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 Laura. Laura, thank you so much for joining us today.
Laura: Hey, thanks for having me.
Jill Brook: So let's start with the basics. Where are you?
Laura: I live just outside of Birmingham, Alabama.
Jill Brook: And how old are you?
Laura: I am 31.
Jill Brook: And do you want to share like who you live with?
Laura: Yes, so currently I live with my dad and my two kids.
Jill Brook: And what would your friends or family say your personality is like?
Laura: So I had to do some research on this and I got some pretty interesting feedback. Um, my, one of my best friends says I am a gregarious chameleon um, [00:01:00] enigmatic um, a force to be reckoned with driven with a great sense of humor and an eye for art and detail very caring, loving, have a big heart.
Jill Brook: Wow. Your friends sound loving and they have good vocabularies. Okay. So tell us what you enjoy doing. What are you passionate about?
Laura: So I love art and photography, reading. I have a big passion for hiking, being outdoors.
Jill Brook: Neat. What kind of art? Anything in particular? Like, do you do art yourself, or do you like just looking at art, or?
Laura: Yes, I, I grew up around art. Just my whole family is very artistic, very creative, and I love photography more than anything. So I do a lot of photography, but I, over the years paint, sketch, I love to write, I love poetry just [00:02:00] all art. I love looking at art.
Jill Brook: Wow, that's fantastic. And that sounds like, photography is a good skill to have if you have young children. Do you get lots of good photos of them?
Laura: Oh yeah, definitely. Definitely. They never know when I'm taking a picture of them. They're like, are you taking a picture of me? And I'm like, yeah. It's art! Let me take a picture!
Jill Brook: So we're wondering if you had a life before POTS and if so, what did that look like, like the year or two up until you found out you had POTS?
Laura: Yes, I was constantly always on the go. I worked in oncology, IV infusion, so I was on my feet a lot. I was constantly researching new places to eat, places to go, places to hike. [00:03:00] I always had plans on the weekends. If I wasn't hanging out with my friends, trying, you know, I'm a big foodie. So I love trying, you know, new restaurants.
Me and the kids, we, I had a goal to hit every park. We were always at the park, jump parks just, just constantly going all the time.
Jill Brook: So what was your first sign that something was wrong?
Laura: So, in October of 2022, it was right at the beginning of October, I got sick. My daughter had come home the week before and, you know, she wasn't feeling too great. And I got sick a week later and I never got better. And by mid November I knew something was seriously wrong. I had woke up that day with vertigo.
And, [00:04:00] every time I turned my head, I basically fainted, the entire day. So, I went to the ER.
Jill Brook: Okay, and how helpful were they?
Laura: Not helpful at all. At this point I had been sick for so long. And, I was telling them all these symptoms. I'm like, I am having these migraines. I'm having memory loss. I'm having brain fog. I can't remember what's happening. I'm having pins and needles in my hands and feet. I'm having vertigo.
And all, of course, all the lab work came back great. And even when I had stood up, they wanted to do like a makeshift, like, orthostatic orthostatic on me, and I fell on the nurse, and she she was trying to check my blood [00:05:00] pressure, and she's like, are you sure you don't want to sit down, and I was like, we need,
we need this data. We, we have to push through it. I need to know and by the end of my visit, they sent me on my way and say, do you really need to see a neurologist?
Jill Brook: Did you ever find out what the sickness was? Like, was it COVID or was it something else?
Laura: I believe we believe it was COVID. And at that point, it was not like the COVID I had before, which they call old COVID it was just, you know, sniffles, runny nose. Like, I was still going to work.
It wasn't, you know, the really bad fatigue in the beginning. It wasn't really bad fatigue and the migraines and all that.
Jill Brook: And so, what happened next then? Did you go and see a neurologist like they recommended?
Laura: Yes, so I went to my primary doctor. And she [00:06:00] first set me up, wanted me to see a cardiologist and I was, you know, that was not helpful at all, unfortunately. I know a cardiologist is great for some POTS patients, but it was not in my case. So it wasn't until May of that next year that I was able to get in to see a neurologist.
Jill Brook: And did that lead to answers for you?
Laura: It definitely did. I am really big on doing my research, so I had really collected all the data, time points, everything that had happened to me in those months waiting up to see the neurologist. And at that point, I had already pre made my diagnosis that I had POTS. It was very clear to me. So, they ordered the tilt table test for me, and that's when I got diagnosed.
But the tilt [00:07:00] table test wasn't until, I think, six months later after I saw the neurologist, because the autonomic testing lab in Birmingham is so backed up and I want to say it's the only autonomic testing lab in the area, if not the whole state.
Jill Brook: Yeah. So at long last though you got this testing done and you got a diagnosis and did that allow you to get access to treatments that helped a whole lot or how much did you improve from having a diagnosis?
Laura: Yeah, and I want to say just knowing that I had POTS, for sure just having that peace of mind that like, okay, I'm not crazy, I knew something was wrong has helped me tremendously because I don't feel like I'm in, I'm fighting an invisible battle. All of the, any of the medications that I have taken, which [00:08:00] I'm still in the process of trying different things, have not been helpful thus far.
I've taken one beta blocker and it made my heart rate amazing and the bad thing is it calmed me down so much to the point I felt very fatigued.
Jill Brook: Okay, so you're just continuing to try.
Laura: Yes, yes.
Jill Brook: So I know that as we've been talking, your heart rate has been doing some funky things. Can we ask where your heart rate normally is and what it gets to if you're, say, public speaking or doing something like that?
Laura: Yeah, I am not a fan of public speaking, so, this this makes me very anxious and my heart rate will get up to like 115, 120. Typically typically my heart rate is generally high. It's usually in the 90s. You know, [00:09:00] just sitting. I get super excited when I actually lay down and it's, it's 75. I'm like, I feel fantastic.
Jill Brook: So I'm sorry that you haven't found treatments yet that are making a big difference, but does that mean that you've had to change your lifestyle? Like, what's different? in your life now versus before you had POTS?
Laura: So I did some deep diving one night because I felt so bad. My fatigue can get to the point where I can't drive. It is, it's, it's pretty, it can be pretty debilitating. So I, I did dive one night just in, almost enraged. I'm just like, I just want to, I just don't want to do this anymore. And I guess some of the latest
research that has come out is that working out can possibly put you into remission. And it's easier said than done when you live with a chronic illness that [00:10:00] causes workout intolerance. I am extremely grateful that on my good days and when I do have energy, I can do a light workout. So I kind of sat on the information probably three months before the new year and I decided, okay, I, I want, I want to try this.
I want to do this. And I started out the new year working out every morning, drinking water, just, trying to eat more protein and I can't say every day has been absolutely amazing because sometimes I'll work out my heart rate will get up to 173 and I'm like, I gotta sit down. But I feel like I it has made a big difference and also I kind of wanted to go into this year,
I kind of took [00:11:00] last year to be very sedentary and I feel like I was almost grieving, grieving my old life and like really trying to figure out okay what happens if I don't meet somebody and what happens if I get worse and there's nobody here because I am a single mom and, so I, I took that time and I really just grieved that life and decided, you know, I'm just going to do this for me, I'm going to take care of myself and take care of my health and I am doing things I feel like can reset my nervous system.
So, one of the things that I do is I wake up early and I play like orchestra music, piano music. Just something very calming, very soft and I will get out and I'll get my journal out and I'll journal just, you know, how I'm feeling, you know, what's going on that week, just kind of collect all my thoughts and it has, I feel like starting my days out like [00:12:00] that and then going just very calm and then going into a workout and just like really, you know, trying to get my, my energy level up has been, it's, it's really been helpful for me.
Jill Brook: Nice! And if you had to like put a percentage on it, how much better do you think you are now?
Laura: Oh, man, I. It's so, it's so hard to even say from, like, where I started in the beginning, because where I was in the beginning was so terrifying. If I was scaling it from where I started out in the beginning, I would have to say 80%. 80%. A lot of what helped me too was removing external and internal stress, stressors, like really, really having to, you know, know what my, my limit is on things and not take on, because I was taking on so [00:13:00] much up until I got sick.
It was unreal. I was, I took on a lot. And I mean, I feel like that is, that was one of the reasons I crashed because I, I had so much on my plate. My immune, my immune system was completely depleted. I wasn't eating. I wasn't sleeping. I was going through a lot at that time. Like, I really did not have a chance
to not get POTS, like it was the inevitable for me.
Jill Brook: Oh, man. Are your kids old enough to notice and what have you told them about POTS?
Laura: So, yes my son is nine and my daughter is seven. And in the beginning, it was, very frightening and I didn't know what to tell them and I was constantly having to tell them, you know, I just don't feel good I'm sick. I don't feel good. I you know, I can't get up like [00:14:00] yeah, and they I'm I'm just one of those people that overdo it, you know, and I was always like doing everything for the kids, you know, it's almost like I wouldn't even, you know, I wouldn't even let them move.
It's just like I, I can, I'm such a caretaker too. I, I, I really enjoy taking care of people and I'm just, I'm like that as a mother too. So, when I got my diagnosis I told them, you know, the best, the best way I could explain it to them was that I had a, a heart condition. It's, you know, they're, you know, they're little kids, so explaining all the big terminologies,
a little bit tougher. But they were very scared at first, but now they know that mom's okay. And they have gotten a little bit more independent about things. And they, they take care of me. And honestly, I'm okay if I have a flare up because we do family movie night. So we all file up on [00:15:00] the couch and we watch movies together.
And those are actually our favorite times. I really enjoy, I really enjoy that.
Jill Brook: That's great! So you've made lemonade out of your lemons? Every time you flare, it turns into a fun movie night.
Laura: Yeah, yeah, we do the whole popcorn and we get blankets and pillows and we always we always, we either find a new movie or mom gets to find a good kids movie from the 90s and those are always questionable to them, like, is this really going to be funny?
Jill Brook: That's fantastic!
Laura: So we have theme nights, too.
We'll pick, we'll pick certain movies.
Jill Brook: And so do you think that having POTS has changed you at all as a person?
Laura: I do I do, to the point I feel like I can appreciate, I can appreciate the small things coming from where I came from. I can really, I feel like I have a [00:16:00] new appreciation for life in general.
Jill Brook: And it sounds like you have really supportive friends.
Laura: Yes I, my, my friend, actually, I didn't even know what POTS was, but at one point her doctor thought that she may have had POTS. And she in the beginning, she told me, she's like, I think, I think you might have POTS, and I was like, what is that? She's like, doctor thought that I had it, and throughout the entire duration of me trying to get up to a diagnosis, and even now, she never doubted me one second.
She was, I felt like she was the only person that really was like, she really validated me. And she was there for me. I mean, I, I don't like being vulnerable, but she would let me call her like crying, saying, I can't, like, my memory is lapsing by the second. I can't [00:17:00] remember what's happening. And she's like, it's okay.
And then when I'm coming to, I'm like, I'm sorry I called you crying. And she's like, it's fine. You know, she just really, she really validated me through the whole process. And she, she's absolutely amazing.
Jill Brook: So that does sound scary. You're saying that your memory would be so bad that you couldn't remember what was happening, like, moment to moment?
Laura: Yes and I feel like that might be part of the brain fog. I'm not totally sure. In the beginning when this was happening, and I'm sure a lot of it was the, they, the doctors think that I, it's, it's very likely I had Long COVID because the cold and the cough did not stop until February of 2023, and I got sick beginning of October 2022, but in the beginning, I thought that I had a brain tumor, like, it was,
it was awful. I couldn't [00:18:00] remember what I was saying or what I was doing minute by minute, and sometimes if I get extremely fatigued, the brain fog will make me, you know, it will make me forget what I'm doing and what I'm saying.
Jill Brook: Yeah, wow. So what would you say is the toughest thing about living with POTS?
Laura: For me, it's the fatigue having to cancel plans not knowing how things are going to turn out up to making plans or arranging anything. I just got back from San Diego on a work trip, and the weeks really the couple of months leading up to this trip, I was extremely anxious because this was my first time flying since my diagnosis, and I was, you know, traveling with co workers.
It's not like I was traveling with family or friends, you know, these are people who [00:19:00] are you know, acquaintances to me, which really great group of people, but I didn't know what was going to happen up in the flight and all the entire trip. I'm like, what if I'm around my co workers and I, and I pass out or but it, it turns out they, they were really great through the whole thing.
So it's, it's really just the not knowing when, or sometimes it's the why.
Jill Brook: Right. Right. Is there anything that you know about POTS now that you wish you had known sooner?
Laura: The adrenaline rushes, the adrenaline surges. And I had started getting these and I didn't know what was happening. And for me, my face would flush out and I would get light tremors and I, I [00:20:00] did not know, I did not know what was happening to me. My heart rate would get extremely high but my mind would be almost calm, but my body felt like it was in danger. I mean I'd be sweating profusely. I wish that I would have known a lot sooner and I honestly didn't learn about adrenaline surges until a few months ago.
Jill Brook: Does it sound fun to do a speed round where you just say the first thing that comes to your poor, oxygen deprived brain?
Laura: Absolutely, let's do it. Let's do it.
Jill Brook: Okay, so this is for comic enjoyment as much as anything else.
Laura: Okay.
Jill Brook: Speed round. First thing that comes to mind. What is your favorite way to get salt?
Laura: Squash.
Jill Brook: Squash!
Laura: 100%. I love squash. I will boil squash and pour all the [00:21:00] salt on it. Is my southern accent coming out?
Jill Brook: That's so funny because that sounded so good to me and I just made that yesterday and again today and I threw it out both times because I hated it so much and I was like, oh my gosh, I can't believe squash is this terrible. I thought I liked it. Anyway, maybe I just wasn't doing it right. Okay, next question.
Speed round. What's the drink you find the most hydrating?
Laura: Like 100 percent.
Jill Brook: What is your favorite time of the day?
Laura: Mid morning.
Jill Brook: Why?
Laura: Oh, man, like I feel like after I wake up and I have my, I can only have one cup of coffee. I can't have two. But I have that one cup of coffee. And I do my workout, and I'm starting work, and I'm just in that zone, and yeah, mid morning, mid morning is the best.
Jill Brook: [00:22:00] Where is your favorite place to spend time?
Laura: Ooh, I would say, I would say on a, if it's a mountaintop, I'm there.
Jill Brook: Oh
Laura: Being in the mountains, yes, love being in the mountains.
Jill Brook: How many other POTS patients have you ever met face to face in the flesh?
Laura: I have not met any. Where are my people? Honestly, like, I would love to meet somebody else who has POTS, that would be amazing.
Jill Brook: What is one word that describes what it's like living with POTS?
Laura: I work in research, so I would say investigative, very investigative. It's just one big study, one big investigational study.
Jill Brook: That's a good attitude. What is some good advice that you try to live by?
Laura: Some good [00:23:00] advice. I kind of have my own little mantra that I actually created right before I got sick. Strength is what strength does. It does not have a choice.
Jill Brook: Nice.
Laura: So your strength, your strength is going to go as far as it can. Just, it doesn't, everybody's always like, how do you do everything that you do? Because I'm also taking care of my, my dad who had a stroke and two kids on my own with a chronic illness.
And I don't know how you did it, do it, have done it, and it's just, you do, strength just doesn't have a choice. You just do it.
Jill Brook: Wow, that's great advice, yeah. What is something small that brings you comfort or joy?
Laura: Ice cream.
Jill Brook: Who is somebody that you admire?
Laura: [00:24:00] My sister in law. She worked full time, had three kids, and was an amazing wife, is an amazing wife, and was in school full time. And got her degree, and I have just really admired her for years, and I ask her all the time, I don't know how you did it.
Jill Brook: What is your favorite food?
Laura: Cajun.
Jill Brook: What is something that you are proud of?
Laura: My kids, my kids, I have the best kids ever, I really do, I'm not just saying that, because they're my kids, they really are the best kids, and great kids, they're amazing.
Jill Brook: Do you have anything that helps you fall asleep?
Laura: Rain, rain sounds. Rain sounds. I play rain sounds.
Jill Brook: Have
anything that gives you energy when you need it?
Laura: I wish. I mean, I used to drink coffee and be wired, but [00:25:00] if I drink coffee now, I'm just, wired and tired.
Jill Brook: Well, that's why we ask, because everybody's looking for a few tricks. What is a gift that you would have sent to every POTS patient on earth if you had infinite funds?
Laura: Bio Lite. I praise Bio Lite. I tell everybody about Bio Lite. I love Bio Lite so much. There's so much sodium in it and I will drink two of them and feel so amazing. I love it.
Jill Brook: What is something you are grateful for besides BioLite?
Laura: I would say obviously, I'm grateful for my kids. Like, you know, my kids are amazing. I'm actually grateful that, for, for everything that I've, that I've been through and I've just actually learned to appreciate and have, and, and to, to be grateful for, you know, things that you go through in life and where, [00:26:00] where it takes you and figuring out why you went through, why you had to go through it to get to where you are.
Jill Brook: Wow, that's beautiful. That's really beautiful. Well, okay. I just have one question left for you. You you suffered a little bit to do this interview today. I know your heart rate went up high and you don't enjoy public speaking. So why did you decide to let us share your story today?
Laura: I feel like having always being the strong person everywhere to everyone. I've always been very strong and outgoing and ambitious and always on the go and reaching a point where I really needed other people's help and they couldn't understand, you know, how I had gotten to this point and, oh, you know, and I heard, you know, [00:27:00] you're just depressed and you're just going through a lot and it was, it was hard because I was, I was very much alone.
And, and it wasn't because nobody wanted to help, it's just they didn't understand. I didn't understand, you know, what I was going through and nobody else knew how to help or what to do. And I have met other people with different chronic illnesses and, you know, were out smiling and laughing. And, you know, they're also having their own type of flare up.
And we're just watching everybody around us go freely. And we're, we're sitting here struggling, just really smiling to be present with, with everybody. Really put on our best, best face, best foot forward to get out and still try to enjoy life. And I feel like chronic illness, it is, it's so, [00:28:00] it's so invisible to everybody else and people, I feel like people really, people really need to know.
You know, it's not, I didn't call you back or I couldn't show up because I didn't want to be there. Sometimes some people just can't be there, you know, and some, and when people ask for help, you know, especially they don't know what's going on.
Jill Brook: Well, thank you so much, Laura. It's been a lot of fun talking to you and thank you for sharing all of your insights. I know everybody appreciates it and I know that everybody listening wishes you all the best going forward.
Laura: Thank you.
Jill Brook: Okay, listeners, that's all for today, but we'll be back again next week. Until then, thank you for listening, remember you're not alone and please join us again soon.
