot of allergic reactions. My skin is always very red. A lot more stuff. I have a ton of symptoms and for those who are chronically ill, I, it, it's like a grocery list, like you just can't remember every single one sometimes.
Jill Brook: Yeah.
Kelley May: Yeah. And I'm very, I'm very thankful that I have a team of doctors by my side. Help me and continue to care for me in a way that I feel like all patients should be cared for.[00:17:00]
Jill Brook: Oh, that's wonderful. And it sounds like you had to work really hard to find that team, and I see why you had mentioned that you went through a time where it was pretty depressing, right? To be, to be 15, 16 and to be spending your time going from doctor to doctor, always feeling so sick and sometimes waiting to see a specialist, just to have them tell you to drink water.
That sounds really tough. So once you had the diagnoses, how much improvement have you been able to see?
Kelley May: Yeah. I've been able to understand why each of my symptoms occur. I take 20 pills a day, and that may seem like a lot, but it helps me in so many ways that people just, you can't see, like you have to almost experience it, but I got a [00:18:00] lot of my medicine really helps me. Like I, I put, I get put on a, I got put on a beta blocker, which has decreased my heart rate exponentially.
Like the max that my heart rate would go to would be around 190 per day. And it's now maxing around 120, which is amazing for me. There are always new symptoms that are occurring. Like recently I've been dealing with a lot of hand and leg tremors. Even today I got a new symptom. I started getting hand tremors and simultaneously my eye started twitching, which is so weird, but I'm not like depressed anymore that I'm getting new symptoms. It's almost like I'm, I'm getting together all the pieces in a puzzle. Like I'm finally understanding why each thing happens and what I need to do and I can, [00:19:00] like, I know what I can do in a flare-up now compared to back when I just didn't know what anything, why anything was occurring.
So, I have been able to manage my symptoms. They sometimes do get out of my control, but compared to how my life was previously, my symptoms have been more manageable.
Jill Brook: So can we talk about mindset? Because you mentioned early on that you were interested in studying how mindset can affect POTS maybe someday when you are studying neurology. And you had also mentioned that for a while you feel like you did not have the best mindset, which is very understandable given that, you know, you went through so much and it seems like your mindset now is really strong.
And so my question is largely what did it [00:20:00] take for you to get to a place of a good mindset? Do you have strategies? Do you have advice for other people? What are you interested in studying? Just anything you want. Free associate on mindset.
Kelley May: Okay. I struggle with depression and anxiety, like a lot of chronically ill people do. I see that my symptoms get worse and when my symptoms get worse, my depression gets worse, which then it creates this cycle that is you, you can't get out it. It's very difficult to get out of.
And so I still struggle with this. This is, I heard a great thing about a year ago that chronic illness is almost, you're grieving your past self, and that the stages of grief can almost happen any day and they can, [00:21:00] they can reoccur, but you almost have to get in the mindset that there's a reason why you are like ill. It is cruel that it happened, but there is a reason why, and you almost have to figure out the reason why it makes you a more resilient person. Like for me, I would say the reason is to help other chronically ill people.
Jill Brook: Oh, that's so nice.
Kelley May: In a way. Like I started like a book club for chronically ill people. I started support groups on Instagram. Yeah. And so. That is like really like my, I feel like that is my life direction. Like one of my doctors told me like, don't make being chronically ill like your entire life. [00:22:00] And I disagree with that in a way. I agree that don't only focus on you being chronically ill, because there's so many more amazing things about every single person than that one thing. For me at least, I wanna focus on other people being chronically ill and I wanna help them because I never want anyone else to reach a point of just feeling that you are, like I, I personally felt like I was worthless.
I felt like there was no place for me on this earth like, my life was going to be terrible in a way. And I think back to that time, and I'm just so thankful that I don't think that my life is worthless. I, and that there's [00:23:00] always something more to live from. And it almost like, for me at least, like, my mindset is not, I'm chronically ill, my life is going to be a disaster.
My mindset is more of what can I do to make my chronic illness like, I guess, worth it in a way.
Jill Brook: Yeah, make it mean something.
Kelley May: Make it mean something. Yes. That that's what I was trying to go for. And it takes a while for every single person, and you're always gonna have like bad times in a way, but you, you almost want to look back on those times and learn from them. And it takes a lot to say what I'm saying. Or it takes a little bit to say what I'm [00:24:00] saying, it takes a lot to actually do it. It took me over a year to do it in a way, but in my future, to go back to the mindset and everything and neuroscience, I want to research how to successfully change the mindset of a chronically ill person and make them more positive in a way, if you understand.
I'm still trying to understand what I really want to do, but I know I want to focus on the mindset of chronically ill individuals. Maybe with POTS, maybe with other stuff. And research just how to improve the mindset in a way.
Jill Brook: That's so fantastic and so exciting. And it's funny because you, you had [00:25:00] said that it took you a year to get out of your bad mindset, but I think I think a lot of us feel like way to go. A year is actually not that long when it comes to some of these humongous challenges, and it's just exciting that you wanna do that and that you've found some, some great purpose but it sounds like you already are doing things that are gonna help change the mindset in people by starting your book club and starting your support groups and you are just making a difference already. That's so cool. Do you wanna tell us a little bit about your book club?
Kelley May: Yeah, I would love to. So I, as I've said, I love books and so I was at the very end of last school year, I wanted to help more because you can say that you support like chronically ill individuals, but I feel like you have to do something if you wanna [00:26:00] say that. And for me, I felt like I wanted to help people and so I created the Chronically Ill Book Club.
Well first I started an Instagram account. That was about POTS and like I created a couple like posts about like what to do during summer when you have POTS or like what songs remind me of like being chronically ill like that kind of stuff. And I'm like, I kind of feel like I wanna have something more meaningful on my page.
So I started the book club. And so I would say there's about 15 people on it. All chronically ill. They all have different illnesses. Most of them have POTS just because my Instagram account is basically about POTS. But we [00:27:00] basically, we're on our first book right now. It's chronically ill people, I did not wanna put a timeline because I feel like a timeline scares so many of us just because we, we have, we, we get so anxious that we're going to have like a flare-up or something. Like, it's just, it's not good. So I kind of made it like a little bit more lax and I gave them the book and it's about Buddhism and how to approach chronic illness through Buddhist ideals. It is, it was very interesting. Personally I am not Buddhist, but it was more of, it was honestly more of like, kind of like a mindset book. How you almost have to make your bad situation into a better one [00:28:00] in a way. It's very interesting. I think it's called How to Be Sick.
Jill Brook: Oh yeah, yeah, yeah. Famous book.
Kelley May: Yes. Yeah, it is. It is. Its a really good book.
Jill Brook: Oh yeah. That's fantastic. How great. You've been busy doing these good things.
Kelley May: Yeah.
Jill Brook: So yeah, so I guess in our last few minutes I would just love to hear. What do you wish you had learned sooner about POTS?
Kelley May: I would say that it doesn't completely define you as a person. You don't just go up to people and just say, hi, I'm Kelley, I have POTS. No, there's so many more amazing things about each person and you just have to learn that your entire life does not revolve around POTS.
Jill Brook: What's the best support that people can give you these [00:29:00] days?
Kelley May: I would say just an ear to listen, just for them to be supportive listeners. One thing that I've noticed is people tend to lose sympathy over an amount of time. Like some of my friends, they just, after I brought it up to them, they asked a couple times about how I was doing and then after nothing, because if they can't see it or experience it, it doesn't mean anything to them, is what I've learned. I'm not saying to sympathize like every single day, just be like, oh, I'm so sorry, like you're part of everything. But just know that having POTS is its own battle. You have to learn everything about your body basically, and you, you go through chronic pain, you go through [00:30:00] so many emotions on a daily basis that people just cannot understand and just try to understand what they're going through and not overestimate them, nor underestimate them.
Jill Brook: Yeah. Yeah. Are you up for doing a speed round where you just say the first word that comes to your mind?
Kelley May: Sure
Jill Brook: What's your favorite way to get salt?
Kelley May: Popcorn.
Jill Brook: What's the drink you find the most hydrating?
Kelley May: Nuun salt tablets in water.
Jill Brook: What's your favorite time of the day and why?
Kelley May: 9:30 PM because that's usually when I wind down to go to bed, and I usually play my favorite game on my phone, Nonagrams, to go to bed.
Jill Brook: Nice. Where is [00:31:00] your favorite place to spend time?
Kelley May: I would either say the library or driving to my nearest lake.
Jill Brook: Ooh, nice. What is one word that describes what it's like living with POTS?
Kelley May: Resilience.
Jill Brook: What is some good advice that you try to live by?
Kelley May: You define who you are and not your circumstances.
Jill Brook: What is something small or inexpensive that brings you comfort or joy?
Kelley May: I guess books, I would say.
Jill Brook: What is your favorite food that doesn't make you get symptomatic? Or do you even have any that don't make you symptomatic?
Kelley May: I would say potatoes.
Jill Brook: Who is somebody that you admire?
Kelley May: I admire my mom. Because she was one of the only people who believed me [00:32:00] that I was sick during, and she advocated for me a lot. And she still does.
Jill Brook: Oh, thank you moms who do that, or anybody who does that. What is something you're proud of?
Kelley May: I would say my success in school. I'm very proud of that.
Jill Brook: What is the toughest thing about POTS?
Kelley May: The flare-ups.
Jill Brook: What is a gift that you would give to every POTS patient on earth if you had infinite funds?
Kelley May: A portable shower that you don't have to stand up in.
Jill Brook: Very nice. What is something you are grateful for?
Kelley May: I am grateful for the people who are around me. The people around me are my favorite.
Jill Brook: Okay. Please finish this sentence. People might suspect I'm a POTSie when.
Kelley May: They hate showering.
Jill Brook: Good answer. So I just have a couple more questions. What do you [00:33:00] wish more people understood about POTS?
Kelley May: That it not only affects their physical well-being, but also their mental. And that every day is a struggle. It takes it takes four times more energy to get out of bed for a POTS patient compared to just a regular person, just because of you wake up, you have heart, high heart rate. You have to take medicine, you have to constantly know all your surroundings in case you feel dizzy in case you get sick. You have to have a backup plan for every single occasion. It's, it's a ton of work and it's all of that preparation makes the day even harder.
Jill Brook: Yeah. Yeah. [00:34:00] And last question, is there anything you'd like to say to your fellow POTS patients out there who are listening? If you want to, you can tell 'em where to find your book club.
Kelley May: Yeah. It's on Instagram and it's at Rising Above POTS and you can DM me if you want any book club information or support group information.
Jill Brook: Excellent. Fantastic. Well, Kelley, thank you so much for sharing your story and your insights with us. You're doing so much impressive stuff and it's just beautiful that you're already figuring out how to make meaning out of this. And you're using your struggle to help other people who come after you.
And I hope the people of the future just appreciate, you know, people like you who are making their lives easier, 'cause they'll never know, right? They'll never know what the struggle could have been with less awareness and fewer community activities [00:35:00] and, you know, less spirit and support and, and so it's a really, really generous thing for people like you to be working to, to do all that.
So thanks a million for being here today.
Kelley May: Thank you for having me.
Jill Brook: Okay, listeners, that's all for today, but we'll be back again next week. Until then, thank you for listening. Remember, you're not alone, and please join us again soon.
