E111: POTS Diary with Allison from Ohio, a nurse whose POTS got worse with concussion

Episode 111 January 21, 2023 00:34:09
E111: POTS Diary with Allison from Ohio, a nurse whose POTS got worse with concussion
The POTScast
E111: POTS Diary with Allison from Ohio, a nurse whose POTS got worse with concussion

Jan 21 2023 | 00:34:09

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Hosted By

Cathy Pederson Jill Brook

Show Notes

Meet Allison, a long-time POTSie who gives back to the community through nursing. After a concussion, she changed specialties which is a better fit for her symptoms. Using MyChart to communicate with practitioners is a great tip! Thanks, Allison!

You can read the transcript for this episode here: https://tinyurl.com/potscast111

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Episode Transcript

Full Episode Jill Brook: Hello, fellow POTS patients and beloved people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries where we get to hear the tales of others in our community. Today we are speaking with Allie, who has kindly volunteered to be here. Thank you, Allie, for joining us. Allie: Thank you so much for having me. I'm so excited to be here. Jill Brook: Well, we're excited to get to know you. For starters, where are you? Allie: I am in Columbus, Ohio. I'm originally from Springfield, Ohio, and then I moved here after college. Jill Brook: So what is Columbus, Ohio like and what is it known for, if anything? Allie: I live in a suburb, so I get the best of both worlds. I get a little bit of the city when I wanna go downtown, but then I'm also very close to a Target, which is, you know, all I really want in life. A lot of people know us as the Ohio State Buckeye. We're the capital of the state, so we've got all kinds of stuff going on here. Yeah, I am very bubbly. I friendly patient with others, not always patient with myself though. I just love that cuz it's got a little bit of everything here. We've got sports, we've got art, we've got medicine, we've got everything you can want within 20 minutes. So I love it here Jill Brook: Excellent. And I know Springfield, Ohio, because that's where our President and Founder is located. So there is a home in Springfield, Ohio that is doing tons of POTS advocacy and research and fundraising. And I've always thought that it's probably some home in Ohio that, you know, maybe you drive by it, but you'd never know that like all this progress is coming outta this one home. Allie: I know and I was like, the one time I'm this close to one of these events, I have to travel like five hours away. But it made me excited. I was like, Okay, maybe next year I can go. But yeah, made me excited that Springfield's got something so near and dear to be going on. Jill Brook: Great. Okay, so let's learn more about you. How would your friends or family describe your personality? Allie: I am caring. I get very excited about things and will talk your ear off. And I know a little bit about everything, so I'm always a good person to have a trivia. Jill Brook: Oh, excellent. Can you tell us about some things that you like to do? Allie: I love to rescue animals. To my husband's chagrin right now, I have a cat sitting right next to me and I have a dog sitting on the other side of me. I have two cats that were siblings that we adopted. I told my husband we were gonna get one, and we walked out with two. And then a year later we adopted a dog. So my dog is one of my favorite things. We go on a walks, we hang out and watch our shows together. I love doing things with my husband. We love to go on like beer tastings or just all kinds of fun events around town. Also sleeping, I mean, just as part of being a POTS person, I think naps become one of, you know, your favorite things. So a little bit of everything. Jill Brook: Yeah. Okay. If we were to force you to brag about yourself, what are some things that you're good at? Allie: I am good with technology. I am like the go-to tech person at work. I'm always teaching people how to do things. I didn't ask for this job. I always had to teach my grandpa, which taught me a lot of patience in life. And then now I'm happy to teach whoever else whenever I need to. As long as I do not have to set up iTunes again for him, I'm happy to set up for anyone else. I'm a pediatric nurse. I'm super passionate about my patient families, and I'll go to the end of the earth to do whatever to get them what they need. So that's I'd say my two big things. Jill Brook: Wow, those are some important skills in life. Yeah. Okay. Can I try out a couple new questions on you? Allie: Yeah, of course. Jill Brook: If you could sum it up in one minute or less, what is the greatest accomplishment of your life so far? Allie: Oh my gosh, that is a huge question. I would say the biggest accomplishment of my whole life is just bouncing back from all of kind of the hand that's been dealt to me between things happening when I grew up to then kind of getting hit with a lot of health stuff in my early twenties. I got to the point where I was like, had no job, felt terrible all the time, didn't know what I was gonna do next, was watching Love After Lockup. My husband was like, Okay, you need something to perk you up. And I, you know, found new things to get captured out. Got a new job. I'm, you know, really excelling. And now I'm even more specialized in my career and I'm happier and healthier than I have been in a very long time. So I think just picking myself up by the bootstraps in getting back into life was probably the biggest accomplishment I've got so far. Jill Brook: That's awesome. Can you give us a snapshot of what your life looked like before POTS, if you had a life before POTS. Allie: Yeah. I don't know. We've been kind of playing with the idea of when POTS started or what, cuz I definitely have passed out at least like. 12 times in my life. It happened at church when I was like eight, when I was playing tennis, you know, those other things, but I wasn't having the Orthostatic symptoms, but also like in college was just drinking Diet Coke, like it was water and was very fit. So I probably kind of might have snuck around it, but definitely before my most dramatic event slashed, when I really started noticing symptoms, I was pretty active. Could get by with six hours of sleep. I was working night shift, so I was just like never awake at the right time, you know? But still going out every weekend, staying up till two in the morning, you know, taking my dog on really long walks and running around. You mean like not taking good care of myself, but still feeling great doing great. Fully functioning brain. I would say before my like most major event and symptoms were like, kind of rolled in or became noticeable. Jill Brook: Okay, so what did that look like? Allie: We like to call it I rose from the dead on Easter morning because I was working on the floor. I just got my first like nursing job and it was three in the morning, went downstairs, got to Mac and Cheese, sat down, and the next thing I knew I was on the floor and they doing CPR and I was my own first code blue I came to and I was like, Hi guys, like what's going on? And they all looked shocked too because they were like, You didn't have a pulse a little bit ago. And I was like, Oh, I'm that, I'm sorry. I literally kept apologizing cause I was like, Oh, I'm so sorry guys. Like, I'm so sorry. I'm like being such a burden. Just no idea what I was about to walk into. I work at a children's hospital, so they take me down to the children's ed. They're all expecting someone who's coding and I'm just rolling in a wheelchair, just being like, Hi. They're like, Okay, well we'll give you some fluids and set me to the hospital. They didn't really know what to do with me, but my orthostatics were terrible. So they're like, We know something's up, but they couldn't really figure it out. So they sent me home on a heart monitor. My primary care doctor, who was amazing was out. And so I saw a guy who someone else was like, Oh, it might be POTS. That POTS is really an old lady. So then they sent me home and I just was having chest pain all the time. I was like anxious every time I stood up. My heart rate would get like to 180. I also was wearing a monitor all the time so that I was beeping in patient rooms and freaking people out. They like, are, am I beeping? Are you beeping ? So it was definitely a wake up call to who knew what, like no one knew what was wrong. So I was just, it was a lot of anxiety and a lot of just like physical symptoms and being exhausted. Jill Brook: So how long did you go through that stage until you had an answer and somebody says, We know what this is. It's POTS. We can start treating you now. Allie: Yeah. So let's see. I passsed out in April and then that was my most dramatic of like passing out. But they were like, Oh, it could be POTS, but like the only old ladies have POTS, which is very funny now because I know only young people. Really? Or you mean like middle aged people with POTS? I haven't really met any old ladies with POTS. So then, They sent me the cardiologist, they did stress tests. I did a table tilt. I didn't pass out during my table tilt, but I was symptomatic. But the cardiologist was like, It's just anxiety. Like you're just anxious. You know? I think if you talk to someone and get some meds, like you'll be fine. And I was like, Okay, but I still don't think it's normal that I'm sitting here. My heart rate's 140 and he was like, Nope, it is anxiety. So then went back to my primary care doctor who was amazing and she'd done some of her study at the Cleveland Clinic and she was like, Why don't I just send you up there? They've got a POTS clinic. If it's not POTS, we'll know better and we should go to the next place. And if it is great, we sent you to the right place. So I called in an appointment two days later. It just happened to have an opening, which is rare. And I went up there and somebody couldn't get my table tilt results. So they're like, We're pretty sure it's POTS, but until we can see your tilt table we can't call it that. So then went through some more stuff. We tried some meds. Got a lot better. Started drinking real water and not Sprite, which I thought could be hydrating, but it's not. Like started everything you kinda have to do for the protocol started feeling a lot better. Then got another table tilt because they couldn't get my records again. They're like, Oh yeah you've got POTS. And so it was right after Christmas, like three days after Christmas I found out. So probably eight months from start to beginning. And then I ended up getting Covid in 2020 and then have kind of developed a new POTS or new dysautonomia symptoms. I was this close coming off meds, like literally I had my appointment to come off meds and I, it was right in the middle of me having COVID. So like, okay, we won't touch anything. And then it just got worse. So now we're kind of looking at it again. So I feel like I'm going through the process again. But I mean, it was great that I already had the team in place to kind of work on it and not have to go through that battle again, but right now my symptoms are a lot worse than when I started, but we're working on it. Jill Brook: Oh, that's the attitude so can you talk more about what you alluded to before about how your greatest accomplishment in life had been bouncing back from some of this stuff, including the POTS. Do you mind talking about your come back from some of the POTS stuff. Allie: Yeah, of course. I got my diagnosis and I was doing okay at work, but like I was working in a very acute floor, so you have to be on your game like all the time. And at first the adrenaline was fueling me and then it became to the point where it was overwhelming me and I couldn't be as focused. And then early, 2020. Cause right before Covid hit, I passed out again and I got a concussion this time. So then it was really bad and I was having headaches and couldn't get my brain to function. You know, I took two weeks off just to see if I could get it back, and I am very impatient with myself being at the level that I think I should be at. I think I should be a star athlete, but my body does not think that. So I just like, wasn't as quick as I couldn't get it. And then the, the pandemic hit and my boss and I kind of sat down and we were like, Hey, this is not working. My anxiety's through the roof, my symptoms are through the roof, and I can't physically tolerate this job as much as I want to. It was like my dream job. And we're like, this isn't gonna work. So they were offering furlough because of the pandemic. We were doing less surgery, so, I was gonna be furloughed anyway, so I was like, let's just volunteer for it now. And so I thank goodness found another job in that time, but I came home that day and I just like balled because that's the first time I've ever kind of had to leave a job, like, and didn't have my next one lined up. But that was terrifying and I felt terrible and we couldn't really figure out why. And well, we knew it was the concussion and you kind of just have to wait a concussion out. You can't really do more than. And my POTS was mad cuz I'm stressed and so then that's gonna make it worse. So, I was just sitting out pulling my couch just like so depressed and didn't know what to do, and I just was like, Okay, we're gonna keep buckling through and keep pushing and figure it out. And I found my job now in an outpatient clinic and I love what I do. I love, love, love what I do now. So it was a blessing, but it was even just starting that job. I was like, This is nowhere near the level where I performing before, even before POTS, I was like so quick to learn anything so fast to keep track of a bazillion things at once. And the fact that I couldn't was so frustrating. And it's just one of the, those things where it's like you get so bad at yourself, but you can't do anything about it. So, patience with myself has been such a huge thing. And I think about a year after being in my job, I, you know, completed a really huge project that changed how we do things in our department and like game changer kind of thing. And I was like, Hey, I can be good at this job. I can be really successful and still make an impact on others lives without needing, to be in that super fast-paced job. So just kind of a change of mindset was a huge part about it. Jill Brook: So can you talk more about the concussion? Since you kind of have both sides of it, right? The medical provider side and the patient side, what symptoms were you having and for how long? And you said you just kind of have to wait out a concussion. How long did you wait out and did all the symptoms go away? Can you just tell us a bit about your concussion experience? Allie: Yeah. So actually I'm pretty sure I've had a couple concussions just from times I passed out and kind of each one you have gets a little worse. Which is why obviously they're so worried about football players too with these, Right. When I first got it, I had a headache for two straight weeks. Had to go to the ED like twice to get meds, just to get it to stop. Like I couldn't look at screens, I couldn't do anything but lay in my bed, which was miserable. Cause I am someone who needs to be doing something all the time. Like I could barely even look at a book. My head hurt so bad. And then after that my processing was not where it needed to be. I was needing to write myself notes more, like my short term memory wasn't quite back like it all kind of, I'd say within three months I was probably 80% back. And then within six months, 90, and then within a year I was back to a hundred. But I was having a lot more migraines for that year afterwards, which is like frustrating cause those things knock you out. Like can't look at screens, can't you know, sit in a room with light, have to go sit somewhere dark and wait it out, which was, gets frustrating. So you literally have to stop your life and walk away and that was a huge part of it. And then just being good about taking my meds all the time was huge to try and, you know, kind of prevent those headaches. And those were some of the biggest things I had in nausea during the first few weeks was really bad. Jill Brook: So what helps you most with your POTS now? Allie: Laying down is the biggest thing cuz that's the one thing I do the least since, especially since I'm in nurse, I tend to be running around the floor, sitting. So laying down is the hugest thing. I come home and I lay down for an hour. We call it quiet time. I come home, I lay down for half an hour and I just do something mindless, like read a book or play game on my phone. That's gonna be a big thing, especially with like the fight or flight part of POTS where if you're doing a lot of things make you excited or nervous, like it definitely, I feel like amping up my POTS and my symptoms. So that hour of coming home and letting my body relax, I think has been a huge part of like then being able to have a home life because I definitely can push myself through the work life, but then if I don't give myself the hour, I am no use to anyone when I come home. So that I would say is my biggest help Jill Brook: Do you think that POTS has taught you any life lessons? Allie: It has taught me a lot. I'd say life lessons wise, I mean the amount of patience POTS has taught me is insurmountable. I have learned I have to be patient with myself and with others in the medical system cuz I don't understand why we can't get answers right away. That has been a huge thing. It's taught me. I think it's taught me to really appreciate the good days. When I wake up feeling good and I feel good all day, that's the day I know I need to take advantage of and, you know, make memories with my husband or with my family. And remember those when I'm having a bad day that, you know, it's okay if we can have a bad day cause it means we're gonna have more good days. And I think just being positive when you're like at that bottom and everything looks terrible. There's nothing I feel like I can do, but be positive because there's no point to sit in the dumps and just be upset. Like I feel like I gotta do something if being positive is the one thing I can do, and that's what we're gonna do Jill Brook: great. So a moment ago you had mentioned frustrations with the medical system. Allie: mm-hmm. Jill Brook: Can I ask, what are your frustrations with the medical system? Cause you see it from more sides than just only the patients. Allie: I think it's what we're all seeing, you know, as a nation right now, there's a shortage of providers, there's a shortage of space, there's a shortage of, right. There's barely any time for people to see patients. So I would just be like, I don't understand why I have to wait three months to see this GI doctor, like my gut feels terrible. Why do I have to wait to fix this now? Even though, I understand it's because there's only so many providers that see people like this like I get it, but it just drives me nuts. Cause you mean like I'm someone who needs it now. But I think it makes me appreciate when I do get to that doctor's office, like I went for a visit that I just had to wait six months for. And he spent an hour and a half with me and just talked to me about all this kind of stuff and I was like, This is why you wait this long. Because he literally went through every single fear or concern I had and just tore 'em all down. And I was like, Okay, this is what we can do about this. Like made me feel so good when I walked out that I was like, Okay, yeah, I'd wait six months again for that. You know what I mean? So I think when they make it worth it, then it's still worth it. So it's just one of those things where you just are like you get why you have to wait. But it's just still annoying. Jill Brook: Are there any things that you try to do as a patient because you know that when patients do it for you, it helps you help them. Allie: Yes. I my chart my doctor. When I have a concern I'll send him my chart. I just my charted the other day about some headaches I was having and I was like, okay. Cause I work in neurology and talk to kids about their headaches. I was like, Okay, what did my doctors wanna know? Okay. They wanna know have I been drinking my water? Have I been taking my meds? How's my sleep been? So I just go, I'm just like typing it as if I was, calling the patient to ask for the same things. But I also don't get too flowery with it. Cause they need to get through as quick if I want my answer quick. So just try to make it concise. But given the details so that we're not going back and forth eight times to just get to where we need to go. My other big thing is always trying to keep my medication records up to date at every single place. Like even if they're just like rolling through, it's like, No, I need you to add these five that I'm now taking because I know it's gonna make a difference. Like let's say if I have to go to the ED that's gonna make a difference there. Or when they go to determine my meds, like I've had them be like, Okay, well we're gonna go up on this. And like, Oh, well actually I've been up on that for the last, like six months. So no, we need to go up even higher or pick something else. So I think that's a huge other thing. I always am big about Jill Brook: yeah. So what do you think gives you the strength to deal with all this? Like what helps you cope? Allie: I mean, I think just the desire to want to like, not even get back to where I was, but just be able to like, enjoy my life again. I have an amazing, lovely husband who will sit and listen to me for hours. Just talking, complain about stuff, Bless his heart. He is just so positive and pushes me to be better, to do better. Reminds me to eat something every once in a while by drink that water, you know, make sure I have my stuff because, you know, we just wanna build a life together and have fun and have those good days. So I think that's what, that's what drives me to, you know, remember to take my meds and do all those things cuz there's so many more things I hopefully will get to do with my life. That it's kind of that stuff that motivates me to be like, no, let's fix this now because I don't wanna be here in 20 years and still be grumpy and mad. Then not able to, you know, get myself up. If I can have a better. Quality of life in five years. I'm happy to push through it now because it'll be worth it. Jill Brook: So as things are now, what does a really bad day look like for you? And what does a really good day look like for you? Allie: So a really good day looks like. Well first it's a day that I usually get to sleep in a little bit, . Whenever I get to sleep in, I tend to feel a little better, be a little nicer. And then it's a day where I can get up. I feel good. Nothing's hurt, nothing hurts, nothing's achy. I don't feel tired, you know, walk around to go put my clothes on and getting downstairs. I feel good enough to take the dog out in the morning and then feel good enough to go on some kinda adventure with my husband. Either go in, do a new brewery or. going to the garden place or whatever we decided to do that day. And then, you know, eating lunch and not feeling nauseous afterwards and then coming home and relaxing for a little bit. Cause I know no matter what, I have to take a break during the day and then getting back up and being able to go out for dinner with friends and go to drinks and hang out and then go to sleep and wake up the next morning and not feel like terrible. Like that's a good day is a day where I get to go out and be active and not feel like there's gonna be consequences for it after. Jill Brook: What percentage of your days do you get that? Allie: I would say I have probably 10 to 20% of really good days. I would say I have 70% moderate days where they're pretty good, but like I gotta do some stuff to like I gotta take. Because I ate a little too much or my belly doesn't feel good cause it's too hot outside, or gotta work on this where I gotta kind of tweak stuff to make it work for me. And then I'd say 10% are bad days. Days where I literally have to lay down all day. I'm taking naps all day cause I'm exhausted and I'm just straight drinking water, eating little bitty snacks cuz my stomach won't settle. All my bones hurt. Or in days where I feel like when I go to stand up that I'm just like, Woo, my head hurts My body's Does not like this. Let's get done what we gotta get done recently, lay back down. They're becoming more and more rare, which makes me happy, but they're still there, which gets frustrating. Like I had one two weeks ago and I had to leave work, which is very frustrating cuz I haven't had to do that I think like ever, and I just was one of the days where it hit me, I was like, Yep, nope. We need to lay down and laying down at my cubicle is not gonna look cute. So it's like one of those things where, you know, you gotta go home and just work it out and lay down for 12 hours until your body figures itself back out. So we're making progress, but there's still a little of everything. Jill Brook: Would you be up for doing a speed round where we just ask you to say the first thing that comes to your mind? What is your favorite way to get salt? Allie: Probably burgetta or chex mix. Jill Brook: What is the drink that you find the most hydrating? Allie: If I'm super dehydrated in a pinch, I'll do a liquid IV but right now I'm really loving lemonade. Jill Brook: What is your favorite time of the day and why? Allie: Ooh, my favorite time of the day is around four o'clock. It's when I seem to have a good amount of energy. It's when I seem to get the most done at work or the most done at home. And it seems to be when I feel the best and I feel like I can conquer the world at four o'clock and then six o'clock hits and I'm like, Oh just kidding. My body's reminding me of where its limits are and I need to chill back out, you know what I mean? Or I try and plan all these things for the next day. Cause I feel really good right now. And I'm like, Oh, just kidding, Allie. Well let's, let's, let's chill back out. Jill Brook: Where is your favorite place to spend time? Allie: My favorite place to spend time is actually where I'm at right now. I'm in my basement. We have the most comfortable couch. I literally purposely made sure that it was one where it's wide enough for you to lay down. So each side is like probably the size of a twin bed. A big TV and our dog loves to snuggle up with us down here and we'll watch our favorite shows. It's where I come to recover from everything. Physical, mental weather, you know, whatever I need to do. This is my little hideaway place. Jill Brook: Great. What is one word that describes what it's like living with a chronic illness. Allie: Rough . Not in a, a negative way, but rough. I mean, it takes you some time to figure out how to smooth it out and make it work for you, but it starts off rough and it can keep being rough. Jill Brook: Mm-hmm. , what is some good advice anyone ever gave you about anything? Allie: You do you boo boo. I had a friend say that to me when I was like in high school and now it's like my go-to. Like you do you do what makes you happy. Do what makes your soul shine. And same for everyone else. Do what makes you happy. As long as you're not hurting me, I don't care. Like if that's what makes your heart happy, do it. Cause it's your life and you do you like, you do what makes you happy. Jill Brook: Beautiful. What is something either small or inexpensive that brings you comfort or joy. Allie: My husband hates it, but I love to buy things for our pets. If it's anything under $10, I'm gonna buy it. We have the fun little scratchers. They have one right now that looks like a tv. My dog now has a Hogwarts jersey. She has a bunch of Harry Potter toys right now because I couldn't resist cuz they just make me so happy. They're so cute. And they make my pets happy. Same for if I buy my husband like a snack or a trading card that he really wants, like just those little things when you give them to other people and you watch their face or, you know, demeanor smile like it makes me happy. Jill Brook: Nice. Who is someone that you admire and why? Allie: I think lately I have such an amazing family. I come from very tough, resilient people. I just recently lost my grandfather, so he has been one I've been really reflecting how inspiring he was. He went to Ohio State and had a crazy time there and then was in the Air Force and we keep finding out amazing things he did there and then , had a family of six and he was, there for me every day. I would go to his house after school and we'd have the best debates and talks he taught me so much in life and just all he did was his life and constantly wanting to serve others that I can see where I get it a little bit. I got his bushy eyebrows and I got his, you know, love to serve others. So, and probably a little stubbornness and definitely a little of his heart issues. He also had some heart issues too, so, we like to blame it on him. My aunt also has some heart stuff, so we like to say that Papa gave it to us. He also gave us the dribbles. We're terrible at keeping water in our mouth at times where we dribble all over ourselves. So, he's the one I've been thinking about a lot about when I think about inspiration. Jill Brook: Oh, that's nice. What do you think is the toughest thing about POTS? Allie: I mean, I think it's the basic, It's literally the standing up . It's when you literally want to use your body and you can't, That is the toughest part when it seems, Oh, okay. I've done c and d, I've done all the things. They told me. I have compression garments on out the wazo, and I can't stand up without feeling uncomfortable, or I can't get through the day. That's the most, frustrating part for me right now. Jill Brook: What is a gift that you would have sent to every POTS patient on Earth if you had infinite funds? Allie: The first thing I would send if I could and have infinite funds and some really great scientists would be a hug. I just feel like everyone going through POTS just deserves a hug cuz it is terrible at times. And then, probably, a new nervous system if I could too, so that we could just, get it outta here and then just be done with the whole POTS thing if I could. And then probably, you know, a little liquid IV just to throw in there too. Jill Brook: I like that. A new nervous system and a little liquid. IV Allie: Yeah, everyone needs to hydrate. Jill Brook: Okay. Can you finish these sentences? I love it when, Allie: I love it when I come home from work and my dog is very excited to see me. Jill Brook: I hate it when. Allie: I hate it when my cat pee on the carpet. That's my current upset. Jill Brook: People might suspect I'm a POTSie when Allie: When they find me on the floor, Jill Brook: And have you ever had to sit down or lie down in a weird place because of POTS? And if so, where was it? Allie: Yes. Multiple different places. Definitely, the weirdest one was it was before I had class, but it definitely was like a very much a symptomatic day and I was just sitting in the hallway. at my college and I went to a pretty big college, so there's just like a lot of people bustling to and from classes, and I'm just like sitting like hunched down, hoping for the best. I'm just like, It'll be fine. I'm gonna bounce back. I was like, I'm definitely gonna go back to class. It took me a solid 20 minutes. Also though, my family now has a standing rule where if I don't come out of the bathroom after 10 minutes, they come to check on me because that's my new thing. If I'm at a bar and I don't feel good, I start to feel loopy I just go to the bathroom and sit on the toilet at least, cuz I know I can't lay down, but I know I can sit down and get my feet up so they come to check on me, make sure I haven't passed out. So, haven't yet did take a nap once though, cause I was really tired. Jill Brook: So I just have a couple more questions. What do you wish more people knew about POTS? Allie: I think that's the hardest part with like an invisible illness, which is like one of the most annoying words. I mean, it is very much describes what it is, but I feel like if you were paying attention, you would see some of it, right? You would see that it's someone who gets short. You know, pretty quickly, or someone who is always sitting down or always has their feets up or is always wearing compression garments when they're not that fashionable. So I wish I knew how much it was like a daily thing and not just a, sometimes when your symptomatic thing, like it's not just those days when I feel like I have to sit down or lay down, it's every day. I mean, it affects a little bit of something in my everyday. I also have like mast cell disfunction, so I break out in hives, like just getting excited or nervous about things and. that has opened up a lot of people's eyes too. I feel like my coworkers at least could be like Allie is there, Is there something on you? Like one person literally thought I had a hickey the other day and I was like, Uhuh, no, my husband and I are too old to be getting hickeys. I was like, Oh no, that is just my POTS. And they're like, Oh, like didn't even, they're like, I didn't even think about so that it would be, you know, something day to day. So I think. . Just there's a lot of people who quietly suffer or quietly are fighting through things, and I think just giving people patience and not needing to like know why sometimes I think is a huge thing. I wish people would just do. Jill Brook: Yeah. So my last question is just if there's anything you would want to say to your fellow POTS patients out there who may be listening or anything that you would've wanted to hear maybe on your darkest days from other POTS patients who had broken through the way you have to a. At least a slightly better place. Allie: First that I'm giving you a virtual hug and you are one of the strongest people out there. If you are still fighting through this every day and getting up and you know, Just getting up to go to the bathroom at least every day, that's a struggle in its own right. So, every little thing that you do to just get through life I think is huge and amazing and you should pat yourself on the back even though you might not. I was very lucky in that there was actually two people with POTS that worked on my floor when I first passed out, and they were amazing. in the way that they were, Like, they both were pretty well managed. One of 'em was almost basically in remission outside of just, you know, needing a, a cardiac med. And she was just like, It's gonna take a while. She's like, It took me at least three years to get to where I'm at right now. So she's like, You're not gonna be here in a month, so, you know, be patient. She's like, You're gonna have bad days. She's like, I still have bad days. I have to call off every once in a while. And she's like, But it's worth it. You're gonna feel so much better after you go through these wild tests. A table tilt is like something you would never think of as a concept. And it's just still wild to describe to other people when you go through that test. And the other one actually, she had mass cell and I wasn't having symptoms yet, but just the way that she was so positive about it and she had a bunch of foods that triggered her and she just was like, Yeah, it's annoying that I can't eat cake, but you know, I have so many other things I wanna do with my life and. If that's the one thing I have to give up to live a good life, then that's what I'm gonna do. So I think looking for role models or just anyone to be open and honest about what it's like to have POTS to help you through it, I think is also a huge, huge part of it. Yeah. Jill Brook: Well, beautiful. Allie, thank you so much for sharing your story and your insights with us. I know everybody appreciates it and I know everybody listening is wishing you only the best going forward. Allie: Well, thank you so much. Thank you for having me. I had a great time and I am so inspired by what you do in this podcast and I can't wait to keep listening. Jill Brook: Oh, thank you. Yeah. We have such an amazing community that it's great that everybody kind of joins in to help everybody else. So, hey listeners, that's all for today. I hope you enjoyed today's conversation. We'll be back next week. But until then, thank you for listening. Remember, you're not alone, and please join us again soon.

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