Episode Transcript
[00:00:00]
Jill Brook: Hello, fellow POTS patients, and beautiful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Karen. Karen, thank you so much for joining us today.
Karen: No worries. Thanks for having me.
Jill Brook: So for starters, what should we know about you as far as basics? Where are you? Who are you? How old are you?
Karen: Yeah. I am 36, turning 37 in June. I am in rural Waterloo, Ontario, Canada. And I work in the medical field and live at home with my husband and my big dog Jasper, who's a Shiloh Shepherd. And I think that's, I guess I was diagnosed with POTS in, I guess formally in 2022, but it actually started in 2021.
Jill Brook: Okay. All right. And before we get into all that POTS stuff how would your friends or family describe your personality?
Karen: Oh, oh. That's a tough question, I guess, [00:01:00] outgoing and direct and yeah, I guess kind of goofy at times.
Jill Brook: Okay. Right on. And what are your favorite things to do?
Karen: Well, it, it's changed a little bit with the diagnosis but I'm still thankfully able to do a lot of things that I like to do, just kind of modified. So, we love, I love to be outside and I really like to bike and camp and, yeah, I am snowboarding. We do a lot of outdoor stuff. Pretty active, although modified now, but...
Jill Brook: Okay, and you're in an office of some sort right now, and I think you've just worked a full day. Do you wanna tell us what you?
Karen: Yeah. I'm a nurse practitioner in a in. A community health center. Which is a if you're in Ontario, you might know what that is. If you're not, it probably sounds a little bit odd. It's a government funded clinic, so we're we're in like a more rural area. We sort of try to reach like farm families and things like that.
Jill Brook: Oh, [00:02:00] fantastic. Great. Okay, so can we go back to sort of like before POTS entered your life and when was that? And what were you up to? What did your life look like?
Karen: It was, yeah, my life was, I was married, we were really busy on the go. Did a lot of travel a lot of outdoor activities, really active. I, right before I was diagnosed, would've been a year and a half or so, I was actually attending nurse practitioner in a long-term care facility. And so things leading up to that diagnosis, my POTS came on after my third dose of the COVID vaccine.
Jill Brook: Like right after, or...
Karen: Really quickly after, I would say was it six days when I started having, but, and it's, it's interesting, like I work in the healthcare field, but as most people with POTS know, a lot of us know nothing about [00:03:00] POTS. It's not, we weren't taught about it really.
Or you might kind of hear it as this like weird rare thing. And so you would think I would've been able to figure out what was going on with me. But I had no idea. I thought I was just, I had no idea what was happening to my body. And yeah, so, and I, I tolerated the first two vaccinations just fine.
So not really, we don't really know why. So under really that year leading up, my mom was kind of, was diagnosed with a very rare form of cancer. And so in the, in sort of, she passed away in September of 2021, and then I got the third dose in November, and then the POTS symptoms kind of came upon me outta nowhere.
But it took probably a year and a half before I was diagnosed. But they don't know. They, it's kind of, you get this like, you know, people paint you as like, I'm not an anti-vaxxer by any, by any means. So there's a correlation there, but it's impossible to prove causation. So we can't say, oh yeah, you know, for sure it was the vaccine [00:04:00] or was it the trauma?
I was taking care of my mom in her last weeks and days of illness. So hard to say the cause we don't really know. But that's sort of how it all came to be.
Jill Brook: So what symptoms did you have on that day six?
Karen: Yeah. It's, it actually started with like, like I, I felt like my vision was kind of off. Like it was blurry or I had to kind of keep squinting to sort of see, it wasn't double vision or anything. It was just like I could not focus my eyes well. That, you know, and, and really what it turned out to be was dryness in the eyes and then like a racing,
I wouldn't say it was like racing, but it was like a, a thumping, like I could feel my heart pounding in my chest and I could, like, it's crazy, but I can see my pulse in my eyes. Like it, they like, it's a strange, a bounding [00:05:00] sensation. Or I can like, if I look at like a part of my body, can kind of see it,
like bound with the pulse. So that I had quite a bit of like random patches of tingling which was, would later be discovered to be a small fiber neuropathy. I had no appetite. I lost a ton of weight. And I was like, I used to describe, I wasn't like, you know, we talk a lot about dizziness.
I wasn't spinning dizzy. I was like, I felt like someone had drugged me. Like if I was upright, I was like, whoa, like I can't think, I am like moving, I'm not moving or whatever. And then I felt like I could solve the world's problems if I was laying down to some degree or some extent. And those symptoms went on
acutely, I would say for about, I dunno, six to eight weeks and then slowly dissipated to a more [00:06:00] manageable, I suppose, more manageable level.
Jill Brook: How did you figure out that it was POTS?
Karen: I actually was just chatting with other clinicians who had similar side effects after the vaccine and, one of them said to me like, you know, you, you just, you sound a lot like POTS. And I was like, oh, I don't know. And you know, we kind of like wax and wane, so the symptoms would be getting better and then I'd get hit with like COVID infection or viral of infection of any kind.
And everything would like flare right back up. I'd like get her to bed and my heart rate would be, you know, 125 and just standing up outta bed. And I'm like, what is going on? Like, is it so, after a period of time I brought actually a lot of articles and like symptom tracking to my family doctor and I was like, I think this might be what this is.
And so got, touched base with cardiology and yeah, and then [00:07:00] that's how it all kind of came to be. And then I was put on ivabradine, or it's called Lancora is the brand name, and that changed my life.
Jill Brook: Really.
Karen: Yeah, it really, really, really helped. Yeah, I, I couldn't, so because I was fairly active before my baseline heart rate before I ever had POTS, like my resting heart rate would've been in the fifties, like low fifties.
And my blood pressure's in the 1 0 5 range, and so I couldn't tolerate beta blockers without dropping my pressures. Ivabradine is one of those unique ones that doesn't impact blood pressure. So it works well for my heart rate, but doesn't affect my blood pressure, and that has really made a huge difference
Jill Brook: So during this time, did you keep working?
Karen: At the beginning, the very first episode before I was diagnosed, like in 2021, I, I was off work for I think six weeks, and I tried to go, like [00:08:00] I, I also, like there was, I think people kind of wrote it off as like, oh, you know, your mom died young and you were taking care of her, and so this is all stress.
You're having a, like a nervous breakdown. Not my fam, like my husband didn't think that, but it was kind of the sense that I sort of felt from other people, or even like in the medical community is kind of like, well, you know, you've been through a trauma. And I'm like, I know, but this is like, crazy.
This is not what I would expect from that. And so I think I sort of believed, like, I was like, okay, like maybe I'm just, I, I'm losing, I thought I was like losing my mind, like super, super, that physical anxiety was just, it was like my sympathetic drive was just like fight or flight. Fight or flight, fight or flight.
I was like, don't eat, don't poop, don't like it was just like there's threat everywhere but you can't figure out what the threat is. And so I was off work for a while and then I did try to go back and I tried to like go right back full time and I couldn't. So I stepped back down [00:09:00] to kind of gradually get back into work and then slowly I was able to, yeah.
Jill Brook: That sounds all really, really difficult. I mean, like right now you're saying it very matter of factly, but I'm thinking, so your, your mom had just passed away like a month earlier?
Karen: Yeah. Like two, two months basically before, and I was like, I wanna get this vaccine 'cause I, we were, I'm like, I wanna get out of here, I wanna go on vacation. I'm not gonna be able to go get on a plane without it. I also, it was mandatory for me at work, like I would've lost my job and honestly I was like super, like, whatever, give me whatever needles you need to give me so that I can do my job and, and go away on vacation.
Yeah. So it was about two months after she died that I got the vaccine and I think I was just like, just kind of came home from that, from after taking care of her 'cause we didn't live in the same area. And then just like buried my head in my work and powered through [00:10:00] and kind of didn't spend any time grieving anything.
And so, yeah, it was a really bad time after I thought, I was like I didn't know what was happening, but I mean, if you're not in the medical field, you can Google these things and certainly come up with like a, a result like you're dying. And if you are in the medical field, you know, a lot of the possible differential diagnoses for this and you're starting to panic about all of those things.
So I was like physically very unwell and also mentally like, just like covered my head with the sheets and was just like in, like just despair, I guess.
Jill Brook: Yeah. How did, how did you get through that? I don't know, like, like how are you doing emotionally now and how like, like to talk to you, you seem like you're pretty okay.
Karen: I've had like a lot of ups and downs. It's been like, you're catching me in a [00:11:00] good-ish time. Like, but it is not, I would say like I haven't felt, like, you know, emotionally stable or physically stable for the last three and a half years, I guess. Things at the moment are like quiet again, and so it's like, okay, my symptoms are quiets not so anxiety provoking.
I think like a, my bigger challenge is I always had this like, thought in my head that it would just, I know POTS is a chronic condition, but I was like hoping that it would be, I would be one of those cases that just kind of remitted and, and it wasn't a huge thing. And so a big challenge now is just like accepting that this is probably part of my life for the rest of my life.
And I always have, like, I always worry about, you kind of become, or I guess I felt like I would become like one of those crazy people who is afraid of getting [00:12:00] sick. And then in your community, like your friends and family, initially people are like there for you and really supportive, but after a while they kind of get sick of you being like, I just wanna make sure everyone's well at your house before I come over, because if I get sick
I'm out, down for the count for like six weeks. And people kind of get sick of like having to, I think having you ask or they think you're just afraid of illness all the time. But I try to explain like, you get a cold and you're over it in five days. If I get a cold, I get sick, and then I get to spend the next several weeks fighting, like forcing myself to like
find that balance between not laying down too much, but also getting up and drinking the fluids and onto the salt and increase the heart pills. I always have this fear that one of these days, like, what if it doesn't calm back down again? And what does that mean? What does it look like? So, I think to answer your question about [00:13:00] how, like, how I got, I got through it, like, I think
my faith is like a huge point of strength for me. Although there'd definitely be times where I was like, I'm definitely times where I'm like yelling at God. Like, I like why is this happening? Like, I just wanna be normal. And when is this flare gonna calm back down? And, you know, but I think that's been a huge strength.
I have a really wonderful husband too, is very patient and has helped me a lot through this and been through, been to all the appointments and all the tests and all the things.
Jill Brook: That's great. Can I just ask, well shout out to wonderful partners. That's
so great. What does it mean to you to have him there at appointments with you? Like what, what, what do you like about having him there?
Karen: Yeah. I just like that I'm not alone and that, he's also like a good voice of reason. So if I'm like [00:14:00] going too far down the like dark rabbit hole of what ifs, he's pretty good at kind of drawing me back to present day and what we're currently dealing with and we don't know the future and that's helpful to have him there.
He also remembers things that the doctors will say that I sometimes need reminding.
Jill Brook: And I don't know about you, but I have found it, I've really been happy a couple times when my husband has been there at an appointment so that he could witness what somebody said to me because I didn't think that anyone would believe it otherwise.
Karen: I feel like that's a, it is such a battle when you have POTS knowing like, if people believe you or wondering, you know, if they believe you or they give, people say, oh, I have POTS, and they don't go, what's that? I don't know what that is. And is it real? And it's, yeah. So I struggle a lot with that, especially [00:15:00] because of what I do for work.
I sort of feel like I have to overexplain myself sometimes when, if I'm have, if I'm in a flare or whatever.
Jill Brook: Well, yeah, I was gonna say, what's that like?
Karen: I mean, in some ways it's like one, I suppose blessing of it all is that it's given me a way better patient perspective for my own patients. It also, it's on my radar. What, like when someone comes in with symptoms, I'm like, oh, let me check your standing and laying down heart rate here. And so that, that has been good because, and also like it gives you an an appreciation and an ability to understand,
actually understand what living with chronic illness is like. So it doesn't, maybe they, my patients may not have POTS, they may have something else, but you can relate on so many other levels just because you kind [00:16:00] of know like, man, this is a real struggle. And then, yeah, in terms of like, if you're in a POTS flare, it's like,
sorry, like, I can't get outta bed today. Like, and no, I am not, am I like acutely ill and gonna infect people? No, but I am telling you I can't get up. Like, and I'm, my workplace is really great and they are very accommodating, but yeah, you sometimes you feel just like, oh, like I, I hope they know, like I'm not faking it.
Like, you can come over and look at me. I'm not moving. Yeah.
Jill Brook: Yeah, so, so tell us more what your life is like now and what accommodations you've had to make. Like are you still able to go camping and what is different about it? How do you make that work? It sounds like ivabradine and staying away from sick people is big. Is there anything else that you kind of do to help get as much outta life as possible
or?
Karen: Yeah.
Um, I like, I think I'm very thankful, like, [00:17:00] if it's pretty, if it's controlled I've still been able to go camping and I mean, the biggest thing with, with biking, because that was like an activity that I previously enjoyed. It is still a sitting thing, which is good. I can't, like, I'm not at the same level of fitness that I was before.
I don't think I ever will be. But I guess the biggest thing is like just knowing and like having to be around people who understand that the other thing I struggle with is like, I can't, sometimes you can't predict the flares, like it, mine is also really hormonally mediated, so like with my cycles I was like, it took me forever to figure out why I'm like randomly in the middle of the month
getting these awful flares. And so I'm also on birth control to kind of suppress that. And but I need people around. I needed to like tell people like, I need you to be okay. I'm kind of flaky now because I couldn't, I [00:18:00] can't tell you like, yeah, I have plans to go here or there, do this.
And if I'm in a flare or I'm just exhausted by the end of the day, I have to cancel and I need you, if you still wanna be in my life, I need you to be okay with that.
Jill Brook: Most people been okay with that, or?
Karen: I think so. Or they say, you know, people say they are. And then you have to take people at their word. So, yeah.
Jill Brook: Can I ask, like, so what do you do for fun with your husband now?
Karen: We, we still do a lot. Like we still, we get on the indoor bikes right now 'cause it's still pretty cold here. Getting warmer, but it's, it's pretty cold here. We, I can't, like running as much as I enjoyed it, running is totally out for me. It's like one of the worst physical activities without like, just, I get like, like I feel like I'm gonna pass out.
Or like, I'm having some sort of heart attack or something, so I can't run anymore, but we'll go for lots of walks with the dogs. [00:19:00] Interestingly, I find walking actually is also enough to flare, especially in cold weather, so to be really careful with like cold weather activities. But yeah, we're still able to do that kind of stuff and I'd also love to like just sit down and watch a movie with some salty popcorn.
Jill Brook: That's great.
Do you feel like getting POTS has, I don't know, taught you any life lessons or enlightened you about any truths of the world.
Karen: Yeah. I think it's I think you take, or I certainly feel like looking back, I took for granted all the things I was able to do and I also had malaligned belief that because I felt like I was healthy and treated my body well, that I would be well, you know, until I was 90 or whatever. And so that's been like a hard lesson to learn and obviously nobody [00:20:00] chooses this.
And I guess the other thing I would say that I've learned, and I'm gonna be 37, but for sure when I was in my twenties, like being fit and active and being the fastest and being the strongest was a part of my identity. And I had to let all that go with POTS because I'm not ever, I'm never the fastest anymore.
I'm not the strongest. And I have to do these activities because I enjoy them, not because I'm trying to be like the best at something.
Jill Brook: So interesting. So you are yet another high achiever in the POTS club.
Karen: Okay. Is that a common thread?
Jill Brook: It feels like it. I don't like, I've never seen any data, but it really seems like it.
Karen: Yeah. Go, go, go my whole life and prove yourself. And I think, you know, finding my identity in, in Christ, in what I believe, in my faith. And [00:21:00] also just like, you know, like I felt like I remember crying to my husband once, like, what if I can't ride a bike anymore? And all these things like, you married me because you know, we shared all that together and what does that mean for us if I can't do these things with you anymore?
Or do them to the degree that we did before. So learning like, hey, people still like me even if I'm not this like crazy awesome cyclist, or there's more to me than that, those things.
Jill Brook: Yeah.
How many times have you found, identified POTS in a patient?
Karen: Maybe twice.
Jill Brook: Mm-hmm.
Karen: And I one was adolescent related, like the, the kind of classic appearance of adolescent. The other one was a post COVID infection presentation.
Jill Brook: Okay. [00:22:00] Yeah. And do you have any other little like tricks that you do to help feel your best? I don't know, anything that you do with, I don't know, your diet or your sleep or your whatever.
Karen: Yeah. I find like, and I've seen this a little bit on just kind of the Facebook group. I don't, I don't comment a lot on there because I feel like as a healthcare professional, there's some boundaries there. But I've seen that where it's like someone will be in a flare and you're feeling like really despaired or low because it's super defeating.
And so one thing that I've found helpful is to kind of, when I'm in a flare, like write down my symptoms and sort of track them and then, so that I can go back and see that I came through it. And so I try to like, try to remind myself that when I'm back in a flare, you've been through this before, it takes time, you know it, here's what you did to kind of get out [00:23:00] of it or calm things down.
I would say fluids are huge, and salt, although I have to balance the salts 'cause I do find, I get like kind of, I get bloated from too much salt and just kind of like swollen. But I compression, I mean that's obviously another big one. I find the compression aggravates my, my small fiber neuropathy.
So it doesn't work super great for me. But yeah, the salt, the fluids, the ivabradine, and then like giving, just giving yourself like tons and tons of grace. Like, okay, I can't do that today. Okay. Like, the laundry will wait. It's not the end of the world. It's not happening, and I'm okay to go. Okay. It's not, you know,
it's not happening.
Jill Brook: Yeah. I'm curious, especially as a healthcare provider, again, I'm guessing you've kind of paid attention to your flares, and do you feel like it's one of those things where you just have to be patient and wait them out? Or do you feel like you have some degree of [00:24:00] control over how long they last?
Karen: I don't think I have any control over how long they last, other than I can tell you the first time that this happened to me, I, I was so an, I was so like crippled by the anxiety about what was happening to my body that I stayed in bed for days and days, like probably weeks for the most part, sort of like
going to the bathroom. And I wouldn't, like, it was so bad, like I wasn't eating. My husband would come home from work, eight hours would've gone by and he'd be like, did you eat? Did you drink? And I'm like, no, no. I just laid in here in bed. Like totally crippled by anxiety, just begging to like go to sleep.
So I didn't have to be in my own head. That is bad for POTS. And so I have found the only, you know, the only thing that I kind of have control over would be doing like just finding the balance between up and then down, up and then down, and that [00:25:00] whole like lay in bed and drink nothing. There's nothing, almost nothing worse you could probably do for process to like just lay there for eight hours, completely dehydrated. So bad.
But I had no idea. You have no idea what, like at the time I was just like, I'm dying and everyone thinks I'm crazy. So...
Jill Brook: Yeah.
Karen: Just, I, you learn, obviously you learn those things.
Jill Brook: Do you, did you pay a price in terms of like getting deconditioned during that time? Did you have to work hard to be able to like bike again and stuff.
Karen: Oh yeah. Like I would say I was like, we went on a snow. We had a snowboarding trip booked in the February, and so I went on the trip and I could only ride.. . And I had already been reconditioning until that point. But like normally we would, I would ride all day out west and I could give a few hours,
I was back at the, at the chalet. My husband was out still with a friend. And like I said, you know, and [00:26:00] one thing that I will say the other thing hot tubs, like there was a common like snowboarding and then get in the hot
tub. Can't do that at all. The hot tubs. And alcohol is like, we don't drink at all in our house at all anymore.
Jill Brook: I almost got stuck in a hot tub once because I think my blood pressure tanked so much and I got so weak that I could barely get out. And I finally, it was a outdoor hot tub in the winter and nobody was around, and I finally just kind of like crawled up like a turtle or something and I just was like, had to lay there for 20 minutes until I was really cold again.
Karen: Really, like we were, I really discovered it on another snowboarding trip, probably like the following year. Got in the hot tub. It was an outdoor hot tub, so you think, oh, it's like, it's cool. So you're really in there for longer than probably even a person without POTS should be. And I got out, made it back into the room and yeah, it was like seven o'clock in the evening and I like curled up in the fetal position on the couch.
And I was like, Ken, like I, I, I'm [00:27:00] gonna hurl. Like I, that was a bad idea. And I went to bed and slept like 14 hours, something crazy, like 12 hours. It just totally sucked the life outta me.
Jill Brook: You know, it's funny because I feel like this is actually a glaring hole in the POTS advice that is given out to people. Be careful with hot
tubs.
Karen: Yeah, in a hot tub, you're sitting too. So you think, oh, well I'm sitting down. Well, then you stand up and it's like all that vasodilation. Your heart rate just goes through the roof.
Jill Brook: Yeah. And the danger is right, right, like when it's outdoors and you start out cold, so you think nothing of it, you're
freezing cold. It
feels so
good that first minute, and by the time you realize it, you can be too weak to get out. Yeah.
Karen: For all POTSies, if you're gonna get in a hot tub, don't do it alone. Or just avoid it all together.
Jill Brook: Oh my gosh. Are you up for doing a speed round where you just say the first thing that comes
up to your mind?
Karen: Sure.
Jill Brook: Okay. What is your favorite way to get [00:28:00] salt?
Karen: Liquid IV.
Jill Brook: What's your favorite drink to get hydrated with?
Karen: Vegetable juice or tomato juice.
Jill Brook: What is your favorite time of the day and why?
Karen: Hmm. 11 or 12 noon. The mornings are the hardest. I think that's true for a lot of us. Yeah. Smack dab in the middle of the day after I've had like, at least a liter of water.
Jill Brook: Where is your favorite place to spend time?
Karen: On a campsite, on a lake away from people.
Jill Brook: Nice. What is one word that describes what it's like living with a chronic illness?
Karen: Unpredictable.
Jill Brook: What is some good advice, anyone ever told you?
Karen: You are not your disease.
Jill Brook: What is something small or inexpensive that brings you comfort or joy?
Karen: Coffee.
Jill Brook: Who is somebody you admire?
Karen: My [00:29:00] aunt.
Jill Brook: Do you wanna say why?
Karen: Yeah, she's just kind of stepped into my life, I guess. Where my mom, we were super close and she's just kind of always, now she's, well, she's always been there and now she's extra always there.
Jill Brook: Oh, how nice. What is something that you're proud of?
Karen: Still, still going, I guess. Still getting up, still trudging forward.
Jill Brook: Yeah. Yeah, it sounds like you came through a lot. What is the toughest thing about POTS?
Karen: I think that it's unpredictable. It's never the same pattern, just when you think you know what's happening,
it changes. Yeah.
Jill Brook: What's an activity that you can still enjoy when you're feeling super POTSy?
Karen: Oh. Watching TV, I think that's about it. Yeah.
Jill Brook: Do you have any little tricks to [00:30:00] help you fall asleep?
Karen: Medication helped with that a lot. But I would say non-medication wise I listen to like a sleep meditation app.
Jill Brook: Do you have any little tricks for when you need energy?
Karen: Fresh air.
Jill Brook: What is a gift that you would have sent to every POTS patient in the world if you had infinite funds?
Karen: Prescriptions for ivabradine covered by drug plans. I think in the States it's probably a little bit different. It's expensive in the states.
Jill Brook: Oh, okay. Have you had a good experience with the Canadian medical healthcare.
Karen: Yes. I have been very fortunate. I have an excellent, excellent family doctor who listens and believes me. And I think that maybe has been a challenge for some people. And I know that the access to specialist care is very challenging. Yeah. Can be a lot of roadblocks.
Jill Brook: Yeah. Okay. [00:31:00] A few more quick ones. What are you grateful for?
Karen: I am grateful that I can still move my body, even though it's modified.
Jill Brook: Okay. Can you finish these sentences? I love it when...
Karen: The sun is shining.
Jill Brook: I hate it when...
Karen: I get sick.
Jill Brook: People might suspect I'm a POTSie when....
Karen: They see me lay down on the exam room table in the hallway.
Jill Brook: That's funny. I was just gonna ask, have you ever had to sit down or lay down in a weird place 'cause of POTS, and if so, where's the weirdest?
Karen: Probably the floor in the office, which is gross. I have a a mat, yoga mat now in case, I don't have to lay on the floor, but yeah.
Jill Brook: I just have a few more questions. If you could send your old self a message, the self that was lying in bed and doing [00:32:00] so poorly there in the beginning, what would you tell that person now?
Karen: It won't be like this forever. Get up and drink some water.
Jill Brook: I like that. Short and sweet. What do you wish more people understood about POTS?
Karen: That it's a real thing and that it's not like, yeah, people will look at me and be like, well, you are, you get on the bike and you're, you're active and and then you're seeing me at my best times. On, on medication like that, a lot of, you know, I, I have health benefits. I don't pay for this, but if I had to, it would be insane.
In Canada, I think it's close to a dollar 80 a pill and you take it twice a day. So I think, I just wish people understood that it really, there's a flux to it. And I wish people, I wish more people knew about it. Like it's so I can't, I was like shocked when I [00:33:00] was like, I never learn, like I never learned it.
Now just doctors, their education is different, but so in, in, as a nurse practitioner, you learn more common things. That's just the way the program is. But even for the docs that I've talked to, it's like, yeah, it's, it's way back there. Like we talked about it briefly, but it, it's not well known even in the medical community, which I think is a really common experience that people have,
have had.
Jill Brook: Yeah. Is there anything you'd like to say to your fellow POTS patients out there listening?
Karen: Yeah. Just one step in front of the other. Sometimes that's one horizontal step, I guess. Don't lose hope. I think there's always hope that it can settle back down for some people who have regular symptoms on a daily basis. And be your own advocate because I think it's really important when you are not, if you're talking to healthcare providers who don't understand or know anything about [00:34:00] it, be your own advocate.
Bring your information. Do it graciously and gently. Give them a chance to, to learn about it. To understand.
Jill Brook: That's great, great advice. Okay, last question. Is there anything else you'd like to add, and especially why did you agree to let us share your story today?
Karen: Nothing more to add, I don't think. I agreed to share my story, I kind of responded to your, the call out that you had put in the Facebook group, I think for a couple reasons. One, just, I think sometimes people think healthcare professionals are immune to this stuff. We're not. So, you
know, yeah, it's not your fault that you have POTS.
I, you know, you do everything right and this, this is just something that can happen.
And then I wanted, I think it's also, it's therapeutic to share your story, especially in something that's not well understood.
I think the more we talk about it, [00:35:00] the more people will know about it.
Jill Brook: I love that. Karen, thank you so much and I am so happy to see you smiling, like you kind of have made it past such a difficult time. I know everybody is pulling for things to just only be easier from here on out. And it's been so lovely talking to you. Thank you so much.
Karen: You're welcome.
Jill Brook: Okay, listeners, that's all for today, but 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.
