Episode 75 – POTS Diaries with Madison from Chicago https://tinyurl.com/potscast75

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.

00:00:29 Jill (Host): Hello fellow POTS patients and super people who care about POTS patients. I'm Jill Brooke, your hyperadrenergic 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. So today we are speaking with Madison, who has kindly volunteered to share her story so that the rest of us might benefit. Madison, thank you so much for joining us today.

00:00:55 Madison (Guest): Yes, thank you for having me.

00:00:57 Jill (Host): So let's start with the easy stuff. What is your age and where are you?

00:01:02 Madison (Guest): I am 21 years old and I'm in Chicago, IL.

00:01:06 Jill (Host): OK, so I wanted to ask what is your hometown known for, but I think everybody knows Chicago. But tell us something about Chicago that we might not know.

00:01:15 Madison (Guest): Yeah, I mean everybody probably knows it's called the Windy City. But Chicago is a really cool place, but something that like people really don't know is that when people say that they live in Chicago, doesn't always mean that they live in the city... [Laughter] ...or in Chicago. I live in a suburb in Chicago.

00:01:37 Jill (Host): OK, and tell us about the pizza situation there. Isn't there like a Chicago versus New York thing about pizza?

00:01:43 Madison (Guest): Yes, I believe there's some rivalry... [Laughter] ...with New York style pizza and Chicago style pizza. I personally think that Chicago pizza is amazing.

00:01:56 Jill (Host): And is Chicago pizza - is that like really deep dish, or what's special about Chicago pizza?

00:02:02 Madison (Guest): I think that there's a big variety of what's special... [Laughter] ...about it 'cause you go to so many different like pizza places. Some here have deep dish, some don't, so... yeah...

00:02:15 Jill (Host): OK, and they're close to Wisconsin, so they must have an advantage on fresh cheese somehow.

00:02:22 Madison (Guest): Correct. [Laughter]

00:02:23 Jill (Host): [Laughter] OK, so how would your friends or your family describe your personality?

00:02:29 Madison (Guest): I would say my friends and family would describe me as outgoing, caring, probably sensitive, and creative.

00:02:38 Jill (Host): Ah, very nice. OK, tell us some things that you're passionate about.

00:02:44 Madison (Guest): I would say I'm really passionate about wellness, living like a healthy life, and I love doing yoga, and I'm really passionate about like hippie living.

00:02:58 Jill (Host): Did you say hippie living?

00:03:00 Madison (Guest): Yes.

00:03:01 Jill (Host): Oh OK, tell us more. What is hippie living to you?

00:03:05 Madison (Guest): Yeah, so I think it definitely came after I was diagnosed with POTS to understand like really who I was and just found like the inner hippie in me and just kind of go with the flow... the yoga... I'm doing a lot of like alternative medicine things as well.

00:03:27 Jill (Host): Oh neat. OK, well maybe we'll get more into those, but I like that. That's cool. So OK, I'm going to ask you to brag about yourself for a minute, which might not be a very hippy-like trait, but just so we can get to know you. Can you tell us something, or a few things, that you're good at?

00:03:46 Madison (Guest): Yeah, I love running support groups. I love helping other people. I'm really good at working with kids - that's what I do for my job.

00:03:57 Jill (Host): What do you like about working with kids?

00:04:00 Madison (Guest): [Laughter] I love being able to connect with kids on such a different level than like I ever experienced with adults because I think that like I was a kid who like wasn't really understood all the time, and so the kids that are having a harder time... I tend to like connect with them and it's just a really like amazing experience for me to have.

00:04:26 Jill (Host): Oh, that's really neat. You don't feel like sharing what you do for your job with kids, do you?

00:04:32 Madison (Guest): Yes, so I am a Montessori assistant guide.

00:04:37 Jill (Host): OK, so what is your job technically? What is your mission?

00:04:41 Madison (Guest): So technically, I'm with an assistant teacher that assists with toddlers.

00:04:47 Jill (Host): Oh wow...

00:04:38 Madison (Guest): Yes.

00:04:49 Jill (Host): ...OK, so you get you get - you get really young kids. Wow, well what a neat way to think about that. So, OK can you give us a snapshot of what your life looked like, say, in the year before you got POTS?

00:05:02 Madison (Guest): Yeah, so I think my life... I mean before I had POTS I was really active. I did gymnastics from like when I was four all the way up till high school. And then I was a competitive rock climber before, and so I was just always active. Always wanted to move my body.

00:05:23 Jill (Host): Wow, a competitive rock climber.

00:05:26 Madison (Guest): Yeah, I did not want to compete because I was really nervous but I was on the team.

00:05:33 Jill (Host): OK, I just have to take a little detour, so like, what are you graded on when you're competing at rock climbing? Is it speed or...?

00:05:40 Madison (Guest): There is speed climbing, which you can do, but the team that I was on was technique, so the way that you climb - how does it look? And it was really cool... really cool to be an... a rock climber and experience that, for sure.

00:05:57 Jill (Host): OK, well... and it doesn't sound like the kind of thing that would work great for somebody with POTS, so let's talk about your POTS. What was your first sign that something was amiss?

00:06:11 Madison (Guest): Yeah, you know... I mean, it's hard 'cause I think a lot of times I think back and like, I've had issues probably most of my life. Just the disregulation... not being able to like regulate my body all the time and feeling uncomfortable - but everybody would call it anxiety.

00:06:31 Jill (Host): So what was the first time you had something happen where you're like, “Oh, I better go see a doctor.”

00:06:37 Madison (Guest): Yeah, I mean, there was a lot of those times. My parents never stopped asking for more questions. Like when I was younger, they would constantly ask the pediatricians to make sure that everything was good, but all the blood work and tests that they were doing were fine, but my parents like kind of knew that there was something more.

00:06:58 Jill (Host): So what kind of signs were you given?

00:07:02 Madison (Guest): Yeah, like I had a lot of temperature regulation issues. So, when I would go swimming when I was younger, my parents would have to... have to put me in a wet suit because I would get a fever every time I would get out of the pool because my temperature was so... like, I just couldn't regulate my body temperature. My lips would turn purple, and so it was definitely a sign.

00:07:29 Jill (Host): Interesting. So what led to you getting a POTS diagnosis? What kind of symptoms and...?

00:07:36 Madison (Guest): Yeah... so you know I had these symptoms that I kind of just thought were normal my whole life, and then I started getting more and more symptoms, probably around when I was like 12 years old.

00:07:54 Jill (Host): Symptoms like... the normal POTS symptoms?

00:07:58 Madison (Guest): Yeah, so like my anxiety was increasing, but it was like, I couldn't control it, and I was having GI issues then, starting in high school. And that's what started the, kind of, process of like... what is going on? So sophomore year of high school, my GI issues like just got really bad, so I started seeing a GI doctor. And of course, that didn't help at the time, but led me to senior year being diagnosed with Lyme disease, and that's kind of what sparked the whole POTS thing.

00:08:37 Jill (Host): Oh OK, so for anybody out there who's not too familiar with Lyme disease... I mean, they've probably heard about it... but do you just want to tell people what that is?

00:08:47 Madison (Guest): Yeah, so Lyme disease is a tick-borne illness, and I have chronic Lyme. I know I was bit by a tick. [Laughter] I was camping and so I was bit by a tick and I didn't get diagnosed for a long time. But Lyme disease affects a lot of different things. That kind of overlap with POTS, but it's also not believed a lot.

00:09:13 Jill (Host): Right, and hopefully that's getting a little better. Doesn't John Hopkins now have a whole Lyme disease department?

00:09:19 Madison (Guest): Yeah, it's getting a lot better. It's getting a lot better because I think that there's just so much more of it now too, so yeah.

00:09:28 Jill (Host): Yeah, my understanding of Lyme disease is that it can really mess up your immune system among other things, right?

00:09:36 Madison (Guest): It can really mess up your immune system, completely.

00:09:41 Jill (Host): OK, so do you have some effects of that as well, in addition to your POTS?

00:09:47 Madison (Guest): Yeah, so it's hard to know like, what's what, you know? Because I was diagnosed with Lyme disease first, but that's what led me to the diagnosis of POTS, because I tried to treat my Lyme disease and actually landed in the hospital with like a GI bleed because I was sick from the antibiotic from like the mast cell and stuff. And so I think that... that just sparked everything from the POTS, so it's hard to know like, which piece is which. [Laughter]

00:10:25 Jill (Host): Yeah, so if I have this correct, you have chronic Lyme disease, which means that you might have some bit of nasty tick-something still in you that makes your immune system really angry. And that can trigger Mast Cell Activation Syndrome in some people, right? That's the thinking...?

00:10:45 Madison (Guest): Yeah.

00:10:45 Jill (Host): ...which can then also roll into POTS?

00:10:50 Madison (Guest): Yes, it can roll into POTS for anybody, really. Like if that occurs and I already had it. So I didn't know at the time, but I already had dysautonomia and I already had POTS, so it kind of just exacerbated everything.

00:11:07 Jill (Host): So I'm really sorry this happened to you. That is a nasty trio of things. Can I ask, so... at your very worst, what did a day look like for you? What were your symptoms?

00:11:21 Madison (Guest): Yeah, I think that - to go off of like the worst days - I think I've had a couple and I think that, you know, definitely the first time that I got sick and wasn't able to walk, that was really hard because I... felt stuck, I think. I think that like the days look just kind of dark and gloomy and I... it was in 2020 I... I had lost my ability to walk for seven months with a flare, and I think in the worst times, my days just pretty much looked like surviving. Like today, I'm just going to survive and that's what I'm going to do.

00:12:03 Jill (Host): What did you do to make it through the day then?

00:12:06 Madison (Guest): Yeah, I umm... did some Legos during that time. I did a lot of art. Art was kind of my healing process. I did it every day, no matter what kind of art – coloring, painting. I just think that that truly allowed me to express what was going on inside.

00:12:31 Jill (Host): Did your art have any themes to it like?

00:12:34 Madison (Guest): Oh yeah. [Laughter] Definitely add some themes to it. At some point, you know, it's funny 'cause it started off with like very basic coloring with quotes and positive quotes everywhere. And then it went to just, you know, abstract freehand. I'm just gonna do this. And just kind of brought out like the emotions... you could totally see some of the emotions each day that I was doing art.

00:13:07 Jill (Host): Do you feel like that took you on a journey? Do you feel like you ended in a different place than you started, because of that art?

00:13:16 Madison (Guest): Yeah, I did. I got really lucky and was able to go to a program that kind of helped heal my mind-body connection, and what they do is they use art and writing therapy. And before that, like I was already doing all this art, and so going into that program and doing all this art for me... like I think that that's where I learned like that was just... that was therapeutic, that that art was therapeutic the whole time.

00:13:50 Jill (Host): Neat! Would anybody benefit from this or do you have to have some artistic skill to do it?

00:13:56 Madison (Guest): No, I think anybody would benefit from it. The program, unfortunately, that I went to is in California and doesn't accept out-of-state patients anymore. It was just like during COVID. Yet I'm using kind of my knowledge of what I experienced through them, and using it with what I'm doing in school... is becoming a health and life coach so that I can put those two together.

00:14:25 Jill (Host): Very cool. Should we talk about that now or - no sorry, I'm gonna make a note. I want to talk about that, but first, I guess, we were sort of at the point where you were on your worst days you couldn't walk for seven months. Was that because you were too fatigued, too dizzy, or...?

00:14:42 Madison (Guest): So I neurologically lost my ability to walk. Everything was coming out normal. I got an EMG in my leg, everything was normal with my nerves and then was diagnosed - but not put in my charts - with like functional movement disorder. [Laughter]

00:15:07 Jill (Host): Meaning that they thought it was all in your head, is that what functional movement disorder means?

00:15:13 Madison (Guest): So the reason... lucky enough, the reason they didn't put in my chart like that they thought that that's something that's going on was because it was a dysautonomia doctor because he thinks that it is going on along with everything else. Which is controversial and I don't really think that way because they think that it's more the dysautonomia, which I now understand... that it's just more of the undiagnosed form of dysautonomia that I have.

00:15:45 Jill (Host): Can you walk now?

00:15:47 Madison (Guest): Yes, I can.

00:15:49 Jill (Host): So how did you get from in bed seven months to being able to walk now?

00:15:54 Madison (Guest): The program helped me a lot. The healing of writing letters, doing painting regarding, you know, healing. And as well as physical therapy and working my butt off to just keep going. And I think that the biggest thing was, I chose myself. I chose to live instead of just let it destroy my life.

00:16:26 Jill (Host): Did it come back very very gradually or did you have breakthroughs? How did it come back?

00:16:31 Madison (Guest): It came back really slowly and gradually. Seven months was a long time. I had never been able to not walk that long before. It was normally a couple weeks, and then I would be out of it. And over time, it was more just I... I just had to get up and do it. The more that I did it, the more that I did normal things and surrounded myself with normal daily life instead of just sitting in my bed trying to figure out what am I gonna do with my life, helped tremendously.

00:17:06 Jill (Host): Interesting, yeah. I can see how that would be so hard. So, after having been in bed for seven months and not being able to walk, what is it like when you walk now? I mean, do you forget about it pretty quickly or are you like, “Oh my gosh, I'm walking. It's this great to be up again?”

00:17:26 Madison (Guest): Definitely something I don't forget about. Any time that I'm able to go and walk for long periods of times, or anything, I'm like, I think about it and I'm like, “Oh my gosh,” like how did I get back to this point? 'Cause I was at a point where I didn't think it was going to happen. 'Cause I had no idea like what was going on.

00:17:54 Jill (Host): How long can you walk now?

00:17:56 Madison (Guest): It varies for sure. But I would say short distances, so like my max is probably up to like 20 minutes and then I get fatigued. But I can stand for longer periods of time. I do work at a school, so I do have to be standing, but it... it's part time, so I use that as kind of my like. Exercise, too.

00:18:26 Jill (Host): That's great, so how functional would you say you are now compared to before?

00:18:32 Madison (Guest): You know, I would say I'm... I'm over halfway there, is what I would say. Considering that I was a rock climber and a gymnast, you know, I think that my goal is to be able to do rock climbing and do yoga and... extensively and everything. So I think that I'm happy where I am and grateful. Yet I also think that there's goals that I want to achieve, too.

00:19:03 Jill (Host): So can I ask you about something you said just a little bit ago? You had said one thing that helped you in your recovery to become able to walk again was choosing to live. Was that always a given or was that not always a given for you?

00:19:21 Madison (Guest): Yeah, no, that was not always a given. There was times that were really difficult. There was times where, you know, I mean, I didn't know what was going on. I had just gotten diagnosed. Everybody I knew like went to college and I was kind of just lost, and I think that like in the moments when I couldn't walk and stuff like that, I just felt like, “What else is there?” It's super difficult to be in that dark place because you get stuck in the cycle.

00:19:54 Jill (Host): Can you talk more about that? That resonates with me and I do suspect it resonates with some of our listeners.

00:20:01 Madison (Guest): Yeah, yeah, absolutely. I mean, I think that when you have POTS and dysautonomia, like anxiety and depression like come along with it because we live - and we have to live - moment by moment, day by day, and it's hard sometimes because you wake up and you never know how you're going to feel. And that adjustment is really hard and sometimes I just was like... I would wake up and just feel like, I can't do this. I don't know how. I don't know how to get through. I didn't have friends. I lost a lot of friends from just them not being able to handle like what I was going through, which is... it's not even a shaming thing. Like, I... I feel for them because it's a huge thing to just kind of be open about.

00:20:55 Jill (Host): Wow, yeah. So do you remember what went through your mind at that moment - in that moment where you're like, “ahh... I don't know” - do you remember what got you to the point of, “I'm... I'm gonna make it through the day”?

00:21:11 Madison (Guest): Yeah, yeah... I mean, truly, I remember that I was just like, I can't live like this anymore. Something needs to change. Like there needs to be a change in I... I'm like a very full-of-life person... like before my POTS and everything like that... and I think when I got diagnosed, like that just kind of went away and, you know, I think what I was feeling then is just lonely, afraid, I didn't know where to go, and I knew something needed to change.

00:21:53 Jill (Host): Is there anything you would tell that version of Madison if today's Madison could like magically send a message?

00:22:01 Madison (Guest): I think that if I could say anything to that Madison - and everybody else that's going through what I have gone through - it's simply that the mind and body is so connected. And I didn't really believe that because I didn't really understand it, and I think that once I was able to kind of connect my like physical sensations in my body with like how I was feeling as well, like that... that was huge for me, and I wish I like learned how to do that prior to that.

00:22:42 Jill (Host): Is there anything else you wish you had known sooner about living with POTS?

00:22:47 Madison (Guest): You know, I mean, it's I think a journey for all of us that live with it and there could be so many different things that I could say that I wish I knew, but I think that the most important thing was that and... never giving up. Like, truly I... I just... I feel for like my past Madison and I feel for the people that I work with in support groups and stuff like that... that go through it, and I just, you know, I feel for them and just never to give up.

00:23:27 Jill (Host): So can you tell us more about the support groups that you run?

00:23:30 Madison (Guest): Yeah, so I actually have been running support groups throughout COVID for Dysautonomia International...

00:23:35 Jill (Host): Very cool.

00:23:36 Madison (Guest): ...in Illinois, and I've been really enjoying it. I struggled at first because a lot of the support groups and a lot of the Facebook groups tended to bring me down actually... and kind of like stay in that like yucky place. And one day I was like, “I think I want to run them,” because I think that like, we need more positivity in the POTS community. And that's just kind of my role, like in the Illinois community at the moment. So, I... I'm loving it.

00:24:13 Jill (Host): So how do you bring positivity to a support group?

00:24:16 Madison (Guest): Yeah, so the program that I went through to like help me reconnect like with my mind and body focused a lot on living in health rather than living in illness. And that's hard... like I thought when I started that program like, “how is that possible? Like I have a chronic illness - how is that ever possible?” But it actually is.

00:24:40 Jill (Host): So what does that mean?

00:24:41 Madison (Guest): Yes, and so, this is what I bring to the group, and I bring, “what is going well, in your life?” And starting it there and then acknowledging the hardships - acknowledging everything that's going on - yet staying in the dark and yucky spots is like unhealthy for our body because we're just gonna continue to live in it. And that's what I experienced. So that's how I bring it into the support groups.

00:25:14 Jill (Host): So do you mean that basically everybody’s life has a bunch of parts to it - some going more well, some going less well - and if you kind of inhabit the parts that are going more well... that that's a healthier way to live? Is that sort of what it means?

00:25:28 Madison (Guest): Yeah, kind of and I can give you an example. Like, I remember one time I was running a support group and this lady - so sweet - she was just, you know, really struggling with her health and I said, “Well, what's something like not related to your health that's going well?” And she was like, “Oh my gosh, like, I haven't really ever thought about it that way.” And like she was so like taken aback and she was like, thank you for like saying that because we live in our like illness for so long. And we don't realize - and I didn't realize for so long and... it took me till last year to figure it out so...

00:26:13 Jill (Host): That's great, and that reminds me a little bit of something I've heard other people say about anything bad in your life, whether it's losing a loved one, is that one strategy is not to try to necessarily fix what's wrong, it's just to add more pieces of your life that are uplifting so that the part that's not going so great doesn't dominate everything. And that sounds really smart.

00:26:39 Madison (Guest): Yeah, and that truly for me was the best medicine, I think.

00:26:46 Jill (Host): So now that you have more options about what you can do all day - like you're not stuck in bed - what are your favorite activities?

00:26:53 Madison (Guest): Yeah, so living in Chicago - it’s a little chilly at the moment - but I love being outside when it's warm and I love being in nature, fishing. I mean fishing I did when I couldn't walk either. My dad would pull me in my wheelchair and go over the hills and everything and we would go fishing and that's just something that I've just continued to do. It's just peaceful, and... other than that, I do yoga and meditation now that I can move my body a little bit more, but not pushing it too much.

00:27:29 Jill (Host): What is the best way that people can support you these days?

00:27:33 Madison (Guest): I think that just... giving me time to acclimate to any change. I think that somebody with POTS constantly has changes... [Laughter] ...in their life. I think to be best supported is to just show compassion and to not say that you fully understand because we're all our own people, right? So even me and you or somebody else with POTS - like we're so different, so we don't understand necessarily. So I think that's what I would say.

00:28:13 Jill (Host): Yeah, so I interviewed a patient a couple weeks ago who is doing a research project about emotional intelligence in POTS patients because one of her doctors - I think at the Mayo Clinic - had said to her, “how come all the POTS patients are highly emotionally intelligent?” And I was just curious, since you run support groups it sounds like... does that fit with what you see or...?

00:28:42 Madison (Guest): Yes. Oh my gosh, that's amazing, and I think that running support groups and figuring out my journey with POTS and just understanding like emotional intelligence is a huge piece of it.

00:29:00 Jill (Host): OK, slight change in topic. Do you have any things that you must do every day or every week to stay feeling better?

00:29:08 Madison (Guest): Yeah, I mean, I do take my daily medication. You know, I drink as much water as I can. Salt... I salt my food... it’s the best way for me to get my salt intake. And really focusing on that and my breathing has been 100% something that I didn't really know that I needed to like practice doing - 'cause that sounds weird, 'cause we breathe every day but - I noticed that like I held my breath a lot, just from like the tension so...

00:29:42 Jill (Host): Interesting. Has anything positive at all come from your having all this. Is there any silver lining at all?

00:29:50 Madison (Guest): Yeah, I think there's a lot. I think there's a lot of silver lining. As much as, you know, I've been through and went through and go through every day, it's given me, you know, a purpose to help other people, to share my experience, and to kind of just like have the push to be myself and not be like anybody that like... who wants me to be that person... like I just want to be me.

00:30:21 Jill (Host): That's great. Do you think that this whole experience has changed your personality very much. Like, do you think you are on track to be somebody else?

00:30:28 Madison (Guest): Yeah, I think it's changed my personality quite a bit. I think that, you know - just looking back from high school even - like I think just my mindset is so different.

00:30:38 Jill (Host): Do you feel like you're much stronger now? Like, it seems to me that if being in bed unable to walk for seven months didn't get you, that not a lot could get you. Do you, kind of, like feel at this point that you're like...

00:30:51 Madison (Guest): Yeah, yeah. I mean...

00:30:52 Jill (Host): ...a little bit invincible?

00:30:54 Madison (Guest): Yeah, exactly. I feel like it definitely depends on like the environment. And I think that that's all where it comes down to is... like I've been surrounding myself around healthy environments and I think that that's really helped the strong feeling in my like mind as well.

00:31:13 Jill (Host): Um hm. Do you just know a healthy environment when you see it, or do you have any like parameters where you sort of are like - this is a healthy environment that I will seek out and this is something I would stay away from and...?

00:31:27 Madison (Guest): Yeah no, I actually... no, the answer is no. You don't see it, at first. I think that having experience with jobs and a little bit of discrimination with jobs and like my POTS and everything, I think that that just... that gave me the lesson to like – what I do want to be around, and what kind of people I do want to be around, and I'm slowly finding those people as I go through these learning processes. Now, is that easy? No, because sometimes I'm like - well, this is really, really not fun.

00:32:04 Jill (Host): Yeah, yeah, it's so interesting... it's so interesting and I guess just a constant quest to find what works best. Are you up for a speed round where we make your poor oxygen starved brain say the first thing that comes to mind?

00:32:19 Madison (Guest): Sure. [Laughter]

00:32:20 Jill (Host): What is your favorite way to get salt?

00:32:23 Madison (Guest): I put salt on everything.

00:32:25 Jill (Host): What is the drink that you find the most hydrating?

00:32:29 Madison (Guest): I just drink water or ice water.

00:32:32 Jill (Host): What is your favorite time of day and why?

00:32:36 Madison (Guest): My favorite time of day is probably from like 11:30 to like 4:00 o'clock, 'cause that's when I feel my best.

00:32:46 Jill (Host): Nice. Where is your favorite place to spend time?

00:32:50 Madison (Guest): Outside.

00:32:51 Jill (Host): How many doctors have you seen for POTS and related conditions?

00:32:56 Madison (Guest): Honestly, I'm not exactly sure. I've seen a lot. I really don't know. I mean, it's probably around eight.

00:33:03 Jill (Host): What is one word that describes what it's like living with a chronic illness?

00:33:09 Madison (Guest): Changing.

00:33:12 Jill (Host): Hmm. What is some good advice that anyone ever gave you about anything?

00:33:17 Madison (Guest): I think the best advice was when I was in the program and the therapist just... she was just so real with me and just really felt for me, and said, you know, like she was kind of the one that was like, you live with it or you don't and, you know, I think that that was truly so helpful for me because it pushed me to be like - no, I'm going to do this.

00:33:48 Jill (Host): That's great. What is something small or inexpensive that brings you comfort or joy?

00:33:55 Madison (Guest): I have my bunny.

00:33:57 Jill (Host): A live bunny?

00:33:58 Madison (Guest): Yes. [Laughter]

00:34:01 Jill (Host): Oh... very cool. What is your bunny’s name?

00:34:03 Madison (Guest): Magnolia.

00:34:04 Jill (Host): Oh beautiful. Who is somebody that you admire?

00:34:07 Madison (Guest): I would go out and say that I admire the therapist that helped me.

00:34:14 Jill (Host): What is something you're really proud of?

00:34:17 Madison (Guest): Proud of my progress 'cause I mean, today - exactly two years ago today - I was in the ER, so... I think that, you know, this progress is just... just huge.

00:34:32 Jill (Host): That's good for all of us to remember. I know sometimes I feel like when things are bad, they can feel so bad and it can be so hard to remember that things can get good again.

00:34:43 Madison (Guest): Yes... yeah, and I feel like that was the hardest piece... is like when I was in those hard times like I forgot that like things will get better, and I do forget that. Yet, I have reminders pretty much all around me and that's like what's been helpful.

00:35:01 Jill (Host): What is an activity you can enjoy even when you're feeling really POTS-y?

00:35:06 Madison (Guest): Watching Netflix has been something that I can do when I'm feeling really POTS-y, and that could be with somebody or not with somebody which is really nice, and I would suggest to watch something more uplifting.

00:35:23 Jill (Host): Yes! Do you have any favorite show?

00:35:27 Madison (Guest): I don't know... this is kind of funny, but I just watched this show called Impostors and it was just a really funny, good show. It's about con artists and just kind of goofy, not thinking about anything.

00:35:42 Jill (Host): Ooo good. OK, I'm making a note because I like things that don't get my adrenaline up, which means husband and I have zero overlap in what we like to watch.

00:35:57 Madison (Guest): Yes.

00:35:58 Jill (Host): What is a gift that you would have sent to every POTS patient in the whole world if you had infinite funds?

00:36:02 Madison (Guest): Oh my gosh. I would probably send a little care package of compression socks, a journal, pen, and a candle... is kind of what I would think.

00:36:18 Jill (Host): Very nice. What is something you are grateful for?

00:36:22 Madison (Guest): I'm grateful for my family and where I'm at today.

00:36:27 Jill (Host): Have you ever had to sit down or lie down in a weird place because of POTS, and if so, where was it?

00:36:34 Madison (Guest): Yes, many places. There's been so many places, but one of the main places that constantly happens is Target. I have to sit down, and my mom will be walking with me and in one minute I'll be like way behind and she'll be like, “well, where did she go?” Well, I sat down in an aisle... [Laughter] ...definitely. And I've laid down many, many places.

00:36:59 Jill (Host): I almost wonder if places like Target are a little bit more POTS aware than other places because I've heard a number of patients mention Target. [Laughter] And so...

00:37:09 Madison (Guest): Yeah, it's... it’s the lighting. The fluorescent lights are terrible.

00:37:12 Jill (Host): Ohh right. OK, well I just have a couple more questions. What do you wish more people knew about POTS?

00:37:20 Madison (Guest): It's not all in our head and I think that that is not said enough and - as much as it is said - it's not enough 'cause I think there's still a little bit of that stigma.

00:37:33 Jill (Host): Is there anything you'd like to say to your fellow POTS patients who might be listening?

00:37:38 Madison (Guest): Yeah, I mean I truly like... I said before I think that to never give up and just to keep pushing through. And, you know, don't ever think that like the doctors or anybody around you knows you better because you know you best.

00:37:59 Jill (Host): I wish I heard those words like 20 years ago. Umm... and my last question, why did you agree to let us share your story today?

00:38:08 Madison (Guest): I just think the new and improved Madison is coming out of her shell... and sharing my story and my experience so that others like don't feel alone like I did.

00:38:21 Jill (Host): Well, that's beautiful. Thank you so much for sharing your story and for yeah... letting us hear all the really horrible, real parts because I think it does help us all to know what's possible. So we really appreciate it and we just wish you the best going forward. And hey listeners, thank you for listening. Remember, you're not alone and please join us again soon.

00:38:49 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.thePOTScast.com. 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]