E148: POTS Diary with Nicole from Texas, news reporter who got a POTS story on the Today Show

Episode 148 June 24, 2023 00:32:27
E148: POTS Diary with Nicole from Texas, news reporter who got a POTS story on the Today Show
The POTScast
E148: POTS Diary with Nicole from Texas, news reporter who got a POTS story on the Today Show

Jun 24 2023 | 00:32:27


Hosted By

Cathy Pederson Jill Brook

Show Notes

Nicole's career as a news reporter in Anchorage, AK and Raleigh, NC was cut short when she developed POTS. While her symptoms have improved since that time, she is still not able to be upright enough to return to that career. Despite that, she pitched a story on POTS to the Today Show and was aired the following week. Thanks, Nicole, for helping to raise awareness about POTS!

Today Show POTS story: https://www.today.com/video/covid-19-linked-to-crippling-heart-condition-pots-158971973791

You can read the transcript for this episode here: https://tinyurl.com/potscast148

Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!

If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

View Full Transcript

Episode Transcript

POTS Diary with Nicole [00:00:00] Jill Brook: Hello, fellow POTS patients and most appreciated people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries and we are speaking with Nicole. Thank you so much for joining us today, Nicole. [00:00:15] Nicole: Of course. Thank you. I'm glad to be here. [00:00:17] Jill Brook: So let's start with the easy stuff. How old are you? Where are you? Where do you live? [00:00:22] Nicole: I am 28 years old and I live in San Antonio, Texas. [00:00:26] Jill Brook: Okay. And tell us a little bit about you. What, what is the essence of Nicole? [00:00:31] Nicole: Well, I'm a journalist. I just recently moved to San Antonio from Raleigh, North Carolina. That was my last news job. I did recently leave news because of my POTS symptoms. [00:00:44] Jill Brook: Okay. What kinds of journalism did you like doing? [00:00:48] Nicole: All types. I was a general assignment reporter, so pretty much anything that they threw my way, but it's something that I've been really passionate about since I was younger. That's what I studied in school. I went to St. John's University in Queens, New York, and then after that I got my master's degree. And after that I got my first news job all the way in Anchorage Alaska, and I was there for two years before going to Raleigh. Everyone thought I was crazy for going there, but [00:01:15] Jill Brook: Oh, we probably lived there at the same time, then. I moved to Anchorage, Alaska to avoid heat, but then I discovered that I needed some sunlight and so it didn't last. [00:01:27] Nicole: No. Wait. What years were you there? [00:01:30] Jill Brook: From about 2015 till 2019 or 2020. [00:01:35] Nicole: Oh, that's so funny. Did you ever watch the ABC or Fox Local News? [00:01:40] Jill Brook: I'm sure I did. I must have. Oh my gosh. [00:01:43] Nicole: yeah. I anchored there for two years, so it was so fun. I had never been to Alaska when I decided to up and move there, but I loved it and everyone said the same thing. They're like, oh, once you move there, you'll wanna stay here forever. I actually love the cold, but I didn't have my POTS symptoms there, so I don't know how I would do. [00:01:58] Jill Brook: Ah, okay. So you had a life before POTS. Can you tell us a little more about your life before POTS? Like what did you enjoy doing besides journalism? [00:02:07] Nicole: I loved my life before POTS. I grew up in theater. That's what I did my whole life up until high school. Then I went to college. I was really active in college. I interned a lot. I was at NBC for two years. I was a runner. I would run every single day. Then I went to grad school in Italy for a year. I traveled a whole bunch. And then that's when my Alaska journey started. But yeah, I always just had a lot of energy. Honestly, I, now I look back on it and I feel like I took it for granted, but I really did enjoy my life prior to POTS. [00:02:39] Jill Brook: Yeah, you lived a lot of different places and visited a lot of different places, I imagine. Where is your favorite place ever? [00:02:46] Nicole: Rome, Italy for sure. That's where I was in grad school for the year. And yeah, I just fell in love with it. I would love to live there one day full-time. [00:02:55] Jill Brook: Okay. So I'm guessing that two personality traits that you have are adventurousness and ambition, but I don't know, you tell us, what would people say is your personality. [00:03:06] Nicole: Those are definitely two personality traits. I was just told at a young age to dream big, and so growing up and then once I got into the news industry, I was like, oh, I wanna be on the Today Show one day. And not that I thought, oh, I was good enough to be there. I just knew I was gonna try and work as hard as I could to possibly try and be there. So definitely ambitious. But I would say I was always described as being like really bubbly and energetic. Now I'm definitely not as energetic, but I'm hoping I can get back there. [00:03:34] Jill Brook: So what was your first sign that something was going on that turned out to be POTS? [00:03:40] Nicole: So the first time that I started getting my symptoms was early to mid-June. I had just moved to Raleigh in May, and at first I was just really tired. I was more tired than normal and I thought it was weird. I remember complaining to my parents, but other than that I was like, oh, maybe it's just getting used to the new job and the new routine and that sort of thing. But then all of a sudden I woke up one day just feeling the complete worse that I've ever felt. I mean, way worse than I've ever felt ever. My head was pounding, I was nauseous. I could actually like hear my heart beating in my head with each step. I had to hold onto furniture. I was like, what is going on ? But honestly, I didn't like freak out at first. I was just like, oh, maybe it's like the flu or something, or I just have like a bad bug and it lasted four days straight. And by like the third day I was like, oh gosh, this is rough. I obviously, I got tested for covid, got tested for the flu, came back negative. And then after that I just had fatigue, like lasting fatigue, but I didn't have any of those other really terrible symptoms. So I was like, oh, okay. It was a bad bug, I beat it, whatever. And so for several months, except I will say the following month, I did pass out while I was at work in downtown Raleigh. But other than that, that's when I first went to the doctor just to make sure that everything was okay, considering the previous symptoms that I had. And they were like, oh, you're fine. I wear a heart rate monitor. You know? So I just kind of went about my time. I was honestly fine. It wasn't anything lasting. I had more fatigue. I definitely would come home at the end of the day and feeling just wiped out, even though I was doing a lot less than what I was used to doing. And in Anchorage, typically, when you're at a smaller station, you're doing more work. And so at Market 150 in Anchorage, I was reporting, I was producing, and then I was anchoring every night. And I would come home at like 10:30 at night when I'd get off of work and totally feel up to going to the grocery store and cooking a meal and doing a little of laundry and watching some TV , you know, and it was totally fine. Here I would go to shoot one story in the middle of the day for like two hours and come home and edit, and I would just be like horizontal position until it was time to go to bed. So I didn't really know what was going on, but it wasn't really affecting my work yet. I was fine. I wasn't really too concerned. And then the same wave of symptoms that I had in June happened in the following March. And this time they lasted two weeks. I was like, fully straight. Two weeks. I was like, something's wrong. I need to figure out what's going on. So that's when I started going to an array of doctors and that's when my mom eventually was like, let's just go to the Mayo Clinic because I feel like I needed an answer soon. Cuz it just kept going and going and it was really starting to impact my work and just my day-to-day life. [00:06:24] Jill Brook: Yeah, so how long did it take to get an answer then? [00:06:28] Nicole: It actually didn't take that long from when the symptoms started to be constant in March. So it started in March and then I actually got a diagnosis end of April is when I was at the Mayo Clinic. You kind of have to go through a process to like technically apply or request an appointment based on your symptoms and all of that, and I was really surprised that they had an opening to get in in just six weeks. So my mom and I flew up at the end of April. [00:06:56] Jill Brook: And which Mayo Clinic did you go to? [00:06:58] Nicole: The one in Rochester, Minnesota. [00:07:00] Jill Brook: Okay. Okay, great. And what was that process like? And I'm partially asking because I spent a week there once and I realized there is nothing to do in Rochester. [00:07:12] Nicole: Oh yeah, it was, but you know what's so funny? I'm like very picky with my Italian food and I fell in love. I don't know if you went to this Italian restaurant. I wish I remembered the name, but it was so good. And we literally ate there like every day. It was so funny. So I did like their food, but , in terms. , you know, what it was like actually at the center. It was very grueling, I will say. It was a whole week and a half of being pricked and prodded, and I had a gambit of tests. And especially at that time, like right now, I would be able to handle it a little better. But at that time, I wasn't on a beta blocker. I was having a hard time, even just like walking from m y couch to my bathroom, let alone across like a whole medical facility. So my mom had to push me in a wheelchair chair several of the days. So it was very exhausting for someone that was already just feeling so terrible. But I will say I'm definitely glad that I did it. I was able to get an answer a lot sooner than a lot of other people. That's why I really went there is because I was trying to see other specialists and they had waits that were months out. So at least I was able to get a diagnosis and immediately they put me on a beta blocker to lower my heart rate cuz my heart rate was nearing 200 almost every day. And immediately after taking the beta blocker, I feel fortunate that a beta blocker does lower my heart rate. I know there are some POTS patients that, that isn't helpful for them. So definitely happy to have gone and gotten an answer when I did. So then I can start, you know, the process of trying different things to help me feel better. [00:08:39] Jill Brook: And so how much have you improved now that you know what's wrong with you? [00:08:43] Nicole: So if you had asked me about two months ago, I would say that I've hardly improved, minus getting my heart rate down because the beta blocker helped my heart rate, but really nothing else, which in my head didn't make sense to me. I'm like, if my heart rate isn't, you know, reaching 200, why is my fatigue so bad? Why is my brain fog so bad? Why am I nauseous? Why am I lightheaded? So that didn't change and so that's why I ultimately left news. But I would say this past month has been the best month that I've had in the last two years, which is amazing. And, to be honest, I don't know. I mean, I tried a couple different things at once. So one was an anti-inflammatory diet, which I did pretty strict for two months and I did feel a slight change in my energy. I did not see any change in any of my other symptoms, but I did start seeing a change in my energy. But then on top of that, I just found out that I was diagnosed with something else called B V D, which stands for binocular Vision Dysfunction. [00:09:47] Jill Brook: Wait, can you say that a little slower so can catch it? [00:09:49] Nicole: yes. Binocular vision dysfunction also known as B V D. I haven't heard it talked about much in the POTS community. I was already having a hard time driving in Raleigh. And if I had friends that wanted to go and eat dinner or something, I'm like, can we do it by my house or something? So I'd only have to drive a few minutes because on my really bad days, I couldn't drive, but I was managing fine on my okay days to drive, you know, 20 minutes here, 15 minutes there. But over the last like five or so months, it got to the point where I couldn't even do that. I was having a hard time just driving to like my neighborhood grocery store. [00:10:22] Jill Brook: Because you're so dizzy. [00:10:23] Nicole: Yeah, because I was so dizzy. On top of that, when I would go into someplace like a grocery store, I could enter on a day that I'm not too bad, right? On what I would call a decent POTS day, enough to go to the grocery store. I would go into the grocery store. I was in like five minutes. I would be so severely dizzy that I actually had to like, grasp my cart or I had to bend down and act like I was like looking at something on a lower shelf. And I'm like, what's going on? This isn't normal. This isn't what my symptoms that I've dealt with the last two years. And so I started Googling. I'm like, there is there something else going on? And I came across this term BVD. Turns out it's something that you can test for pretty easily. Only certain types of eye doctors are able to do it. There was one in San Antonio that was able to, and I did two different days of testing. Turns out I do have it. Basically, it's a misalignment with your eyes. And so for instance, like in a test that we were doing where you had to line up a you know, cross in a circle, right? Wearing these certain glasses, you're supposed to be able to do it perfectly. And and in my head I thought, oh, this is an easy test. I'm acing this. Turns out the results where I was putting the little cross like an inch to the right of the circle. And yeah, it was bizarre. And so it all really made sense. And basically this is commonly misdiagnosed as ADD, ADHD, MS, anxiety, agoraphobia, all these different things. [00:11:50] Jill Brook: Bad driving, bad parking, [00:11:52] Nicole: exactly. I thought it was just really interesting learning more about B V D and it's pretty common and people don't know about it. And also you could have it and it could not be an issue cuz your body automatically adjusts to it. But if your autonomic nervous system is messed up, it stops adjusting to it. And this could happen because of a brain injury, a stroke, or a neurological condition. So doctors think POTS brought mine on. Long story short, even though this has already been a long story, you can fix the problem by wearing prism glasses. That's what I'm wearing right now, and I've been wearing them now for a little over four weeks, and they have helped immensely. They obviously don't take away all of my POTS symptoms. I still have problems standing for too long. And it doesn't help my fatigue and that sort of thing. But my lightheadedness has decreased immensely. My dizziness has decreased immensely within one week of wearing them, I was able to drive to the grocery store. No problem. So it also, I think it has helped my brain fog. And so when I say brain fog, I know some people say, oh, I like, I don't know where my keys are. But my brain fog is so severe. And I've talked to several people and I don't know if you've experienced this too, where it's like that overwhelming feeling in your brain that's just, it's pressure in your head. It's sinus pressure. It's that like dizziness, drunk feeling. And sometimes it's so severe that like you can't even carry a normal conversation or it's so bad that you can't like watch tv. And that's the point that I was at several days a week. I would be lucky if I didn't, you know, two days a week where I didn't feel that way. And that, to me, that was a good week. And so since wearing the glasses and also since starting the anti-inflammatory diet, I have only had one day of that debilitating brain fog, which used to be my biggest symptom in the last month and a half. So [00:13:34] Jill Brook: that's huge. [00:13:35] Nicole: yeah, so it's pretty crazy. I'm hoping that I stay on this path because to me, Now that the dizziness is solved by this, and then the heart rate is solved by the beta blocker, I'm like functioning a lot better, even if I can't, you know, stand for very long and still have to deal with those other symptoms. Before, I mean, if I was just sitting, I would feel bad. So now I don't feel that way as much. So it's just a huge improvement. [00:13:59] Jill Brook: Oh, wonderful. And so is all of this nice improvement in the right direction part of what keeps you positive? Because for somebody who had such a neat job and so much success and loved to be adventurous, I'm sure that was really tough to decide to give that up. Can you talk about that? [00:14:19] Nicole: It was, it was so hard. I had like tons of sleepless nights and breakdowns that my parents and my boyfriend had to deal with, God bless them. But it was the hardest thing ever and I really felt like for so long, I was like, what am I gonna do? you know, I felt like everything that I had worked for was over that I can't travel anymore. I can't manage being on television and telling people stories and everything that I loved doing. I just had so many dreams for myself and so many more things that I wanted to accomplish. For a while, I was really upset by it. I remember even just like something small like the morning show on like Apple, like I love the morning show and like since I left news, I'm like, I can't watch it. Like it makes me sad . Like it's just, you know, things like that that are silly, but you know, and I'm still dealing with that now. But seeing improvement has helped so much just like mentally over the last month. I'm just so thankful that I've seen this improvement that even if I am not able to get to that place where I can't be a journalist anymore and tell these important stories and everything like that. I'm just grateful to feel better. I feel like it changes your mentality in your priorities a little bit to just be at least like, happy with where you are now, which I wasn't feeling before cause I wasn't seeing any progress. So I feel like that's at least helped me for sure. [00:15:47] Jill Brook: That's great. What is the best kind of support that people can give you right now? [00:15:52] Nicole: I would say grace and understanding. I feel like a lot of people don't understand, obviously, POTS, unless you have it. But it's one of those things that since it's an invisible illness, people don't get it. One of the hardest things I think for people to grasp is the severity of the flares and the crashes after we do something, you know? And so I'm still experiencing that now, even on my like, good month if I go and do something. If I can conserve my energy for like a week and just enough to go to this wedding or this event, or whatever it is, I can do that. But then the next week, you know, or more, I am going to be paying the price for it and I'm going to be struggling again, walking around my house and holding onto my furniture and I'm gonna be nauseous all day. My brain fog's gonna be terrible. And so I feel like people don't get the struggle of the one day to the next of your symptoms changing. And they're confused by that. They're like, oh, but like, can't you go on this weekend trip cuz you know, you said you're starting to feel better and it's like, well, okay, I can feel good on like the one day of the weekend trip and the next day be stuck in the hotel room, which I've done plenty of times. you know what I mean? And then just be at home the following week, not being able to work. I feel like just understanding, you know, even though it's so hard to grasp just kind of how difficult it is day-to-day, and also not knowing what your symptoms are going to be like, or, or how something is going to impact you for the rest of the week or two, you know. [00:17:18] Jill Brook: So it sounds like you've done a really good job with the balancing act of trying to take care of yourself, but also staying in touch with those friends and doing things with them. Do you have any sort of intuition or mental model or little policy about when you decide to go for it? Go out, have fun then pay a price versus conserve your energy? [00:17:41] Nicole: I would say I've actually done a terrible job at seeing my friends. I mean, I'm 28, so everyone's getting married, right? So like in the spring I had two weddings and then I had a class reunion that I actually class president when I was a senior. So I had had to plan this thing and I was like, oh, great. This is the worst timing ever. Luckily, a lot of it, cause I wasn't in the state, this was in Florida, went to the vice president, secretary and treasurer. So that was helpful. But I still had to show up and so like I think it's just one of those things that when I'm home and when I'm not having to go like to a wedding or something, I'm really not doing anything. I'm not going out with my friends. I'm not going out on the weekend. I'm lucky if I go to dinner. I think that's a win for me. If it's a day that I can leave the house and put on makeup and go to dinner, that's a good day for me. So I think just conserving my energy and then if I have to go to something like a life event that I don't wanna miss, like a wedding, I just know that I can't do anything for that week besides work. I can't leave. I'm not gonna be spending hours cooking or something because even that, I'll crash the next day. So I just really try and not overexert myself in any capacity. I try to sleep a lot, hydrate, that sort of thing. And then save my energy. And while I'm there too, like not plan any extra things. I'm not like trying to fit in a bunch of dinners with people that I haven't seen. I just kind of go to the wedding, you know what I mean? And also avoid drinking when I'm at those events cuz that can never be good either. So just kind of hydrate. And then I always plan the following week, like if know that I'm now coming back from this trip. I just don't plan anything for like the week or two in terms of even just a family gathering or something. So I hardly travel now, but when I do, I just make sure to plan accordingly before the trip and after the trip. [00:19:28] Jill Brook: You had been talking about kind of that awful brain fog feeling where you couldn't even watch television, and that sounds really terrible, and I'm so happy that you don't have that nearly as much anymore. But what did you do to cope when times were that bad? [00:19:44] Nicole: I was always a positive person. I was just always that person and there were times where I was like, oh, I cannot deal with this. Well, for one more day. I really felt that way. It's okay for one day, but when I'm on my fourth or fifth day feeling that way and struggling walking around the house and not even feeling up to trying to have a conversation, you know, with my boyfriend or something and really struggling. I can't see how I can live the rest of my life this way. And I would just always try and tell myself, I know that there's a chance that tomorrow will be better. Like there is a chance tomorrow will be better. And even if it didn't, I would tell myself that day and then the next day, and then the next day, and then hopefully there was, you know, there was always a next day that I did feel better. You know, whether that took two weeks, whether that took seven days or if I was lucky and it happened the next day. I feel like I just needed one day of feeling what I felt as a decent day, which didn't even compare to my normal days pre POTS, but just like a baseline decent day was all I needed to like endure another two week stretch of that feeling. So I just tried to tell myself over and over again, like, you're gonna wake up tomorrow and there's a chance that you're going to feel okay. And that's really what got me through it, is just kind of like self-talking like that. [00:21:03] Jill Brook: Can I ask about your boyfriend? Did you know him before POTS? How has that affected him? What does he think POTS is? Does he understand POTS? [00:21:14] Nicole: He does, he has been, honestly, my rock through this whole thing. We've lived together throughout this whole process. I did know him before I had POTS. I always say he met me in my prime and now he's with me at my worst POTS. Especially in those times that we were just talking about, I felt like I was like a shell of myself, you know? And. Honestly, he has been nothing but helpful. I feel so blessed. I feel like it's made our connection stronger. He completely understands, and I always feel bad about complaining, and he never makes me feel bad about complaining, and he does fully get it, and Never puts pressure on me to go out and do things and he understands if I can't even make it to dinner or I can't make it to the grocery store, and things like that. So I honestly just feel really, really fortunate. [00:21:59] Jill Brook: Oh, that's wonderful. That makes me so happy to hear. Have there been any silver linings at all? Any positives that came from all this? [00:22:10] Nicole: I'm still trying to find them, I would say. But if anything, I feel like it showed me who is really in my corner and who's gonna be here, for me and support me when I'm at my lowest. And that's been, my mom, my family, my best friends, and my boyfriend. So I feel like it just really grew those relationships and took them to another level and made me appreciate that support system so much. [00:22:33] Jill Brook: Wonderful. Are you up for doing a speed round where we just ask you to say the first thing that comes to your mind? [00:22:40] Nicole: Yes. [00:22:41] Jill Brook: Awesome. What is your favorite way to get salt? [00:22:45] Nicole: Vitassium salt tablets. [00:22:47] Jill Brook: You are the only person I know that actually likes those. [00:22:51] Nicole: I like the capsules, like, not the ones that you actually chew, you know what I mean? It's like the ones you swallow. [00:22:56] Jill Brook: Okay. Okay. No, that's great. [00:22:59] Nicole: I don't know. Like I'm one of those people, I'd rather just get it in pill form. I don't wanna taste it like, you know. [00:23:04] Jill Brook: Be done with it. Efficient. What drink do you find the most hydrating? [00:23:09] Nicole: celery juice. [00:23:10] Jill Brook: Oh, what is your favorite time of day and why? [00:23:15] Nicole: I would say nighttime because I tend to have more energy in the evenings. And then I get to go to sleep and I'm like, who doesn't love that? [00:23:24] Jill Brook: Where is your favorite place to spend time and why? [00:23:28] Nicole: I would say at home, just cuz I'm, you know, comfortable here. I got all my water, my dog's here. [00:23:33] Jill Brook: How many other POTS patients have you ever met face to? [00:23:37] Nicole: One except when I met her, she didn't have POTS. We've reconnected since she's a mutual friend that I actually only met a couple times when I was like 12. But she lives in New Jersey, but that still counts, I think. [00:23:50] Jill Brook: Yeah. Okay. What is one word that describes what it's like living with a chronic illness? [00:23:57] Nicole: terrible. [00:23:58] Jill Brook: What is some good advice that anyone ever gave you about anything? [00:24:02] Nicole: What is meant for you will not pass you. [00:24:06] Jill Brook: Hmm. What is something small or inexpensive that brings you comfort or joy? [00:24:12] Nicole: My dog named Togo. [00:24:15] Jill Brook: Who is somebody that you admire? [00:24:17] Nicole: My mom, she is the world's best mom and I am so grateful for her. I love her so much and she's just been so helpful my whole life, but especially now throughout this whole journey, always been super supportive and helpful and understanding, and I just feel really blessed to have her as my mom. [00:24:35] Jill Brook: Oh, yay. Thanks Mom. What is the toughest thing about POTS? [00:24:40] Nicole: I think the toughest thing about POTS is just the symptoms, then the day-to-day struggle of those symptoms and not knowing if you're gonna wake up and have an okay day, or you're gonna wake up and have a miserable day, where you're kind of couch ridden. So I think that's the toughest part. [00:24:57] Jill Brook: do you find anything effective for helping you fall asleep? [00:25:01] Nicole: I typically don't usually have an issue sleeping, which I know a lot of POTS patients do. So I feel really grateful for that. But I do love drinking chamomile tea before bed. I do feel like that is helpful. [00:25:11] Jill Brook: do you have anything that helps give you energy when you need it? [00:25:14] Nicole: No, but I will say that I just recently tried, I don't know if you've seen it before, but where you like dunk your whole head in like a bowl of ice water. Have you seen that? I have done it a few times and I feel like it works. I mean, it doesn't work long-term, but if you need to wake up and feel energized for the next hour, I feel like it works. [00:25:32] Jill Brook: so that's funny because I do that when I wanna relax because I know it as the mammalian dive reflex that's supposed to kind of like calm me down. But I could see where if the water's cold enough, it would... [00:25:45] Nicole: oh yeah. I make it really cold. [00:25:46] Jill Brook: What is a gift that you would have sent to every POTS patient on earth if you had infinite funds? [00:25:53] Nicole: Probably fuzzy socks. I don't know about you, but my like, extremities are always freezing. So I would say fuzzy socks, [00:26:01] Jill Brook: what is something you are grateful for? [00:26:04] Nicole: My support system, for sure. [00:26:06] Jill Brook: Okay, I'm gonna ask if you can finish some sentences. I love it when... [00:26:12] Nicole: I have a good day, a good POTS symptom day. [00:26:17] Jill Brook: I hate it when... [00:26:19] Nicole: I have a terrible POTS POTS symptom day, and when I struggle, you know, just walking around my house. [00:26:25] Jill Brook: People might suspect I'm a POTSie when... [00:26:28] Nicole: I have to sit down randomly in places. [00:26:33] Jill Brook: That's my next question. Have you ever had to sit down or lie down in a weird place because of POTS, and if so, what's the weirdest? [00:26:42] Nicole: Yes, for sure. I had to do that a lot actually, when I was still trying to juggle news reporting in POTS. I would have to sit down all the time during my stories, but recently I've had to sit down at the grocery store and the post office. [00:26:53] Jill Brook: Ah. Okay. I just have a couple more questions. What do you wish more people knew about POTS? [00:27:00] Nicole: I wish they understood just how severe and how bad it can be. I feel like a lot of people think it's just a heart rate issue and some people do have a really mild form of POTS, but you know, there's POTS patients in wheelchairs and feel so fortunate that I'm not at that point. But I even have a cane here that I use some days. I would just love people obviously to know about POTS in general. And then just understand that, you know, even if we look okay that we're really struggling, you know, I'm someone who is just being a news reporter. I'll have like a full face of makeup on and my hair curled to walk around and, but even while I was in Raleigh and have a smile on my face and feeling absolutely miserable. Like the worst I've ever felt in my entire life. And you just wouldn't know it. So I feel like that's just one of the hardest, hardest things. [00:27:50] Jill Brook: As somebody who's doing somewhat better now than you were doing at your lowest point, do you have like a pep talk you would give that self the version of yourself that is laying down, unable to do anything, has all that terrible brain fog, can't talk, can't walk. What would your current self say to that self? [00:28:12] Nicole: I would tell her that as long as you keep advocating for yourself and not give up on finding answers and trying out different treatments that you can find a way to maybe not even if it's, you know, heal completely, but get to a point to where you're just functioning just better as a whole. Even just now, I would still consider my symptoms to be, you know, pretty, pretty bad a lot of the days it's so much better than what it was, and it's only been in a matter of a month and a half. So I'm just praying that it stays this way and that I continue to see more progress. And I just hope more people can see that a, a big change can happen just in a matter of weeks, just from finding something out or testing something new and things like that. So I would like to just remind people to not give up hope for Sure. [00:29:07] Jill Brook: So you had a story about POTS get onto the Today Show, and I don't think our listeners know about that. Can you talk about that? [00:29:16] Nicole: Yes, yes. So I, shortly after leaving news in Raleigh, I already missed writing and journalism. So I figured maybe I should just write a story about POTS and I started writing it. I honestly wasn't sure that I would ever get published anywhere. I was really kind of second guessing whether or not any news outlet or organization would want to run it, but I pitched it to the Today Show and a week later they ran it. So yeah, I was honestly really surprised and happy and grateful that they were able to get more awareness for POTS for sure. [00:29:49] Jill Brook: And if anybody wanted to go see that story, is there a place they can find it online? [00:29:55] Nicole: Yes. So I have it on my website and on my social media. But also if you just Google Today show POTS, it should just pop up. [00:30:05] Jill Brook: Okay, excellent. And if someone did wanna look into your social media or your work, what's your website? [00:30:10] Nicole: So my website is NicoleOHara.Com. That's O H A R a.com. And then my Instagram handles are on Nicole c O'Hara. That's my middle initial. [00:30:24] Jill Brook: Last question. Why did you agree to let us share your story today? [00:30:29] Nicole: Because I just wanted to bring more awareness to POTS. I feel like it's really important for more people to hear about it and also hear about other people's experiences and how they could possibly help other POTS patients out there that are, you know, looking for mutual support and to help each other find answers to hopefully one day feel better. [00:30:49] Jill Brook: Yeah. Well, Nicole, thank you so much for sharing your story and your insights with us. We really appreciate that and your work to raise awareness, and I know that everybody listening is wishing you all the best going forward. So thanks a million. [00:31:03] Nicole: Thank you so much. I really appreciate it. [00:31:06] Jill Brook: And hey listeners, I 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.

Other Episodes

Episode 62

May 24, 2022 00:25:27
Episode Cover

E62: POTS Diary with Patty from Massachusetts

Patty is a respiratory therapist who first developed POTS symptoms in her 50s. Big changes ensued - new job, moving to an apartment, and...


Episode 122

March 07, 2023 00:38:04
Episode Cover

E122: Mast Cell Matters: Diagnosis and Treatment of MCAS with Dr. Tania Dempsey

Dr. Dempsey shares her experience in both diagnosing and treating people with MCAS. She always looks for POTS and orthostatic symptoms during diagnosis, as...


Episode 24

November 09, 2021 00:41:16
Episode Cover

E24: POTS Diary with POTSpouse Mike B. from California

We hope you enjoy this charming episode where Jill interviews her husband, Mike, about his experience dealing with her chronic illness. His support and...