Lisa on living independently with POTS, blindness, and an intuitive Pomeranian

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

Lisa: My pleasure.

Jill Brook: So can we start out with just some basics about you? Like, where are you?

What is your age? What are the, what are the baseball card items we should know about you?

Lisa: Sure. I live in Pennsylvania. I am 57 years old. I have no idea how that happened. I am totally blind and I have been so since birth. Basically that is the result of a midline brain defect. So if you picture basically driving a tiny bulldozer right through your skull.

Where your nose kind of meets the center of your eyebrows and you drive that little bulldozer straight through and it kind of takes out everything in its path. So as a result, I don't make most hormones, including [00:01:00] growth hormone. I'm four, eight and a half. I'm shrinking. I have a little bit of osteoporosis.

I told my doctor, you know, I can't, I can't afford to shrink. I don't want to be a cube. I'm going to be as tall as, as wide, you know. But I also have Addison's disease, which means I don't make adrenaline. And the thing that started this whole kind of most recent fun ball of wax was that I contracted long COVID.

And well, I contracted COVID in March of 2020, and then that turned into long COVID. And I would say that the most, probably the most pervasive symptoms of my long COVID are POTS related.

Jill Brook: Wow, so that's a lot. And you know, going back to the bulldozer through your head, is that something that is just like a genetic thing?

And [00:02:00] what, what is it like to have no hormones?

Lisa: So it's something that was present at birth, but it's not hereditary. I'm the oldest of four girls, and I have my three younger sisters all can see. And there's no one else in my family who has this. They're not quite sure what causes it. Not having any hormones was weird because this is part of a whole syndrome, and they would do, quote, the standard tests and say, your hormone levels are fine.

And then I learned with my syndrome, oh no, you have to have this weird, out there test. And then they'd do this weird out there test, and they'd say, oh, your hormone levels are really messed up. The two that were the hardest were having low thyroid and dealing with that. Even with the fatigue I have with long COVID, there is no fatigue in the world like low, like low thyroid fatigue.[00:03:00]

And then the other thing is the adrenaline. I have to be careful. If I'm sick, you know, if I get really sick, or even if there's a huge stress, like a death in the family, or maybe a car accident, and you walk away without a scratch on you, you still might likely need to take extra adrenaline, and I do take extra now that I have long COVID, unfortunately my body seems to take and suck up all I can give it, and you can't take too much of that because it will kind of eat your bones for supper.

You end up with osteoporosis, which is a risk with, with any steroids.

Jill Brook: Wait, that's so interesting to me because well first of all, is that the same condition that JFK had?

Lisa: I have no idea.

Jill Brook: Okay, I think it is.

Lisa: How interesting.

Jill Brook: Yeah. But [00:04:00] so, for a lot of POTS patients, you know, they get that hyperadrenergic state, I know that I do, where there's too much adrenaline all the time.

And so, to hear you say that you sometimes need it.

Lisa: I take it every day.

Jill Brook: That's like foreign to me. Can I like ask, so, what happens if you don't have it?

Lisa: So, it, it starts, I feel really overwhelmed. It starts out almost with a mental component. I feel really overwhelmed. Like, whatever it is, even if it's as simple as getting out of bed, like, it is absolutely beyond me.

There will often be tears. I will shake. I can lose feeling in my extremities. If it gets really bad, which I think it's only ever done once in my life, but I will, well, more than once, but like, I will sob very hard and can end up throwing up, and once you start [00:05:00] that you pretty much need to go to the emergency room to get I.

V. But fortunately, at least for the most part, I can manage it by taking oral medications every day. It's really hard, though, because there's not a test to tell you when you're low, so you can't test your, your cortisol levels like you can test your blood sugar for diabetes. And so, sometimes you're so busy feeling upset and overwhelmed that you don't think, Oh, newsflash, you know, my cortisol levels are a little low.

But fortunately, I have some help with that at the moment. I got Gracie, and Gracie is my dog. She is a little brown big hearted, big mouth Pomeranian. She's not quite five pounds and the timing was so amazing. I got her three months before we went into lockdown and I live alone, except now [00:06:00] not, and so she's been wonderful company. But I had her for about three months, and one night, she woke me up crying, and I thought, well, I can't gripe at her, I sometimes have to get up in the night, so I let her out, thinking I would, you know, let her go to the bathroom, and it's not what she had in mind, she went to the other end of my little apartment and ran at me full tilt and jumped on me so hard that it hurt, it actually hurt.

I was like, ow you know, and ...

Jill Brook: She like body slammed you.

Lisa: Yes. It was like three in the morning. And I'm like, what, what is going on? And she did it again. And then I'm concerned because I'm like, okay, this is really off pattern. I'm like, did she not feel well? And then all of a sudden I went, you know, I really don't feel well.

And I realized that my cortisol was low. Cause you, it's not like a bolt out of the [00:07:00] blue. You don't necessarily know right away. I took my pill and she had been pacing and pacing and pacing that whole time. And about five minutes after she stopped and went back to bed. And so I have, she's done that several times and there have been times where I had to hold off taking the medicine like if I was getting blood work.

And so I would use that as a training opportunity to reinforce. So it's, that's really helpful.

Jill Brook: That's so interesting. Go Gracie. It's, wow, only five pounds and so smart.

Lisa: I wouldn't know how. I wouldn't even know how to train that. All you can because I've had three dogs before her. They were all labs. They were guide dogs and my third one,

I trained myself, but how you train for something like that. I can't give her low cortisol on demand, you know, that was just something she did and then [00:08:00] I reinforced it so that now anytime I am low she will do that.

Jill Brook: Well that's interesting that you say that because we had an interview with a dog trainer on here once Who said the same thing about dogs just on their own learning

to in one case, I think it was learning to detect when a like a fainting spell was coming on in a POTS patient and another one just when her blood sugar was going to get dangerously low. And in most of these cases, the dogs just figured it out on their own. They didn't have to actually get trained.

Lisa: I was all ears when that podcast came out. That was fascinating to me.

Jill Brook: So, yay dogs. Oh, that's, that's wonderful.

Lisa: Absolutely.

Jill Brook: So can I just ask, so it sounds rough to live by yourself when you have all of these various things going on.

Lisa: Well, I mean, it can be. But I've also gotten to that age where I [00:09:00] think I've regressed.

And if I lived with somebody else, I'm the kind of person that would be saying, you're not the boss of me! So, you know, I, I have lived with others and I've lived by myself at various times throughout my life. You know, it depends on the person. For now, there's not that right person, and I'm, you know, I'm pretty happy.

I really think that having to do for myself kind of kept me sane after getting COVID. I mean, at the beginning, it was really bad. Like, the first year, there were times when I just thought, you know, do I need to go into a care home because I was so weak and my balance was so bad that even going to the bathroom or cooking myself a simple meal, I was holding on to things for [00:10:00] balance.

Man, that first year, all I can say is I hope that whoever invented canned soup died a very happy and wealthy person because they deserve it. I mean, I like soup anyway, I, I like to make my own but. You know, sometimes canned soup really got me through that first year.

Jill Brook: Yeah, well, you sound really strong, like, because I wasn't really, I wasn't thinking about, like, being lonely.

I was thinking about, like, when you hear a scary noise in the middle of the night, or when you're just, like, so dizzy from your POTS that you just have to sit on the ground, or I don't know. You sound like you've figured out a lot of ways to just be really resilient and independent and take care of whatever's going on.

Lisa: The only time I was really afraid was my, my electrolytes got off balance and I had [00:11:00] incredibly bad leg cramps to the point that I was like, well, I was verbal about it. I'm crying. Gracie was crying. It was awful. And I really was kind of afraid to be alone because it was scary, you know, so I called a friend and we stayed on the phone for a little while and, you know, I did end up getting the problem treated because I hope to never experience that again but yeah, I mean, there are ups and downs, but I think one thing, one advantage I have in being blind is that I've learned to look for creative strategies and coping mechanisms.

And I've learned that disability doesn't have to be a bad word. I mean, the one thing I've really struggled with, [00:12:00] well, I can be proud and I can be stubborn, but the one thing I really struggled with was I don't need a blank, blank, blank chair in my shower. And it was like, I really did. So I knew what I wanted.

I ordered it off of Amazon. I there was much talking to myself, but I got the dumb thing put together and it sits in the back of my tub. And, you know, most days I don't need it. And some days I think, you know, I could take that out of there. And it's like, yeah, I'll give it another day. And then the next day, for whatever reason, it's like, oh, you know, I really need it.

But I think it's easier for me, it has been easier for me to make the transition to using some of that kind of disability related equipment because the stigma isn't quite as bad? I don't know.

Jill Brook: Well, and so the reason that I met you is because you had written in a fabulous request [00:13:00] to the podcast, which was to say, hey, how about we have more episodes talking about little lifestyle tips and hacks to make everything easier.

And then you gave your example, which was the best example I've ever heard, and I've never heard anyone talk about it. And so I think we should make this the the introductory mini episode of hacks that might help people. And do you wanna start by sharing yours?

Lisa: Sure. Actually,

I felt like I got a lot of them from just listening.

When I first found the POTScast, I binged a lot of episodes. I don't remember how many, but it was a bunch. And I heard things, you know, like compression and that people needed extra salt and I've always liked salt, but oh my goodness, when I got long COVID, the cravings for salt were just like, I would pour salt into my hand and just eat [00:14:00] it.

And that didn't really help my quality of life, but it helped me not feel so weird. So, my, my thing that I've figured out= through a bunch of years, actually, was if I have a busy morning, because I work from home. I, I am very blessed I'm able to work full time. Sometimes I am answering calls and attending meetings from bed.

Other times I'm in my recliner chair, which works as well. That's another kind of minor tip, is the more I can support my body if I need it. Like, a stool is the worst thing to sit on. A recliner is second best. A bed is the absolute, you know, that's the best. But supporting my body helps. Also, the the tip that I shared with you was if I have a busy morning, let's say on [00:15:00] Sunday when I go to church, and I need to eat and shower in the same time frame, I need to shower first because eating will completely wipe me out.

I was really very upset with myself because I would eat maybe an egg and maybe like two strawberries, you know, for breakfast and I would feel so full and like I needed to go back to bed. And I I know what a normal breakfast is, but I thought I must be overeating. I must be doing something wrong. And then I I heard someone talking about the fact that your body uses so much energy just to digest your food.

I was so relieved that there was a reason, I cried. I, I just, I, I really, I mean, people talk about being gaslit [00:16:00] by medical professionals or by family. I didn't need that. I didn't have that. I gaslit myself just fine. You know, you're really not sick. You're just not trying hard enough. You know, and I thought it was the same with my eating.

And so, I just found that for me, you know, that first meal of the day is really touchy, and if I've got somewhere to go, you know, maybe I just need to wait and eat that later, eat it small, or like cut my egg in half and maybe eat half of it around eight, half of it around nine, you know, to keep my body from having to work less hard.

Jill Brook: Yeah, I think that is so smart and ever since you told me that I have this little rhyme in my head That's like shower before eat to stay on your feet.

Lisa: There you go. That's it.

Jill Brook: I feel like that should be right up there with all the other big tips that are given out. But so [00:17:00] that's interesting. So after all you've been through and how strong you are and how independent you are, you still gaslight yourself?

Lisa: It's getting better, but I used to, I really just felt like, okay, I was weak. I heard a podcast by a man with long COVID. And I know this is very like gender roles and gender stereotypes. Everyone I had heard speak with POTS and with long COVID were women. So the first time I heard a man, I cried through that whole podcast.

It was like, wow, men get this too. I'm not just weak. I'm not I would like to be more athletic than I am. I carry more weight than I should. I actually had bariatric surgery two years before COVID and I honestly think that losing the weight I did was what what kept me alive, [00:18:00] but, you know, and that too was why I'm like, okay, am I doing the whole eating thing wrong?

Cause I knew I should eat less, but it just, you know, it really, I don't know. I, I kind of messed with my own head, but there was actually a reason for that because I think my feeling was, and I, I'm a lot better at this than I used to be, but my feeling was, Okay, this is my fault, because that's wonderful because if it's my fault, I can fix it and I really can't and there's no guarantee that if I do these good three things in a day that I'm gonna feel better tomorrow. There's no guarantee that if I do everything wrong that I will feel...

Jill Brook: The only thing worse than having it be your fault is having it be out of your control.

Lisa: Exactly. So I think that's why I did it. And you know, somebody should develop an app where you can schedule your bad [00:19:00] days. Nope. Nope. I have too much going on that day. I can't afford to have a bad day, but I could have a bad day on Thursday. That's what we need.

Jill Brook: And then you can start synching it with your friends too, right?

Lisa: Exactly. Exactly.

Jill Brook: Oh my gosh. Yeah. Yeah. So, I mean, do you mind giving us a snapshot of what your life looked like before your long COVID?

Lisa: Well, 2019 was a lot of changes for me. I got a new job and that was working from home.

And then I had a friend who had a very bad stroke in 2017, and she was in a nursing home, and she was, I was pretty much her only family, and so I was going every day after work to visit her. So I'd work 8 to 4. 30, I'd get on the van, [00:20:00] I'd get to her by 5ish, I'd visit until 730, I'd go home, I'd do what I'd need to do and I'd rinse and repeat.

So it was, it was pretty busy. When I got COVID, I just remember feeling like, and I don't know why it was like this compulsion, I need to keep moving. And walking or much like that was out of the question and I had a stability ball and I would bounce on the stability ball and there were some days it was so bad I literally would be by my kitchen table because you know you're lower when you're on a stability ball And I would be bouncing on the stability ball and I would have my head on the table because I was so sick. I remember my sister saying, should you go to the hospital?

And I said, maybe. But I said, first of all, I'd rather die than be on a ventilator, and I mean that literally. And also, I [00:21:00] had just gotten Gracie, and I felt like nobody's gonna take as good care of Gracie as her mama. So, I think, you know, keeping moving, keeping, you know, I think that kept me out of the hospital by the skin of my teeth.

So, I mean, I really just took for granted, I mean, I think I always, because of the various hormone things, I think I had more fatigue and more going on than many people, but, you know, I just kind of went when I wanted and I did what I wanted and, you know, if I wanted to take a trip, I did it now. I just went over Thanksgiving to visit a friend in New Orleans and that was a big like, okay, do I have the energy, you know, and this was someone who kind of knew what I was dealing with and it actually was wonderful.

We were going to go a couple places and we didn't. We stayed home and we were slugs and we gabbed and we played Scrabble and we grilled on [00:22:00] Thanksgiving and it was lovely.

Jill Brook: Oh, that's wonderful. That's wonderful. So you are not that limited by your POTS is what I'm hearing.

Lisa: In some ways, no. Like, if I had to, I do, I use Instacart for my groceries.

I don't think I could go to the grocery store and wait in line. This, like, I can walk. I have relatively decent ish endurance. Walking is not so bad. Standing in one place is really hard. I, I feel like I'm going to pass out and there are times when, now this is a good bit better now that I'm on a beta blocker, but there are times when I just need, I jokingly call it a horizontal reset, but I need a minimum of two minutes lying flat on the [00:23:00] bed.

Now, I may not feel like a million bucks when I get up, but I don't have that feeling anymore like of if I don't lie down immediately, I'm going to cry. I mean, I've lain down on the couches of virtual strangers, which is a little embarrassing, but, you know, you kind of lose a lot of that when you get desperate.

So, I mean, I would guess I'm probably right in the middle. I think that I have it harder than some, and easier than some. And I've noticed, and again, some of this is the beta blocker, but I've noticed a gradual improvement. Like, for a long time, I couldn't wash my dishes. Because standing still at the sink was, you know, ask me to drive to the store for a quart of milk,

that would be easier, you know. But so what I would do is I would wash two or three dishes [00:24:00] and at the time I was living in a little studio apartment and I would pace the length of my apartment and I could come back and then I could do two more dishes. I really learned ...

Jill Brook: Oh, there's another good hack!

Lisa: Oh, I really learned about, like, because well, what I did for my job for a long time, I worked for the state for 12 years, and I worked with people who lost some of their sight, teaching them to live independently.

And so, what you learn to do is to break things down into small, manageable steps. And so, I mean, like, for example, I made, our family had our Thanksgiving dinner recently, and one of our traditions is someone makes my grandmother's cheese log recipe and I made that so like one day I chopped the onion and the pepper that I needed and I ground the nuts.

The next day I mixed up the stuff and then the morning of [00:25:00] I made, rolled, made the cheese logs and rolled them in nuts. So I've learned to like break things down. I mean, you really can get a fair amount done that way, you know, and of course, naps are my new friends. Naps used to be for lesser mortals.

You know, I still don't really like the way I feel when I wake up from a nap. Often I just, I don't know, it feels weird like in the middle of the day and I kind of feel grumpy, but I often need I would say most days I need a nap just to function through the day.

Jill Brook: So it's funny. For me, it's brushing my teeth that I can't stand still and do.

So I end up walking around and starting to do things. And it's funny because oftentimes, you know, you get into some new project or you get playing with the dogs. And I think some days I probably brush my teeth for 20 minutes because I don't want to [00:26:00] stand still.

Lisa: Oh, I sit on the toilet to brush my teeth.

Jill Brook: Oh, there you go.

Lisa: I mean, like, just, you know, clothed, but I just, I mean, if I can stand, I do. If I can't, I just sit on the toilet.

Jill Brook: Genius. Yeah. Yeah. Hey, can you talk about the layer cake metaphor that you had mentioned earlier?

Lisa: I was really discouraged at the beginning of my journey. So, when I first got long COVID and POTS, I I don't know, I just really thought that someone was going to ride up on a white horse and they were going to have the cure.

I'm making big air quotes. The cure. And unfortunately, I've learned that there really isn't one thing. And that my quote, the cure might not be yours. I [00:27:00] mean, people would say, Oh, I had wonderful success with taking ABC supplements. Now I'm making up that name on purpose, you know? And so what would I do?

I would go out and I would buy ABC supplements and they wouldn't do anything for me. Or I would discount them because they did so little. And that was what I learned, that it's really not someone riding in on a white horse with one cure. It's more like very slowly constructing a layer cake with thin, thin layers sometimes.

And if I may, I want to mention one of my very favorite layers for me, and that has been, I joined a choir and I love to sing, but singing at home and I play piano, but doing those things at home is [00:28:00] somehow different than doing them with other people. And when, when I have choir practice, I, I would say 95 percent of the time

I come out feeling I come out feeling both physically and mentally so good. I really think that maybe the breathing together with others or something. I've also, I recently completed this course called the Safe and Sound Protocol that is supposed to help stimulate the vagus nerve.

Jill Brook: Oh, yeah, yeah.

Lisa: I've had very minor results, but some people can have them up to two months after completion and I just finished it on the 30th of November. So we'll see. I've had little, I've had little changes so, but yeah, choir for me is a very I feel like it's a very big part of things. [00:29:00] It's, it's almost like getting, you know, a day, one day a week, where at least at the end of it, you know, it's gonna, you know, you're going to feel really pretty good and it's great because we're all ages and so for the concert I,

we have chairs, and I sit for some songs, and I stand for some songs. Obviously, if I have a solo, I stand. I'm a first soprano, and one of our songs had the B below high C, which, if you're not familiar, is really very high, and it is suicide to try and sit and sing that because then you really sound like the Minnie Mouse Choir.

So I, I basically would stagger it so that like, okay, I need to stand for that song. Therefore, I'll sit for this song. But there are some people who stand for the whole concert and there are some who sit for the whole concert. So wherever, wherever [00:30:00] you are is okay, which is wonderful.

Jill Brook: I could tell you had a beautiful voice, but you have like a real soloist...

Lisa: I've done a little. I've, I, I love to sing and I can sing alto just because I love harmony. If nobody's singing it, I'll do that, just because, well, everybody singing the same thing can be boring.

Jill Brook: There's, there's no there's no audio of your pieces online, is there?

Lisa: Yeah. Yeah. I could, I guess I have a small solo in the one song and it was still early ish enough in my recovery that I sounded much more breathy. That's the other thing. I feel like I've gotten better breath support back. You know, both for singing and speaking, you know, through singing. It's not like it was awful, but I really

especially at the beginning, I felt like I was taking breaths like every other word.

Jill Brook: Oh, oh, because your lungs were [00:31:00] just still kind of ...

Lisa: Yeah.

Jill Brook: Hurt by, by the COVID?

Lisa: Yeah.

Jill Brook: Yeah, yeah. Oh, well, I'm so glad that you were able to to recover from that. And I'm sure that has made a big difference and, and it is kind of perfect that it stimulates the vagus nerve for the, for the POTS.

Everybody seems to agree that that's valuable.

Lisa: Hey, it beats sticking a toothbrush down your throat. Somebody said that like you have to activate the gag reflex. I'm like, no, I think I'll just sing thank you.

Jill Brook: Oh, that's fantastic. Well, we're just about out of time, but is there anything else that you would want to say to your fellow POTS patients out there or any message you would give your former self when you were new to POTS or anything you wish just more people knew about POTS?

Lisa: I'm gonna cry real tears if you don't do a speed round.

I've been looking forward to those.

Jill Brook: Oh, speed round!

Lisa: My bucket list won't be complete.

Jill Brook: Let's do it. Are [00:32:00] you ready?

Lisa: Sure.

Jill Brook: What's your favorite way to get salt?

Lisa: Garbage pizza. Like pizza with all the meats on it. It's so good. I don't do it often, but yum.

Jill Brook: What is the drink you find the most hydrating?

Lisa: I would say water only because I'm trying a couple now. I really don't like the electrolyte replacements, but I drink a ton of water. I mean I make my eight, eight ounce glasses usually by about four or five in the afternoon.

Jill Brook: Oh, nice going. What is your favorite time of the day and why?

Lisa: Usually around this time of day because this is around the time of day that I generally feel the best. Morning is often the ninth circle of hell. I've never been a morning person. This has just made it worse. And night, you know, you're getting tired, you're winding down, but this time of day is like, oh, there's still possibilities left for [00:33:00] this day.

I like this time of day.

Jill Brook: Okay. Which is about 7 p. m. ish?

Lisa: Well, more like 6. I, like, I would say, yeah, I would say like between 5 and 7.

Jill Brook: 5 and 7. Okay. Where is your favorite place to spend time?

Lisa: Gosh. Lately, it feels like bed just because by the time I get there, it's like, oh, I've been waiting all day for this. I mean, I, I, at the beginning, I was spending about 16 hours a day in bed. That was a bit way too much. But especially if I've had a good day, it's like nothing feels better than getting into bed.

Jill Brook: What is one word that describes what it's like living with chronic illness?

Lisa: Ooh, only one. Uncertain.

Jill Brook: What is some good advice that anyone ever gave you?

Lisa: It's so overdone. I, it's give yourself the grace you show to other [00:34:00] people. It's easy for me to be kind to other people. I say things to myself I would never say to anybody I care about.

Jill Brook: What is something small or inexpensive that brings you comfort or joy?

Lisa: Small, yes. Inexpensive, no. Gracie.

Jill Brook: Who is someone that you admire?

Lisa: This is going to sound really corny. I admire everybody, because everybody, even when it doesn't seem like it, people are trying hard. People are doing the best they can. And I don't know, I was, that was so on my mind all day today. I I don't know. I was watching a movie about this town that ended up adopting like 70 kids and, and like how the kids, even when they were acting out that they were still doing their best.

And it's like, when I, you know, when I'm tempted to snap at someone or [00:35:00] pass judgment, and then I hear about what they're going through, I realize, you know, they're really pretty amazing.

Jill Brook: That is very generous of spirit. What is something you're proud of?

Lisa: I'm proud of coming through this with my humanity intact. I don't think I've, I've been morose sometimes, but I don't think I've been snappy or impatient. My dear friend who had had the stroke and is since deceased, she said to me, you know, the thing I like best about you is that you are always the same and I've really, I really strive to be that way.

Jill Brook: Oh, that's nice. And I'm so sorry to hear that that your friend didn't make it.

Lisa: Well, it's, she was really, I mean, she couldn't get out of bed without help. And so I think she was ready. The loss was, you know, for the people who loved her. So.

Jill Brook: You have been through a lot [00:36:00] these last few years.

Lisa: Oh, it's been a ride.

Jill Brook: Yeah. Wow.

Lisa: I have one more for you. You always, you tend to ask about a gift that you would give to every POTS patient. I got this wonderful thing. I don't even know exactly what it's called. I think it's like a nursing pillow, but it's, it's a huge letter U. Like I said, I'm about 4'8 and if I stand this thing on its, legs.

It's long legs. It's as tall as me. And so what you do is you put your head on the top of the pillow and then like I'm a side sleeper. So you have these long legs and you basically can move them out of the way or put them against your body and like cuddle up in this thing.

My sleep is much more disrupted since COVID and [00:37:00] sometimes it's enough,

especially when it's cold like now, it's enough for me to just like relax and sleep and it's a great, great thing.

Jill Brook: Smart. So it's like a double body pillow. So if you turn right or if you turn left, it's ready for you.

Lisa: I, my niece was over one time and she said, how does it work? And I laid down on it and she says, yeah, Lisa, there's no nice way to say this.

She said, you look like a little kid in a ball pit. I'm like, that's great.

It works.

Jill Brook: Okay. Good answer. Good answer. Okay. I've got a few more speed rounds for you. Okay. What is the toughest thing about POTS?

Lisa: Not being able to stand. I mean, we do so much standing, so much waiting in line, even like waiting at the counter to get checked into the doctor. Sometimes I'm good to stand for five minutes. Sometimes 15 seconds is beyond me.

Jill Brook: Amen to that. What is an activity that you can [00:38:00] enjoy even when you're feeling really POTS y?

Lisa: Reading. I, I read so many books. I read audio, I read braille, I read whatever I can.

Jill Brook: Nice. Do you have any favorite book to recommend?

Lisa: Yes. All of them. I'm, I'm a Harry Potter fan. I like Amish fiction.

Jill Brook: Amish fiction?

Lisa: Yes.

Jill Brook: Is that just like a thing?

Lisa: Yeah, oh, it's a big thing. Gosh, it's almost like its own genre.

Beverly Lewis is a really good author. It's it's cleaner than some. You know I don't know. I just, I like so many different kinds of books. I mean, and I read things that don't even relate to me. I don't have kids, and right now I'm reading a book just because it interested me about teenagers with borderline personality disorder.

So, you know I'm either weird or eclectic, depending on your perspective.

Jill Brook: You're curious. That's good.

Lisa: Yes, I [00:39:00] am.

Jill Brook: What helps you fall asleep, if anything?

Lisa: A lot of things. I take some meds to help facilitate that. Here's a good tip. Find music that you like. Something without words, something that's pretty relaxing, listen to the whole CD or album or however you're going to play it to make sure there's no loud surprises and then save that and only play it at night.

Either when you're falling asleep or when you wake up in the middle of the night. And your body will start associating it with sleep. It's not foolproof. But it does help.

Jill Brook: Smart. Okay. What gives you energy, if anything, when you need it?

Lisa: Weirdly enough, sometimes getting a shower wipes me out and sometimes it gives me energy.

The other thing that gives me energy that I hate to do. I, I don't [00:40:00] like to be cold. I really don't. But sometimes, you know, if I've got to go out and take out the trash or get in the mail or whatever, and I've been out in that crisp air, I think you know, Oh, you know, I do feel better. If anyone brings it up to me, I'd probably deny it, but it's the truth.

Jill Brook: Okay. What is something you're grateful for?

Lisa: I'm grateful for long distance friends. I moved here about two and a half years ago and I still haven't really made that many local friends. And so I'm grateful that I can keep in touch with people through various ways and for example, I have a friend in Louisiana and I have a friend in Oregon and they've both been very supportive in different ways.

And I think we're, we're lucky to have all the good people in our lives we can.

Jill Brook: Oh, that's nice. Okay. All right. So last question. Is there anything you'd like to say to [00:41:00] your fellow POTS patients out there and or what do you wish more people knew about POTS?

Lisa: You're not alone. I, I didn't, I didn't know at first.

And I kept hearing like this. The first thing I heard on the news was like long haul. And I'm like, what the heck is that even? It sounds like I'm a trucker, you know, but I didn't realize, you know, but then other people with long COVID, their long COVID wasn't like mine. And then I found that there was a lot going on with POTS and really treating some of that has, has made a big difference.

But I think just knowing you're not alone. And you have the right to have support. I mean, I know a lot of people, for example, do a lot on Facebook. I don't. It's, there's a lot of pictures, a lot of graphics. It's [00:42:00] more work and less payoff. So, podcasts, and now there are some books that are out, but that kind of thing.

It's, it's a more passive way to get information. You subscribe and you're done. And I think sometimes those passive ways can really be helpful when your energy is kind of in the toilet.

Jill Brook: Yeah. Yeah. Well, Lisa, thank you so much. You've given us so many fabulous practical tips in addition to great insights. And we so appreciate you sharing your story and your journey. And I know that everybody listening is wishing you all of the best. And if you decide to share a link to one of your choir solos, we will share it in the show notes, but no pressure.

Lisa: I will do that.

Jill Brook: Wonderful. Wonderful. Well, it's been so lovely to meet you.

Lisa: I have enjoyed it so much. [00:43:00] Thank you.

Jill Brook: And hey, 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.