Kristy’s Wild Ride

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Jill Brook: Hello, fellow POTS patients and tremendous people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Kristy. Kristy, thank you so much for joining us today.

Kristy: Hi, you're welcome.

Jill Brook: So, I think that I may have pursued you to come be on POTS Diaries because you have a very special story of something that you made happen, despite the POTS, and I don't want to give away too much too soon. But we'll get to that in a second, but first of all, can you maybe just set the stage for people and give people some basics about you so that they kind of know where you are, what to imagine?

Kristy: Yeah, so I was diagnosed with POTS back in about 2012 2013. And looking back, I, we now think that I've had it since I was about 13 years old. So it's been several, several, several years now. And I did the, [00:01:00] you know, I got lucky because I got in with a doctor right away that has seen POTS. I know a lot of patients, they take years and numerous doctors before they're diagnosed.

But I ended up getting really lucky. He already has seen POTS, so he suspected that. Had me do a tilt table test, and I failed or passed out, however you want to look at it. I passed out during the test. And been treating it and dealing with it ever since.

Jill Brook: And how would your friends or family describe your personality?

Kristy: I would say outgoing, stubborn for sure. I kind of had the attitude of, tell me no, and I'll show you a reason, yes I can. So you tell me I can't do something, I'm gonna prove you wrong. And I'm, I'm outdoorsy, I'm active, I'm fun, so that's, [00:02:00] that's kind of me in a nutshell I would say.

Jill Brook: Before we started recording, you were saying something, and a lot of times I ask people what did your life look like before POTS, what did you enjoy doing before POTS, and I want to hear that from you, but I also want to hear what you said in response to that, because I think your response was sort of like, you refused to

give up what you love, but talk about that more.

Kristy: Yeah, so before I got diagnosed I was an equestrian, so I was really active. I did horse, I rode horses. for about six to seven horses every day, six days a week. And then got diagnosed with POTS and basically had to cut all of that out and I lost all my physical ability. And I kind of go at life with the attitude of, you know, my doctor he told me that POTS is something that I will always have to deal with.

Will never [00:03:00] go away. I'll have good days, I'll have bad days, but it's always going to be there. And I kind of went in with the attitude of I can either live my life how I want, enjoy life, and still deal with the POTS, or I can not enjoy my life, not do the things I want to, and still have to deal with POTS.

And I choose to do what I want to. I want to still enjoy my life, still do my goals, still live my life how I've always dreamed.

Jill Brook: So before we get into sort of your epic adventure, can you talk to us about what your POTS looked like at its worst? What were your symptoms? What was your functionality or lack of?

Kristy: At its worst, I struggled to get out of bed. My distance of walking was basically from my bed to my couch and by the time I reached my [00:04:00] couch I was breathing like I had just run a marathon. So anytime I went out I had to use a wheelchair. It was, I couldn't, I couldn't go walking around the grocery store.

I couldn't go, I definitely couldn't ride horses. I couldn't even really go to the barn anymore. And yeah, I was, I was bed bound essentially. And I hated it. When you go from being extremely active and doing all kinds of things and peak fitness to practically overnight not being able to walk or stand up.

I mean, that's it's life changing.

Jill Brook: Is that when you decided that you were gonna take on some big challenge or, or I guess talk us through how you got from wheelchair bound to, I [00:05:00] don't know, should we give away what you did? Want to tell people what you did?

Kristy: So, so I, I kind of, you know, talking to my doctor, I was like, look, what can I do to get better? He said, you have to exercise. You have to. And I'm like, well, how do I exercise when I can't even get out of bed? And so he gave me some exercises that I could do in bed or just sitting like, on the edge of the bed.

And then, so I was doing those type of exercises. And then, you know, I started working on trying to walk further and further distances. But I realized that if I was sitting, I was okay. If I was lying down, I was definitely okay. It was just when I was standing and walking and, God forbid, if I tried running that I would have the issues arise.

But then I [00:06:00] decided, you know what, what if I do cycling? So at first I started with in a gym. Getting on the bicycle, you know, and, and cycling there. First, I started about five minutes, and then I kind of gradually went up, and then I told my husband, I was like, you know, I want to get a bicycle, and I'll start riding around the neighborhood, and so we did.

Went to the store, got a bicycle, I started riding around, and kind of, again, gradually building up and I started noticing that my fitness was getting a little, my, my stamina fitness was getting a little bit better I, I still had to use a wheelchair, but not to the extent that I was. If I knew that I was just doing like a really quick run in, run out type of thing, then I wouldn't have to use it but if I was doing like a big grocery shop or if we were going to some vet or something like that, then I [00:07:00] would take it.

And then, when I started really enjoying the cycling, you know, my husband, he kind of joked. He was like, oh, you're not going to become some racer now, or anything like that. And I'm like, no, no, no, I'm just into it for just to get fit again. Well, then I caught word of a particular race. And, I, when, when, when I set a goal for something, I set a big goal.

I, I dive in head first.

Jill Brook: Wait, wait, let's just let the listeners guess. Okay, listeners, go ahead. Just take a guess how far Kristy biked and just stick that in your head. Okay, now tell them.

Kristy: So, I set a goal for I'm doing this bicycle race. It, it, is, it starts in Tennessee and it ends in another state. I'll just say that.

Jill Brook: Was 450 miles the actual race?

Kristy: Yes, yes.

Jill Brook: [00:08:00] And you didn't just pick one of those go the distance things, it was like actually a race where you were determined to try to go fast?

Kristy: Yeah, it was a, it was an actual race, and there was another female racer that I knew was paired up pretty well to my pace from looking at her previous track records. And and so I set out a goal. I want to beat her. If I beat her, I, I'm, I've done great. And I accomplished that. I finished 450 miles in only 32 hours, I believe.

So it was a straight through. It starts in Tennessee and ends in Mississippi. It was the entire Natchez Trace.

Jill Brook: And,

did you say that you, you stopped and took a 45 minute nap at one point? Is that what I recall?

Kristy: Yeah, about 3 o'clock in the morning, I took a 45 minute nap. It was originally supposed to be a 90 minute nap but my friend who is [00:09:00] also he's a Ironman athlete, if anybody knows what that is, and also a retired Marine, he he was like, so, we're going to give you 45 minutes. I was like, wait, what?

Yeah, you

only get 45 minutes, and then you're going to get back on the bike and you can continue. He was like, you want to beat the other girl? You gotta only ride for 45 minutes. You do 90, he'll never catch her. I was like, okay, well, I'm sleeping for 45 minutes. So, in 32 hours, I slept for 45 minutes.

Jill Brook: Okay, so many questions. So many questions. I'll start in the beginning. How long, how much time passed between the time that you were using a wheelchair and kind of bed bound before that moment that you said that you started to like cycling? Maybe you weren't like ready to race, but you actually enjoyed it.

Kristy: The racing idea actually happened within about two months. It happened pretty quick.

Jill Brook: What, what state were [00:10:00] you in when you made up your mind to do the race? Were you still in bed or were you pretty functional by then?

Kristy: I was starting to improve. I was kind of at the point where I wasn't having to use a wheelchair as much. And it was and I wasn't, I wasn't getting as winded at walking in my own home. Because also during this time I also was working on being able to walk around my block and everything. And, you know, I was able to walk around my block a couple of times.

And so, yeah, by this point my wheelchair had become only if we were doing something like the State Fair, or if we were going to a horse show, or something that would really, I'm on my feet for several hours at that point.

Jill Brook: And to be clear, we're not recommending that people do this, right? Your own doctor even said you were kind [00:11:00] of...

Kristy: He was a little bit, he was like, you're a little bit insane.

He was, okay, so, yeah, I don't want anybody to think, oh yeah, she did it, I can go do it. Most definitely not. My doctor, he, at first, he really wasn't too happy about it, when he heard my plan. I'll be honest with that, he was not, he wasn't happy that I was out on the road riding a bicycle, or anything else.

But then he started to notice the improvements. And I wasn't having, my symptoms were going down. I wasn't having as many episodes. Because when I have an episode, I am one where I fully pass out.

Jill Brook: Even still?

Kristy: Yes. Well, no, not still, because I get a lot of warning beforehand. And so, I sit down before that point hits, but if I didn't, yes, I would still pass out.

Jill Brook: So he was probably worried about you getting dehydrated, [00:12:00] maybe even passing out on the bike.

Kristy: He, he was. Well, no, not so much on the bike, because he asked me, he was like, Hey, you know, do you ever have symptoms while you're on the bike? And I said actually, no. Surprisingly I very rarely ever did. My symptoms would arise once I got off of the bike. But when I was on the bike, I didn't really, I kinda, I tweaked my bike to where I could lower my upper body down to more of a flat level.

Jill Brook: Oh.

Kristy: I think that helped.

Jill Brook: So you basically made it so that you were less upright.

Kristy: Yes.

Jill Brook: So your brain could probably get more blood.

Kristy: Yes. It took less effort for my body to pump the blood up. And also, you know, you're working your legs so the blood doesn't have a chance to pool down your legs. It's constantly working up. And during my [00:13:00] race I was wearing my compression stockings and constantly eating, constantly drinking electrolytes and fluids.

Jill Brook: And people are probably wanting to know, what exactly did you drink?

Kristy: During that race, it was a sports powder called Tailwind. I used an unflavored version, because that's one thing I don't like. I don't like real sweetness. It's just a powder that you mix into your water, and it's lower calorie, but it has good carbs, good electrolytes with high sodium content and everything and lower sugar content as well. And no caffeine. There's no caffeine in it.

Jill Brook: Oh, wow. So you did this whole 30 some hours with no caffeine?

Kristy: No

caffeine. No caffeine. So, there was a joke going on while I was doing the bicycle race. I'm a, I'm a Coca Cola fiend. [00:14:00] I love Coca Cola. I don't start my mornings till I have a can of Coke. It's like my coffee for the day. And all during the race my, support crew was waving a can of Coke out the window like, come and get it!

Because the reward was at the end if I finished then I got a can of Coke.

Jill Brook: But not during. Okay. So now I'm just wondering if you can kind of almost like walk us through the timeline of the race. And I'm, what I'm looking for is, for example, like, you know, maybe like hours one to three feeling good, hour four, whatever sets it, like, can you kind of just give us a quick summary of what that 30 some hours felt like.

Kristy: Yeah, so at the start, I don't know the exact time, hour, frame. But at the start, you know, I was talking, I talked to myself a lot during the [00:15:00] race. Because you have a lot of time to yourself and to think. So, I'm talking to myself like, okay, you know, you can do this, you can do this, you got this, this is easy.

You know, you've already ridden this first hundred miles, it's no problem. Because I had test ridden a portion of it before the race. And and then, you know, about, I'd say, three hours in or so, I started thinking, you're crazy for doing this. Like, can you really do this? And I'm like, yes, I can. I've done the training.

I can do it. You know, I, nobody's going to tell me I can't do it. And then, somewhere around the middle nightfall came, and I started getting really tired, and my my crew was, because I had a support vehicle all the way who was following me. And he's telling me like, Oh, your break is going to [00:16:00] come shortly.

This was about, it was, it was dark. It was about midnight or so and would be my best guess. And he's like, Oh, your, your, your break is coming up. I got a spot picked out. I'm like, Okay, okay. Getting tired, still going, I'm like, how much further, till my break? And he's like, just 5 more miles, I've got a spot picked out.

I'm like, alright, alright, so I'm riding a lot. Getting tired, more and more tired. It felt like the, the trees were coming down on to me. Cause you start getting delirious. And, you start seeing stuff. And I'm like, look, I, I gotta pull over now and I gotta take, I gotta get my, my time. Okay, fine.

So, we pull over and he's like, yeah, you're not getting 90 minutes, you're getting 45. I'm like, what? So, took a nap for 45 minutes. Luckily, I'm somebody I can sleep anywhere, anytime. No problem. Second my head hits a pillow, [00:17:00] I'm out. So, I got every bit of that 45 minutes. And, got back on after that. Started riding, the sun started coming up, and I started getting discouraged.

I was like, man, this is like, I really can't do this. This is just a slog. And then I saw the racer pass me that I wanted to beat. And I was, that really kicked my rear into gear. And I ended up passing her. That was kind of comical. Because when I passed her, I was telling myself, oh you gotta look strong, you have to tell yourself, you know, you have to act like you're fine, you could go another thousand miles, doesn't matter, you're doing great, even though I could, I was, I had such saddle sores

in my, in my rear, that I was sitting on the nose of my saddle of my [00:18:00] seat. I was exhausted. I had lost feeling of my toes. It was, it was, it was bad. That's why I don't suggest this for anybody. Nobody has to go to this extreme. But but yeah, I ended up doing it. Finishing it at about 9 o'clock in the evening.

Jill Brook: So at that, so, I mean, you, you've kind of gone over a lot of, of hours here. So the sun came up, you passed your competitor, but you still had like another 12 hours to go or more.

Kristy: Yeah, yeah, and, and I beat her. So, so I was happy. It was a win win all the way around. I set out to accomplish a goal. I did that goal. I proved everybody wrong cause even closest people to me, they were like, yeah, that's never going to happen. Well, I did it.

Jill Brook: You sure did.

Kristy: And, and as a result, it got me back on the horses.

So, since then I've stopped, I've stopped [00:19:00] the cycling and now I'm riding horses again, which is my true passion.

Jill Brook: Wow. And they probably now sound, feel very comfortable by comparison

to the bike seat.

Kristy: Yeah, yeah, it is.

Jill Brook: Now, did you have a gigantic crash after finishing this? Like a POTS crash? Or how were you for the few days afterwards?

Kristy: You know, right after, I think I was like on so much adrenaline of the race that it actually took me probably about two days before it kind of hit me. And when it did it hit pretty hard. I had about three days that I struggled. I really did. I, I wasn't to the point that I was at the start, but but there was no going to the grocery store.

It was stay at home with my feet up. Rest, really [00:20:00] rehydrate, and get myself bouncing back.

Jill Brook: Wow. And what did you think about for that last day as you were spending that, you know, until 9pm? What went through your head as you were killing all that time on the bike?

Kristy: There was a lot of doubt of like, am I really going to be able to finish this? And then there was, it was very much a roller coaster. There was, extreme doubt to an extreme high of, I got this in the bag, you know, and then, and then like an hour later it would hit me again, like, I can't do this, I can't do this but I put a lot of I got a lot of determination.

Jill Brook: You do.

Kristy: Like I said before, if somebody tells me I can't do something, I'm gonna go show, hey, I can. And also, my hope in doing this also was to [00:21:00] kind of show other POTS patients that you can still do stuff. You don't have to go to the extreme that I did, you know, but you can still accomplish things. You know, you don't have to be like, well, okay, well that's it, you know.

Jill Brook: Yeah.

Kristy: If. I can go from being stuck in a wheelchair to riding 450 miles, you know, it's possible for anybody to be able to live a good happy life and accomplish their goals, whatever they are.

Jill Brook: So you have no regrets?

Kristy: None.

Jill Brook: Glad you did it?

Kristy: Oh yeah, I am.

Jill Brook: Did you ever meet the competitor? Does she know that she played that important role for you?

Kristy: We did. We met up the day after the race and it's funny because I didn't know this at the start, but she was looking out to try to beat [00:22:00] me. So we were, we were truly competing against each other. We were constantly passing each other In the race, except for in the last six hours or so we were constantly passing each other.

It was, it was good, friendly competition and and we're friends now, so.

Jill Brook: Boy, you are so mentally tough. I have done a few what I would consider long endurance things, but we're talking like six hours, four hours and that seemed like so long to me.

Kristy: Well, that's

good too! You know, I mean, to do that, that's good as well. You know, everybody has their own, their own limits. You know, and, and, to do an hour, to do 30 minutes, you know, to do 4 hours, 6 hours, 8 hours, it doesn't matter. If that's, if that's what you can do, [00:23:00] then that's great, do it. If, you know, or if that's all you want to do, great, then do it.

Jill Brook: No, no, but that, that it is something though to keep yourself mentally occupied for 30 some hours. Now I have to admit that I, I did a marathon once before my POTS got too bad. My POTS was sort of medium bad and I was doing it on the slow side. And in the last hour, I was just calling people, asking them to talk to me because I was so bored.

Kristy: Yeah.

Jill Brook: I just didn't have the mental toughness to keep myself occupied. And so, so I have a lot of respect for that.

Kristy: Well, I had my crew also that was talking to me through a walkie talkie in my ear. So, we were, they were joking and stuff. We were, we were conversing with each other and everything else throughout the race as well. So, it wasn't just me in my head. That would

drive me insane.

Jill Brook: So tell us more about [00:24:00] getting back to some of the things that you enjoy since that time. You mentioned horseback riding. Can you horseback ride? Are you doing the same stuff you used to do? The stuff you enjoy? What are your limitations or non limitations like now?

Kristy: Yeah. So, I don't think I could ride six horses a day anymore or maybe I could, I don't know. But, now I'm just riding once or twice a week and it's kind of nice, I'm able to join my daughter while, and we ride together and we and, and I definitely have had some days where I've been in the middle of a ride and I'm like, oh, nope, I'm done.

And I jumped right off of the horse and put the horse up and, you know, I've had that happen. But I'm lucky, I, like I said, I know my symptoms. I have a lot of warning before anything too bad happens. And but yeah, no, I enjoy what I'm doing. I'm [00:25:00] doing I'm no longer doing the jumping or anything like that but I'm doing something called mounted games, so it's kind of horse relay races, essentially, with objectives that you have to do.

Jill Brook: Neat.

Kristy: During your run. So, it's fun, exciting, it's fast paced and have a good time doing it.

Jill Brook: That's fantastic. What do you do that helps you manage your POTS the most? Like if you were going to give tips to other people.

Kristy: I listen to my body. I rest when my body's saying I need to rest. I'm not afraid to say, hey, I can't do this today. I drink lots and lots of fluids. I'm not a big Gatorade person or anything like that. I really enjoy Body Armor. That, that's kind of like my, my drink [00:26:00] where I get my electrolytes and stuff if I really need them.

I just try to eat healthy and, and stay active. That is the biggest thing. I notice as soon as I stop being as active, whether it's going for a walk around my neighborhood, or if it's playing catch with my daughter, or riding a horse, or going to the gym and doing a few weights or walking on a treadmill or something like that I notice big decline in my health.

So staying active, I think, is the biggest key. However you can, you know, like I said earlier, I started out with just kind of laying on my back in bed and doing a bicycle with my legs. [00:27:00] And then, you know, I also put weights on my ankles. Again, I'm still in bed and just kind of lifting my legs. It's just getting moving, you know, and so being active is the biggest thing and you have to kind of, there's a very fine line where you run of, you're active enough that you push the limit just a little bit, but not too much that you set yourself backwards.

Just enough that, so that the next time you go, you push yourself just a little bit further, and then a little bit further, and then eventually you're able to do whatever you want.

Jill Brook: Awesome. Yeah. And conversations like this always make me feel for the people who have the PEM, the the exercise, you know, intolerance where they really cannot. And, [00:28:00] and so I just want to let those people know, we, we know you guys are out there too, who can't do it.

Kristy: Yeah.

Jill Brook: So do you have any other goals you're working towards now that are new or different in, in the world of POTS? Or are you, are you sticking with what you enjoy now?

Kristy: I'm sticking with the horses now. I'm sticking with the horses now. That's my real passion. Cycling was never my real passion. It was kind of like a and, you know, there was actually a bigger race that I wanted to accomplish, but after I finished the race that I did, it, I kind of like came out of that race like, okay, I did what I set out to do, and I was just kind of, I was just kind of done.

I tried for a couple years to keep it up, I just, I didn't, I couldn't do it, so, I just lost interest, and I think, I think losing part of that interest was [00:29:00] because I was back to the horses, and that's where my real passion is. So, it's just spending the time with the horses, riding them when I can, and enjoying spending time with my daughter.

And, she's just starting to get into hiking. So, I'm like, well, maybe that's a goal. It's to be able to go, she wants to do this big hike in California. It's called the Bishop Trail or something like that, and it climbs over 2, 000 feet. And I'm like, oh.

Jill Brook: Well, especially with the cross country flight in there first. At least that's what would get me.

Kristy: So, oh my gosh, yes, flying for about 24 hours after flying, I, I struggle. My symptoms are definitely up here. But yeah, so she's getting into hiking now, so we're like, okay, well, let's go do some hiking.

Jill Brook: Well, that's awesome. Well, [00:30:00] we hope that goes great and I have no doubt that you'll make it go great, whatever it takes. So I just have a couple more questions. What do you wish more people understood about POTS?

Kristy: Two things. And this is more of, as far as like, the public, like, that just cause I look like I'm okay, like there's nothing wrong, there's a lot that's going on, you know, just cause I may look like I'm perfectly able bodied, I have those struggle days. and also that some days, you know, when I say I need rest, I really do need rest.

You know? Like, there are some days I just got to check out. And it's a struggle sometimes, you know? Like, even family, they're like, really? You know? But it's like, no, really. [00:31:00] I I'm tired.

Jill Brook: Well, does your biking experience build you credibility with your family so that when you say you're tired, they really do believe you. They're like, Oh, okay.

Kristy: Actually, I think it kind of made it worse in that sense because they're like, they kind of had the attitude of, oh, you did 450 miles on the bicycle, so you're all better now.

Jill Brook: Ah.

Kristy: It's like, no, I I have improved, but it is very much still there.

Jill Brook: Well, your willpower is amazing. Congratulations on completing that. Thanks for sharing the story with us. And it's been really fun to hear about it. I know everybody's wishing you well, especially with the horses and the hiking with your daughter.

Kristy: Thank you. It was, it was, I enjoyed doing this.

Jill Brook: Awesome. Okay. Well, you'll have to check back in a couple of years with us and let us know what else you're up [00:32:00] to. So thanks a million, Kristy.

Kristy: Yes, thank you very much.

Jill Brook: Happy trails. Okay. Listeners, we hope you enjoyed today's conversation. We'll be back again next week, but until then, thank you for listening, remember you're not alone and please join us again soon.