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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 Taylor. Taylor, thank you so much for joining us today.

Taylor: Thank you for having me.

Jill Brook: So tell us the basics about you. Who are you, where are you? What should we know?

Taylor: My name is Taylor and I am located in Southwest Florida. I was originally born and raised in Michigan and I moved here when I was still in high school. So I've spent most of my life here, honestly now. And it's very hot here. And I enjoy things like going to the beach spending time with my animals and coloring.

Jill Brook: That's so nice. Tell me more about your animals.

Taylor: So I have three cats and three dogs. I actually have a service dog in training. His name is Milo and he's a Bernese Mountain dog. So I'm very grateful for him.

Jill Brook: Oh yeah. And you said you live in Southwest [00:01:00] Florida, so is that like, I don't know, in the keys or something?

Taylor: No, it's near, most people know, like Fort Myers area, the big party town of, you know, where a lot of college kids go and stuff. So I'm near there.

Jill Brook: Ah, okay. Okay. Sounds exciting.

Taylor: Yeah, I guess you could say that.

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

Taylor: They would probably describe me as very outgoing. I like to talk to people. I'm definitely pretty self-disciplined and I try to be very positive. So a lot of people like to tell me that I'm very positive in the worst situations.

Jill Brook: Excellent. Okay, so what, what would you say are like your strengths? If we make you brag about yourself, what are you good at?

Taylor: Oh goodness. This is a hard question. I like to say that I'm very good at like, structure. I'm very good at like, following through with everything that I say, you know, say and do, whether it be work or, you know, [00:02:00] even just something I tell someone I'm gonna do. And, and I'm a very good planner. So I'm very like, you know, my calendar has to say what I'm doing. If my calendar doesn't say it, well I'm not doing it, or you know. So that's definitely one of my like good qualities I guess. And some would disagree 'cause some people like to go on the fly. I wish I could, but I can't.

Jill Brook: Yeah. Yeah. Okay. So did you have a life before POTS? If so, when was it? What did it look like?

Taylor: Oh my gosh, my life before POTS was great. And back then I didn't think it was, but obviously I would do anything to be that way again. But my life before POTS, I was still in school, so, and I was in college too before. So I did a lot. I was constantly on the go. I was constantly, you know, traveling outside, going to the beach in the 105 degree weather and it didn't bother me.

I played a lot of sports, basically everything that, [00:03:00] you know, a kid in school or college does. So I did, I mean, everything, you know, it was fun. I had a lot of fun.

Jill Brook: Yeah. Okay. And then what happened?

Taylor: And then everything stopped. Literally everything. I stopped working, stopped driving stopped going outside because the heat, obviously here in Florida. It's, I mean, it's hot all the time. I, I get lucky, you know, during those few months of the cool weather, I can do a little bit more out outside. But 90% of the time here, it's over 85 degrees and extremely humid, which the humidity makes it even harder, you know. But you know, so now I don't really do too much especially during the summer. I stay inside and try to find things that I could do inside to keep my mind off of my problems.

Jill Brook: So, how old were you when POTS struck and what was the first sign?

Taylor: The first sign, well, I was, let's see, I was 19, [00:04:00] 19. I was on a cruise ship and I got COVID, and my first sign was, well, I had COVID. And then all of a sudden, like three weeks after having COVID it, I felt worse than when I had COVID. So I was like, this is weird, you know? So that was my first indicator that I wasn't healing and I was getting worse.

Jill Brook: And what did you think was going on? Like what did you do at the time? How did you eventually find out that it was kind of this chronic thing?

Taylor: Yeah, I so I kind of just kept thinking maybe it's lingering longer, you know, like some people take longer to heal. Like when my mom had COVID, it took her a lot longer than I, it took me the first time I had had it. So I was thinking maybe it's just, you know, taking longer, it's affecting my body different this time, different strain, who knows?

But after like a month, I kind of just broke down, I'm like, oh my gosh, like I am having like all these weird feelings and I'm feeling really lightheaded every time I stand up and all these weird things, that just didn't seem right to me, you know? And so, I found a primary care doctor 'cause I actually didn't even have [00:05:00] one before that 'cause I was healthy, you know? And so I found one and I started, you know, with all the testing and stuff and, it took me a long time after that. That wasn't just an easy answer. It, it wasn't, you know, it took a long time. It took two years. Which I'm blessed for two years. 'cause I know some people it takes a lot longer, but to me it felt like an eternity.

You know what I mean?

Jill Brook: Yeah. And during that two years, what was happening?

Taylor: I was getting told I was crazy. I was getting told that I had massive anxiety problems and I needed help and I needed therapy and I needed medication to make me, you know, my anxiety better. And you know, you're just blacking out because you're panicking so hard and blah, blah, blah, blah, blah.

And that went on for a really long time.

Jill Brook: Is that even a thing that happens, people panic so hard, they faint? Or is that something that somebody made up?

Taylor: I don't even think so because I've actually looked it up and it says it's like very, very rare. But I started to believe them. You know what I mean? Over [00:06:00] time I was like, maybe I am crazy. Maybe I am, you know, have mental problems and I'm struggling and 'cause I was going through a hard time at this time in my life actually.

I had other stuff going on per like personal, and so I thought maybe it was just subconscious problems? Well, after that I kind of believed them, went with the flow, the medication made it worse, not better. And I just kept fighting and fighting. I found different doctors that, you know, ran other tests and I found basically everything else that was wrong with me that like, you know what I mean,

like silly little things, like nodules on the lungs or like random little things, you know? But, I knew that was not the problem, you know? And I thought the closest thing to my problem was I was diagnosed with hypoglycemia during that process and I thought, oh, maybe the shaky dizzy was that. But I got that pretty much under control and I'm still on a monitor to this day.

But that wasn't the problem 'cause I still [00:07:00] felt miserable. So that was kind of like that whole process until I decided to go to the Mayo Clinic.

Jill Brook: Okay, and then you finally got the right tests and the right answers.

Taylor: Yep. After that they finally helped me. I went there twice 'cause I went through like their clinic, because unfortunately here in southwest Florida, we have no one. We have no one who even knows anything about it. You know, still to this day, I end up in the ER occasionally every couple months and they still,

what is that? You know, what, what do you have? So it's hard. I'm still fighting by myself here. You know what I mean? The Mayo Clinic's so far, so.

Jill Brook: And you went to the Mayo Clinic Jacksonville?

Taylor: No, I went to the Mayo Clinic Rochester?

Jill Brook: Oh, okay. So, so you went to all the way to Minnesota, when there is a Mayo Clinic in Florida.

Taylor: Yeah, they told me that they didn't think that they had the proper stuff there to help me and that the Mayo Clinic in Rochester has the entire list and everything. It's the biggest [00:08:00] one, the original. And they directed me in that direction. So I said, honestly, at this point, I'll do anything to figure out what's wrong with me,

'cause I know I'm not crazy anymore, you know?

Jill Brook: Well, you know, it's funny because I'm having flashbacks to when I went to the Mayo Clinic in Rochester and things shut down real early there. So if you're there for like days or a week, it's like, what do you do after 6:00 PM? And they have the little underground hallways and it was a lot of killing time. But you, but you got answers.

Taylor: Yeah, I did. There was a lot of standby appointments that weren't like scheduled, like I was, I was supposed to be there for like a month because that's how they had my appointments spread out, and it was cheaper to just stay than keep flying back and forth. And so we were just gonna, you know, find something to do.

And so I did like standby appointments, so I would go and sit there and check in and just hope, and there was several days of that and I got really lucky and I was only there for two and a half weeks instead of a month, [00:09:00] so.

Jill Brook: So were you relieved or bummed when you found out you had POTS?

Taylor: Both. I was relieved that I wasn't crazy like everyone was telling me I was. But I was super honestly kind of distraught that it wasn't something that I could just fix, you know what I mean? It wasn't just a easy fix. It's a long process and it still will never be fixed, but it can get better, you know?

But it was both, for sure.

Jill Brook: So, okay, so let's back up a second. So before you got your diagnosis, what, what were you like at your worst in terms of symptoms.

Taylor: At my worst, it was definitely the constant, like every time I tried to do anything like upright, I would struggle so hard, I would feel so faint. Every time I tried to do anything outside, I, that was honestly my hardest thing was just being upright, and being outside. And so being upright is basically everything.

I spent months [00:10:00] in bed like doing absolutely nothing. Quit my job, everything. I did nothing. Not even hang out with friends or anything. I just couldn't, you know.

Jill Brook: Wow.

Taylor: So it was hard. It was just that the dizziness honestly was my hardest thing to get over, 'cause it's not, it was scary too, you know what I mean? I don't know why I feel this way, every time I stand up, you know what I mean?

So it was also, yes, of course there was anxiety into it because I was afraid, you know, that something was gonna happen to me and I didn't know what was gonna happen to me.

Jill Brook: Yeah. Yeah. So once you had a diagnosis and some answers, what did you try? What helped and how much better did it make you?

Taylor: So right after I got the diagnosis, I tried some different medications like beta blockers and whatnot. It did not help for me just because it made my blood pressure so low and whatnot. So I actually struggled more. And so I tried the whole salt, compression thing. I will tell you it is very difficult to wear [00:11:00] compression garments in Florida outside because it is hot and you're already, you know, sensitive to the heat and now you have this stuff restricting you and you just feel so like claustrophobic and sticky and gross.

Jill Brook: So I never had to spend too much time in southern Florida with compression stockings on, but I did in Southern California. And yeah, there were times where I remember just like walking into the ocean because I was gonna lose my mind or pass out and I, or there were times when I would just walk into a stream or a pond and that was just like the only thing I could do because you'd get so hot in those stupid things.

Taylor: I know. It's, it's hard. It's really hard. So I tried that and then, it didn't make a huge difference. It just kind of depended on the day, honestly. And I'm kind of a claustrophobic person, so like, I don't like elevators and stuff like that, so I felt very like, just kind of yucky in 'em. I tried the salt.

The salt seems to make a difference. Depends on the day, honestly. And I drank a [00:12:00] lot of water. I would like to say that makes a difference. I think that the salt without the water will make me feel miserable because now I'm just dumping salt into my body with no liquid intake and that, that's hard.

But if I find the perfect medium, it's definitely, it definitely helps. I've tried a lot of things and honestly to this day I'm still yet to find anything that helps, unfortunately. But I think that there's more problems that I have to figure out, as far as like health wise. I was recently diagnosed with like gastroparesis and hypermobile Ehler-Danlos Syndrome, so I still have a lot to work on in that.

And I think maybe if I work on those two things it might help my symptoms.

Jill Brook: Okay. Yeah, sometimes POTS is like the gateway diagnosis, huh?

Taylor: Yeah. It's just the first page of the book, you know?

Jill Brook: Yeah. Yeah. So what does your life look like now? Like maybe is it a little bit better, 'cause at least now you know [00:13:00] what it is and you know, you know you have less fear than before maybe 'cause you know what it is, or is it just the same?

Taylor: It depends on the day, but in the past six months probably it's been harder, I think, honestly, like I said, it's the heat. The heat has been terrible here. Today the heat index was 110 degrees and, even that inside it makes a difference. So I think it's been harder recently. Still not really working.

I work from home, which is good. I'm blessed to be able to do that. But I still don't drive and I still don't, not until I feel like I can find something that helps me enough to be, you know, in a car responsible, like, you know, I'm responsible for the car and me, and so all those things, you know.

But it's been a little bit better in the sense of like, I think mentally for sure, it's better. In the fact that I, I was brainwashed a lot unfortunately, and I really did take a toll on my mental [00:14:00] health because I just,

I believe them. So definitely I've been happier in a sense of, you know, you stood up for yourself, you advocated for yourself, you know, you got rid of so many doctors and I probably was, you know, not a nice person at the time, but I didn't have time to waste around and I wasn't gonna play games with all these doctors.

So I just, bye, you know, next. So I definitely mentally, for sure am better.

Jill Brook: Oh, that's good. Can I ask what it's like to have gastroparesis?

Taylor: Not very fun. It's very hard in a sense of like, you know, we all have our taste bud palettes in mine has been like a 5-year-old my whole life. So unfortunately all those foods that I love to eat are really hard on my, on my stomach. And I've lost 40 pounds and have not been able to gain it back in four months now.

So hopefully these next steps won't be too terrible. But unfortunately the medication that they always recommend to help the gastroparesis, [00:15:00] one of its biggest side effects is really bad anxiety. I'm not the type of person that can be on that medication because I already have it, you know? So it's basically diet, you know, and with the hypoglycemia, when, when I have a gastroparesis flare that's really bad, I end up in the hospital on IVs and, and sugar bags because my stomach can't digest anything.

So I'm not getting any nutrients . So it's really hard in that sense. I've ended up in the hospital quite a few times in flares. It's hard. Definitely. I don't wanna say it's harder than the POTS, honestly, because, you know, I think the POTS is extremely hard to deal with.

But it's definitely runner up for me.

Jill Brook: Yeah. Do you still have more things to try like in terms of POTS, medications?

Taylor: In POTS medications, they don't really want me to try anything until the gastroparesis is under control because I could be getting really bad side effects from the medications because of the gastroparesis, because everything's just sitting in my stomach and [00:16:00] I am the type of person that gets every side effect on medicine bottles, unfortunately, and I have my whole life. Even like cold medicine, the only thing I take is children's Tylenol. That's the only thing I can take. So I think once they, they said once they get the gastroparesis maybe under control, it will be different with the medication for POTS.

Jill Brook: So how has this changed you as a person?

Taylor: It's definitely made me like more grateful for like the little things in life now that, you know, for the past few years I haven't been able to do like, the big things in life, you know, like, and so I'm really grateful for, you know, the people I found out who was really close to me, like who actually cared, who actually, you know, mattered. And, I just, I became very grateful for everything, you know. Little things that we used to take for granted, like a shower. You know, like the shower, the shower is probably the hardest thing for me to do. And I miss, you know, back when I, I sometimes I'd be like, I don't even [00:17:00] want a shower, but I would die for just a normal good shower where I can stand the whole time and do a whole, you know, the whole thing.

But it's, I can't anymore. So it's like little things like that where I've learned to be grateful for all those like little small things and never take 'em for granted 'cause you never know when everything can be taken away before you, you know, you would ever even know, or expect.

Jill Brook: Yeah. What's the best support that people can give you nowadays?

Taylor: Honestly, just listening. I never expect for like, you know, people in my life to be able to necessarily help me. There's help along the lines of like, you know, helping around the house or helping, but when it comes to like how I'm feeling, I just like when people listen, you know, listen to how I feel, how, like, you know, when I'm having a really bad flare sometimes I just like to talk about how I feel. Like, what am I feeling inside my body. But I'm not looking for anything in return. I'm just looking [00:18:00] to, you know, vent and talk about it and maybe it'll, you know, start to calm down and stuff like that. So, honestly, like listening and little things like, you know, picking up around the house and helping me clean or take care of the animals.

All those things like are extremely helpful since I, there's some days where I can't do anything at all, so, you know.

Jill Brook: Yeah, let's come back to your Bernese Mountain dog. What are you training it to do?

Taylor: Okay, so Milo's getting trained. His first thing is gonna be the hypoglycemia. That's probably one our biggest thing, just because you can't rely on these sensors, unfortunately. They'll tell you you're low when you're not, and they'll tell you you're normal when you're not. And so they're, they can be very unreliable and I've had a lot of experiences where I've relied on it too much and have regretted it.

So he's gonna learn to, or he's learning to read the blood sugar. He's learning to do deep compression therapy, so when I feel like faint, you know, he'll be able to lay over like my waist area to help get the blood [00:19:00] back up to my head. And then he's also gonna learn how to it's kind of hard to explain, but like, if I was standing and walking and all of a sudden I felt really dizzy, he will like, lean up against me and I will lean up against him so he can keep me up and stable.

So those are the three biggest. Oh, and then retrieving, he's gonna know how to retrieve, so if I drop something on the floor, he'll be able to pick it up for me and all that. So those are the four biggest things.

Jill Brook: Oh, how old he and how is he doing?

Taylor: He's 10 months old. He's doing really well.

He's very smart. He can be lazy, so we're working on that. But those dogs are known to be lazy sometimes. He's doing really well. So I'm happy. I'm happy with him for sure.

Jill Brook: Oh, those are such sweet dogs.

Taylor: Yeah.

Jill Brook: Aw. And does he sleep in your room?

Taylor: Oh yeah, he sleeps in my bed, takes up the whole bed. The whole bed 'cause he is 90 pounds at 10 months old. So he's a big boy.

Jill Brook: Oh my gosh. So can we ask like, so what does your social life look like right now? Have you found any ways to [00:20:00] sort of create social life?

Taylor: Yeah, so I mean, I have like a group of friends that I've had, you know, since school and all that good stuff. Unfortunately I don't go out. But I do socialize a lot on like Facebook groups like POTS groups and stuff like that. And there's EDS groups and then there's gastroparesis groups even and all that.

So I socialize on there a little bit. Obviously it's kind of different than like making friends. We kind of just, you know, chit chat about our problems. But so basically my, most of my social life is just the group of friends that I've had since school.

Jill Brook: So what helps you cope with all this?

Taylor: Honestly writing about it, reading about it and talking about it are the biggest ways for me to cope. I like to share my experience 'cause I remember being that person that felt so helpless and so lonely. So I like to share my story. I like to write about my story, because I know there's so many people out there who feel so lost and confused and are getting diagnosed with things [00:21:00] that aren't even close to what their problem is, you know?

And so I, I get a lot of like, I don't even know the word, I get a lot of like, good feeling out of just helping other people, even though I'm not in a great place, but I feel better helping people. So, you know, it's basically writing, reading, and talking about it.

Jill Brook: Is there anything that you know about living with POTS now that you wish you had known sooner?

Taylor: Ooh, that's a good question. I mean, I did a lot of research right when I found out. I wish, I guess I wish I would've known how hard, like normal daily life tasks are because it's kind of like, oh, you know, just, you can't really exercise too much or, and you can't really, you know, be out in the heat for too long. But what about when I'm in my house and it's cold and I just stand up from laying down on the couch and then I'm like, whoa.

You know what I mean? I, I think it's kind of, the doctors, at least when they tell you, they make it seem like, oh, if you just drink a [00:22:00] lot of water and eat a lot of salt, you're gonna be perfect. That's what I was under the impression of when I initially, you know, was sitting there talking with them.

But then once time progressed and unfortunately got worse after I left there, but it, I was like, that's not, does not work. You know what I mean? That's not working for me. So I wish it kind of would've, you know, been talked about a little bit more about what could happen, what are the possibilities, you know, all that stuff.

Jill Brook: Yeah. So has this taught you any life lessons, would you say?

Taylor: Kind of like what I mentioned earlier is like, be grateful for the little things. And I guess like never take your health for granted because I never would've ever imagined that I'd be in the place that I am now, 'cause I was always extremely healthy. You know, I was very active and all those things, and I never, ever, ever would've expected this.

And I feel like a lot of people take that for granted in the time. And I'm sure I did too when I was young, you know. I'm sure, [00:23:00] you know, before all this. But now it's, you know, it's important I feel like to, you know, do the things that you enjoy because I guess you never know when anything could change to where you could never do that again.

Jill Brook: What's your favorite activity to do now?

Taylor: Probably. To color and to read. I've really started to enjoy those, those two things. Just because, you know, it's not body, it doesn't require anything to make me feel bad. And a lot of times I'll color when my mind is very, like having all crazy thoughts about how I'm feeling in the moment, you know what I mean?

So those are probably the two, my two top things that I've, and I've learned to like to shop because, you know, shop online because what else am I supposed to do? I'm not gonna go walk around a grocery store for two hours. I'm gonna just order online, you know.

Jill Brook: What do you miss the most about pre POTS life?

Taylor: The freedom, honestly. Like, I feel like I'm [00:24:00] being held hostage by something, you know what I mean? I miss driving, especially because even just driving to, you know, go to eat or driving to go see my parents or anything like that. And that's probably the thing I miss the most. That and being able to be outside.

Jill Brook: Has there been anything positive to come of all this? Any silver linings?

Taylor: I think everything's meant to happen for a reason. That's kind of how I always thought. And maybe this is protecting me from something else, you know, that could have happened or protecting me from something that I don't quite see, you know what I mean? Even though it doesn't feel like it. But you know, there's always a possibility.

I just feel like, I feel like you're never given something that you can't get through as a person. And we're all different. So we're all given different obstacles and different things to face. And so I think maybe it's just, you know, we're all given different things and we learn to become strong enough to get through it, and here I am.

Jill Brook: That's, that's great. [00:25:00] In fact, we had a listener request that we ask about any victories you might have to tell us about, in terms of POTS, along the way.

Taylor: Honestly, probably not. There, I, I mean, my life has gone completely upside down to the point where sometimes I don't even recognize my life or, you know, and stuff like that. So I would say honestly, no. Not as of right now, but I'm confident that in the future there will be many victories. Just, we're just not there yet.

Jill Brook: Yeah, what is it they say that like every hero has an origin story and it's the hardship that makes them strong and tough and wise and all that stuff. So maybe that's the part.

Taylor: Good things take time. So I'm just, you know, waiting on the waiting game right now.

Jill Brook: That's great. That's great. Are you up for doing a speed round where you just say the first thing that comes to your mind?

Taylor: Sure.

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

Taylor: Oh regular salt, like taking just by mouth.[00:26:00]

Jill Brook: What's the drink you find the most hydrating?

Taylor: Gatorade Zero.

Jill Brook: What is your favorite time of the day and why?

Taylor: First thing in the morning, but before I get outta bed. I just woke up. I feel most of the time I'm like all there, until I stand up. But you know, that first like five, 10 minutes of laying in bed, I feel very like alive.

Jill Brook: Where is your favorite place to spend time and why?

Taylor: On my couch because it's the place I feel safest.

Jill Brook: How many doctors did you see for POTS?

Taylor: Mm, probably between five and 10.

Jill Brook: How many other POTS patients have ever have you ever met in the flesh?

Taylor: Zero.

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

Taylor: Defeating.

Jill Brook: What is some good advice you've heard or try to lift by?

Taylor: Like I said, again, you're, you're, you're [00:27:00] given something because you're strong enough to get through it.

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

Taylor: Small or inexpensive. Ooh, those little ice packs. Those little ice packs.

Jill Brook: Who is somebody that you admire?

Taylor: My husband.

Jill Brook: Do you wanna say why?

Taylor: Because he's been super supportive through this whole thing.

I couldn't have done it without him.

Jill Brook: Yay, husband.

Taylor: Right.

Jill Brook: What would you eat if you had a guarantee your gastroparesis would go away for a day?

Taylor: A lot of pizza, a lot of soda, and a lot of ice cream.

Jill Brook: What is, what is something that you're proud of?

Taylor: I'm proud of sticking up for myself and advocating for myself through this whole process.

Jill Brook: What is the toughest thing about POTS?

Taylor: Everything getting taken away from you when you're least expecting it.

Jill Brook: Do you have any tricks to help you fall asleep?

Taylor: A [00:28:00] fan and noise. I, I fall asleep pretty easy. So that's a, that's a hard question. I'm, I don't have that problem.

Jill Brook: Do you have any tricks to give you energy when you need it?

Taylor: Oh, goodness. I wish there was one. If anyone has 'em, let me know.

Jill Brook: What is a gift that you would have sent to every POTS patient on the whole planet, if you had infinite funds?

Taylor: A service dog.

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

Taylor: My family.

Jill Brook: Can you finish this sentence? I love it when ...

Taylor: I have a good day and I can accomplish all the tasks that I wanna get done.

Jill Brook: I hate it when...

Taylor: I have a bad flare day and I'm stuck in bed all day.

Jill Brook: People might suspect I'm a POTSie when...

Taylor: I'm sitting on the floor with my feet up in a grocery store.

Jill Brook: Ah, leading to the next question. Have you ever had to sit down or lie down in a weird place because of POTS, and if [00:29:00] so, where was the funniest?

Taylor: Ooh. The funniest place was definitely when I just came out of a changing room at a Lululemon store and there was a bunch of people all over and it was just really awkward situation 'cause there was a lot of people in a small area. And then there was me on the floor with my legs up.

Jill Brook: And people are probably wondering. And so, you know, being an extrovert is kind of handy in a situation like that. Can we ask, like, did you say something? Did they say something?

Taylor: Yeah, they said something like, do you need water? Do you need something? And but luckily my husband was like, she's okay, she just has some medical stuff and if she puts her feet up, it will, it will help her feel better quicker. And they were just like, okay, well if you need anything, you know, we have water, we have ice, all this stuff, you know?

And I'm just like, yeah, yeah, yeah. But I can't even think, 'cause in that moment I'm like, you know, it's kind of, honestly, it's like a, a drunk feeling, you don't really, can't sometimes even know where you are in that moment.

Jill Brook: Mm-hmm. Yeah. Okay, so why did you agree to let us [00:30:00] share your story today?

Taylor: Ooh. I feel really big on, like I said earlier too, just like, I listen to all those people's story because it brings me like confidence in some of them that have come a long way. And for the people who are still struggling that I've also listened to, it makes me feel not so alone. So I feel like when we get that good mix or people who are right in the middle, kind of, I would put myself right about in the middle. You know, I'm not down at the bottom, but I'm not doing great. I'm kind of just there. I feel like when we all share where we are in our journeys, it can help, you know, lift other people up, make them feel not alone, give them, you know, advice or give them hope that they will find the answers if they haven't been diagnosed yet.

Jill Brook: Yeah. Yeah. You know, it's, it's sometimes amazing to me that like I'm still trying new things and I'm still finding new answers and new things that help, and I'm like 35 years into this, it's like amazing. So, I mean, I guess that is the bad news [00:31:00] is you might not feel like cured for a long time. But the good news is there's just always so much stuff to try.

Taylor: And they keep coming out with new things and new ways. And even though that terrifies me too, 'cause I'm like, I'm not being a test rat for anything. But you know, at one point in your life, like I kind of am right now is like, honestly, I'll do anything and I'd almost try anything to feel better. You know what I mean?

So I think we all get to that point, though. At first we're like, we can do it without the medicine. We can do it naturally. We can do it this way. And then all of a sudden you're like, I don't think I can.

Jill Brook: Aw. So what do you wish that more people understood about POTS?

Taylor: That we look normal from the outside, but on the inside, you know, there's days that I literally feel like I'm dying. You know what I mean? I think that a lot of people say, well, you look normal. I get a lot of the, not to my face, but I see a lot of stuff on social media where it's just a mental thing.

It comes from a mental standpoint, and I think that's one of the hardest [00:32:00] things to read because there's so much research now, even though there's not enough, but there's still a lot. And it proves that it has nothing to do with your mental state of mind. Yes, it can elevate anxiety or depression because of obviously what we're all going through,

but I think that it's something really hard to hear for some reason to me. And I think that it's just, it's, you know, I just, you know, we look normal and that's hard. I get it. Like, you know, we, I would look at you and I would say, well, she's just, you know, a cute lady and she looks normal, she looks healthy, she looks fine.

And you know, and it's not the truth, you know, at all. It's not anything close to that. So I think that's what I wish more people knew is that just because we look okay, doesn't mean we are okay.

Jill Brook: Yeah. Yeah. Well, Taylor, thank you so much for sharing your story and all of your insights with us, and I know that everybody appreciates it and everybody's pulling for you and Milo, [00:33:00] and we hope you'll keep in touch and let us know how, how that goes.

Taylor: Thank you. Thank you so much for having me.

Jill Brook: Okay, listeners, that's all for today. 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.