E222:Jess from Louisiana

[00:00:00] Jill Brook: Hello, fellow POTS patients and magnificent people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Jess. Jess, thank you so much for joining us today. Jess: Thank you. Thank you so much for having me. I'm excited to be here. Jill Brook: Okay, so let's start with like the baseball card stats, you know, like how old are you? Where are you? What are some basics? Jess: Okay, how old am I? I will be 31 next month, actually, because July started. I am in Monroe, Louisiana, which is northeast Louisiana. And I live with my parents who are wonderfully amazing. I always tell people I would not be able to do what I do without them. They are an amazing support system. I have a younger sibling. He actually just moved, so he just left us. He's in Dallas. And still just trying to figure everything out on this journey and hoping that my story will be able to educate somebody and [00:01:00] motivate somebody because we all need each other. Jill Brook: Oh, that's so nice. Okay, tell us about Monroe, Louisiana. Jess: What is there to know? It's called like the Delta, you know, it's like with Louisiana, you have like the Bayou and then you have like the Gulf. So this part of Louisiana is always referred to as like the Delta area. And like Monroe is like the metropolitan area, city of the Northeast Louisiana. So it's like the biggest city in Northeast Louisiana. Jill Brook: So no alligators. When I think of Louisiana, I think of... Jess: No, we do have alligators. We have a bayou here and we have alligators in the bayou. But they're not like in the street or anything. I think that's kind of more of a Florida thing. But yeah, it's not that bad.. Great food, you know, great culture, yeah, good people. Jill Brook: Excellent. Okay. So how would your friends or family describe your personality? Jess: Oh my [00:02:00] gosh. They will probably say that I am very laid back. I'm very giving. I'm very compassionate. I'm also, I care a lot and sometimes that's to a fault, but I do have a really big heart and I love to laugh. I love to enjoy myself and I love to make sure that I live a very purposeful life. So that's what they'll probably say. Jill Brook: Oh, that's great. Okay. And if we make you brag about yourself, what are you good at? Jess: I hate the brag about myself. But when I think about what I'm good at, I am good at coordinating. That's one thing that I do now. Like, I help people with anything from coordinating baby showers to galas. I've coordinated campaigns, all kind of stuff. So I like to coordinate. I really care a whole lot about policy and I care a lot about advocacy. So I am like, I guess you could say, not really [00:03:00] a politics head, but I do have a lot of interest in policy work one day, especially around health care assets. So that's something that's really important. I'm in school right now, trying to get my Master's in Social Work Health Care, so that I can one day continue to help other people who, you know, who struggle with their health, provide them with resources. And that's something I love to do is be a resource, and be able to provide resources to other people. So if I had to think about the things that I'm good at, it's definitely that. Being a good resource and helping people. I love to help people so when, when it comes down to anything that I can do to like make somebody's day a little better or their life a little better, I'll do it. Jill Brook: That's so fantastic. Okay, so I'm going to throw in a question from left field, you know, by contrast to that, which is okay, what's, what is like one of the most fun things you've ever done in your life? Jess: One of the [00:04:00] most, I would say that I'm actually like pretty adventurous in spirit. I am. Out of everybody in my family, we go to the amusement park, I'm the one that want to ride everything, and they, like, I had to beg them to get on it with me. But probably the most exciting thing that I've ever done is parasailing. Like, that was thrilling for sure. Jill Brook: So can you give us a snapshot of what your life looked like before you got POTS? You know, like, especially, like, you could give us a snapshot of as much as you want, but especially like in that year before you got POTS, what were you up to? What were you doing? What were you thinking about working on? Jess: I got POTS in 2021, so right before, once I contracted COVID, so it was something that developed as an exacerbation, you know, with my immune system being in overdrive and it started attacking my autonomic nervous system [00:05:00] like crazy and the year before that, because that was the beginning of the year, you know, it was 2020. So, it was a lot going on. Everybody was frantic. Everybody was scared. I worked in health care. I did case management. So, you know, I would do care coordination, help patients. We'd get, you know, discharge summaries or hospital visits resolved, what they needed, medicines cleared or DME equipment, wheelchairs. I did all of that for different people. Wound care, all of it. So, I was super busy. I used to, like I said, I care a lot and I stayed at the office super late all the time. I worked really hard. I worked really late to try to help patients. I was in school, like I said in a master's program and really busy in like other organizations. I like to be engaged in the community with my sorority and just, you know, other organizations that are big on like community building. So I would say that that's what I was doing. I had just started my master's [00:06:00] program the end of 2020. And try not to get COVID. Just try my best. Everybody will be going out and doing stuff, and I'll be like, but it's COVID. Like, I was so nervous. Like, I was, that's why I knew when I got COVID, it was like, how? But I was really precautious. I always wore a mask at work all day. I wore a mask, but I'm convinced that I got COVID at work. Because we had patients that would come up there they knew they had COVID and it was just common, so that's, that's probably where I got it from, but yeah, I was being essential. Busy being essential. Jill Brook: Oh, okay. And then what? Jess: Well then couldn't taste or smell one Friday evening. Jill Brook: I wish people could have seen your eyes just now. Your eyes had this look of like, Oh, the tales I could tell. Jess: And it was crazy because at that time, you know, the vaccine was not available to everyone. It was only available, it was like they were tiering it. It was like right when it came out, like I think it came out at [00:07:00] the end of December. So when I got it, it hadn't, the vaccine hadn't even been out in a month yet. So, you know, everybody's like, I don't know about this. I was nervous about it. But my, the office I work for, he was like, y'all need to go ahead and get y'all's vaccine. And I was like, oh, my daddy worked, he did chaplain work at a hospital. So he got the vaccine. I said, well, I'll see what happens with him. And if he does okay, then I'll get it. But before I could get it, I got COVID. So lost my taste and smell. And I said, Oh my God, I have COVID. I knew it. And I went the next day to get tested and I had it and I quarantined at that time. It was two weeks, and it wasn't horrible. You know, I've always been, a sickly person because I've always dealt with different symptoms of dysautonomia with bladder issues, diabetes, lot of issues through my stomach. I've had stimulators, gastroparesis. If you can think of it, I've dealt with it. Eye issues, all of it. So it wasn't like I wasn't used to being sickly. [00:08:00] So I said, Oh, I'm just going to be take this break and go back to work. And I just never could get back to work. It, it was, like, I never could get the breath that I needed, the endurance. Like, I had a hard time getting dressed. It took everything out of me to walk from my room, like, to the kitchen. And it was just getting worse and worse. Driving was hard for me, even just, like, to go back up there and get, like, the negative test. Because at that time you had to, like, test negative and then, like, take it to work to be able to go back to work. So, even to be able to do that, it was like I could barely, I just started to realize how much energy everything took. And it then got to the point where I wasn't, I didn't have the breath. I couldn't speak like the way I'm speaking now. I could not speak full sentences. I would talk and I would be like, Hoo! You know, like I would have to take a break. And then it got to the point where I just lost my voice. So I had to go through a lot of speech therapy to be able to [00:09:00] just like learn how to talk again, because it was almost like my lungs had just given up. So yeah. Jill Brook: That sounds horrible. Can I ask, was this all within the time that you had the acute COVID or was this... Jess: No, it wasn't during the two weeks. Mm mm. It wasn't like during the two weeks. I had little stuff like I couldn't sleep. Like I couldn't really sleep. It was just strange to me because I like to sleep and I don't usually have issues sleeping. But I definitely had a lot of insomnia. I remember Bridgerton was out, like it was out, out then. It was when it first came out and I watched it during COVID because I was just up. So I had that. I had some breathing difficulties, but it wasn't horrible. And so it, and I had like maybe like diarrhea a day or two or a headache, but it wasn't horrible. Like during the two week acute phase, it was not horrible. It was like, I was fatigued. I think it more than anything, and that was the first [00:10:00] signal. And then that just started getting worse and then everything else started kicking off. It was the fatigue and then it was my speech, my breathing. Like I said, I got to the point where my lungs, it was so hard for me to catch a breath. It was like I was suffocating. Like I would have to let the window down, like I cannot get air. So I'm frantic. Because I'm seeing, you know, like I said, I keep it with the news, right? So I'm watching CNN and I'm like, if I go to the hospital, those people are going to put me on the ventilator. And what if I don't see my parents? You know, like, what if I don't make it back out? Like I was having panic attacks because I was in a place where my lungs were really, I was having a lot of difficulty breathing. And like I said, I had had issues before with a little bit of asthma, so I already had a rescue inhaler, you know and I remember the first time it happened to me I was on the phone with my mom and I didn't want her worried so I'm trying to act like everything's okay but deep down is I could not breathe. And she was talking to me and I couldn't talk [00:11:00] back to her because I couldn't even catch a breath to be able to breathe. I'm like trying to find my inhaler trying to let the window down. She was like stay where you're at. We're taking him to the ER and I'm like, why would we do that? People don't come out you know what I'm saying? Like people go in hospital and they don't come out and I get there and they're like, Oh, your parents can't go back. And I'm frantic. And I'm thinking they're going to put a ventilator on me, which they didn't. And my oxygen was always really good, but I just could not get... Jill Brook: Oh, that's interesting. Jess: It still is now. It's just, I could not get my breaths in. And so who would know, later on, once I got diagnosed. The effect that dysautonomia has on the lungs and on the blood vessels and on the airways because my lungs had partially collapsed. So like I said, I had to go through a lot of like pulmonary therapy, pulmonary rehab, a lot of convincing doctors at that time, you know, because it was new, right? So they're just going, Oh, it's long [00:12:00] COVID, you know, just give it time. And I'm thinking, y'all, it should not be this hard for me. You know, like it's been two, three months now. It should not be this hard for me. And then I started having flares. So it was like, I would be okay, and then one day I got to the point, at first was just like I said, the fatigue and the breathing and the voice. And then it started to be I would start getting, just all of a sudden new symptoms, like I was just hot and it was like nobody else is hot. You know, it's like I'm not sweating, but I'm hot. It's like I can't I was just noticing that and then my head would hurt and it was like I can't get rid of the headache. That was happening. Then it got to the point where my left side would get weak, like my leg would get weak, my arm, it was like I couldn't lift my arm up really. You know, I remember I was sitting down and I was, I couldn't sleep flat. I couldn't lay [00:13:00] in the bed because my lungs were so bad. So I was going from ER to urgent care, trying to get all kinds of stuff for my lungs. All of these specialists are filled, you know, because every, everybody's, like really kind of only doing mostly like you couldn't do anything elective at that time. Remember? So it's like, okay, if this is not already planned or serious, you just wanted to be on the back burner. And so I felt like I was just struggling and fighting to get the health care system to believe that I'm having a really hard time. Jill Brook: Oh man, that sounds horrible and... Jess: It was, I wasn't able to go back to work. I went back to work one day and my boss was like, go home. I did not have, like I said, my voice, my voice was horrible. And at that time it was, I mean, it's low now, but it used to be really low. Like, it was like I couldn't talk above a whisper. And so I did a lot of talking at work. People couldn't hear me on the phone. I would get, I would get out the phone and I'm like, Oh, [00:14:00] like I would have to rest. It was like, like everything took so much energy and I just, as time went on, I got more, and more, and more symptoms. Then I started getting to the point where my bladder, I had already had bladder issues. That was getting worse. And then on top of that, I had already, I used to, I've always had issues where my eyes would water. My, I couldn't take the light. Like, if the light was on in the room, like, now light is on in this room, if I was sitting in this room right after I had COVID, I would like jerk all over the place. Creep just, it's like the light would get on and I would just get super hot and my body would just start like, just jerking all over the place. Which I've had jerks before, since I was younger, so it was not uncommon for me to be jerking, but it was uncommon for me to have a jerk being triggered by like, the light. And getting that hot that fast. And so I had to always carry fans with me. That's what I was like [00:15:00] I do it now around my neck that helped me to breathe a little bit better, like the air seemed like it got into me better with the fan and and so then I wasn't so hot I mean I had to wear ice packs on my back I still do because it was like if I got in any environment that I could not control, I could not be certain that my body wasn't that crazy. I, it was like my body would be doing things that I didn't recognize. So if I was at home, I'm in the cool, lights are off. Because at that time, like I said, I'm light sensitive. I'm heat sensitive. And it's Louisiana, it's hot. You know what I'm saying? And so I didn't do a whole lot because it was like, how can I go there? You know, going to church and just simple things. It was just like, I would go to church and just the lights from the church, I would have to leave because it was like I was just getting so hot. So it was, it was just getting worse. I got to where I developed dysphagia and I could not swallow food, I could not swallow, I [00:16:00] had a lot of nerve sensitivity. So I would try to drink water and I would just like cough like it was nothing. Like I had to drink, I couldn't drink anything thin, so I had to go to like thick liquids. Then there was like, a ton of foods I couldn't eat anymore, like stringy, like stringy beans, corn, popcorn, I couldn't do any of that. I was on smoothies for like two months straight. Then I started dehydrating all the time. It was, it was back to back, non stop, like, symptoms would come. And then I would notice every time I ate a meal, I couldn't eat big meals. Every time I ate a meal, my body would like heat up, you know, which we know is something that's common also with dysautonomia patients. So it was all of these, it was like, you look at a dysautonomia symptom list and it was just coming. It was just like coming months and months and months, yeah. Jill Brook: Now, the thing that is making this slightly less painful to hear about is that you're using the past tense. As if to say [00:17:00] that it's not that bad now. Where are you now, and how did you get here? Jess: How did I get here? I finally got my doctor to send me to a rheumatologist. Because my SED rate was extremely high, which is you know, a measure, it's an inflammation biomarker, which, like I said before, I already had a high SED rate, okay? So I had already known about that, but I never dealt with like the symptoms as severely as I was dealing with with POTS. So they just really didn't know what was going on. You know, they tested me for lupus, everything else. I was negative. They was like, okay, we're just gonna give you, you know, anti inflammatories or whatever, but my SED rate was getting even higher. My CURP was getting even higher. When I got to a rheumatologist, she said I'm gonna give you an anti inflammatory. I think she gave me Celebrix. That was the first thing [00:18:00] that got me to the place where I was able to somewhat just manage because before then my walking was bad. Like I said, my leg was dragging. I would get really tired I couldn't even sit up. My muscles were so weak and it was like sitting up like this I could not do. I'd always be like sitting up, sitting on something. So it took a lot of everything just weakened and it took a lot of time, a lot of therapy, and a lot of doctors that believed in me, and I went through a lot of doctors that didn't. And I remember the first doctor that was like, I want to help you. Because you are young and you should not be going through this. And she felt really, really bad for me. And then she was like, well, I can't do anything else because she was a nurse practitioner and the doctor that worked over her was like, well, I mean, we ran, I mean, they did myositis, all kinds of stuff. That was like, we can't prove anything. We're going to discharge her. So I'm like, okay. And I didn't really get any more help [00:19:00] until I got. And I'm my own sort of researcher and when I was in undergrad, I majored in biology. I'm an inquisitive person. I'm a science girl. I got on YouTube, all over the internet and I had to literally just self diagnose because it got to the point to where it's like, y'all don't know, but I'm not giving up on my life because this is my life. To you, I could be one patient. I could be one out of a hundred. But to me, it's just the one life that I got to live and I'm not, you know, you're at the point where it's like I have to prove to you that I'm not crazy, right? Because they're going, well, maybe it's in your head, you need to go get a functional neurology test. I went through the whole testing with the numbers and repeating the letters back and just all of that. At the time, I was also very depressed. And that was new because I had never been like that before. You know, I wasn't that kind of person. I was dealing with anxiety [00:20:00] before then, but I had never been in a dark place like that before. And so imagine everything in my life was just, it almost feels like, and I'm in Louisiana, it's always like you're, you're in a hurricane season and they tell you to evacuate and you go evacuate and you're sitting there watching on TV like the hurricane's tearing your house up. That's literally what it felt like. Because I'm thinking, okay, I'm in school, you know, I got my school going, I got my job going, things are going kind of okay for now, and then everything's falling apart. I can't go back to work. Okay, what am I gonna do for income? You know what I'm saying? Like, I can't go back to work. I had to drop out of school. I wasn't able to do the work. I wasn't able to do it on time. That was probably the hardest thing to let go, to be honest, because it felt like I'm losing this battle. Okay, because I've always been a push through kind of girl, you know, just keep going, you know, whatever the world throws at you, you know, we'll make [00:21:00] it, you know, you just keep, keep your head down and you keep working and that was not, I tell people, this illness, you push, it push back, like it's not, and you know, people don't know, right? They just go, oh, you'll be okay. I'm like, you have no idea what I have to deal with on a regular basis. Like, you don't understand the ramifications of this and how it affected my social life. I couldn't go places. I couldn't drive anymore. So, if I went anywhere, I had to depend on somebody driving me or somebody picking me up. I mean, it was just like watching everything fall apart. And I felt like I was literally in the fight for my life. That's what I felt like, because I'm going to doctors that are just like, oh, it's nothing. You know, I just give it some time and I'm like, this, this, this, this is not normal. So, I thought that I had MS. Because when I was looking at all the symptoms, it was kind of lining up. And I would go a lot of Facebook groups with other people who had [00:22:00] been COVID injured. And so they were having different symptoms. A lot of them still had breathing issues, all kinds of stuff, and did all the tests for MS and that came out negative. And so then I ran across dysautonomia one day. And I was like, this? I was watching a YouTube video and I can't remember the guy's name because that's what I used to do because I wasn't in school. I wasn't working. I mean, I would just spend my days just trying to figure out what was wrong with me. Because when I opened in the doctor, I went like phone full of notes. You know, like, okay, today we're going to discuss what's going on. If you're not trying to help me figure out what's going on we wasting our time. Jill Brook: So you figured it out, yourself? Jess: Actually, I did but I had get a doctor to believe and I did not want to do it because I used to be the kind of person that was just I don't could talk to him now. I steal credit [00:23:00] so much of where I am today to him because he was willing to try things and I should know a pattern. So I was with this one doctor and I was like, I don't want to just leave this doctor, but she's really not helping me, and it's like I feel like i'm gonna have to leave If I get the help that I to get the help that I need. So someone told me that you need to go to an internist because you know, everything has to run through your PCP. It's like I could talk to him now. I still credit so much of where I am today to him because he was willing to try things. And I know in the medical field you have to prove stuff, right? And I understand that because it's like do no harm. But at the same time if you to me it was as simple as Okay, well, I know this medicine helps with nerve pain. We just gonna try to give you that. Because I was getting to the point to where I was dealing with nerve pain. You know, I, I was dealing with, like I said, brain [00:24:00] fog, just all, all kind of stuff. And it was like, he was just willing to just shoot. He would go, you know what? We're going to try this. If that don't work, we're going to try that. And I went in there one day and he said, I think you may have something called dysautonomia. And I said, cause he was like, well, you know, I think it's a little bit of MECFS, which I had never heard of what is like Chronic Fatigue Syndrome. And when he first told me that, he was like, that's what I think you have. I was like, maybe, but that's not it. Like, it's way more than that. Like, okay, yeah, I'm tired, but it's way more than just being tired. You know what I'm saying? And when he said dysautonomia, I was like, yeah, that makes sense. And so we left from there, we did two table tests because I started having, like, where I was like a presyncope. Like, I would, I couldn't hardly take a shower because I would, like, go to stand and then, like, I'm about to hit the floor. I'm getting so weak. I'm, like, calling my mama [00:25:00] or somebody, like, somebody gotta bring me, I used to do like Gatorades, like a cool towel, like go lay down, like I can't, like it was that bad. It was like I can't even stand up and like get dressed because I'm about to hit the floor. Like it was, it was really getting bad. So he put me on Florinef. That was one thing that really started to help me. And then I kind of started just listening to a whole bunch of people talk about like salt tablets and liquid IV and I started doing it myself. And then we started getting on pills to help my heart rate. We did the halter monitor. Two table tests, I failed. So we had to do like a poor man's table test. And I, and then he was like, Oh wow. You know, like this, this is, yeah, you got POTS. And once I started looking up POTS and everything that came with it, I felt like, I can do something now because, while I know what's going on, you know, before it was just like, I do not know what's going on with my body, I do not have a name. So it's like, if I don't have [00:26:00] a name, then I don't know how to address it. But once we really came to the conclusion that this is what this is, we started taking off. I mean, LDN, I tried it with him. I mean, he was just throwing and just seeing what's up. I mean, we did a skin biopsy waited months and mon I mean, when I tell you I had every swallow test in the book cause remember I couldn't I had a hard time swallowing, couldn't swallow hardly anything. I probably took about five different kind of swallows. I didn't even know they had that many kind of swallowing tests. Nerve conductions, which I had had before but I failed them, but they were large fiber and then we did small fiber and so then I, so it was slowly, it was like waiting somebody saying, okay, well, we want a schedule for this and then you have to wait four months for the test and then you have to wait for the results. You know, everything was just like sluggish, just sluggish. Jill Brook: I just want to make sure that we address enough of your comeback tour, because it seems like you're doing so [00:27:00] much better now. And I want to know, because it sounds like you've been through absolute hell. I want to make sure we have time for you to tell people maybe what you learned, what you would recommend they do, any words of wisdom, any lessons you learned. Jess: This, let me tell you what when I got to my neurologist and I was telling her that my internist was like, you got POTS. And we knew there was an autoimmune autoimmune component to what I had. We knew that because we were seeing my SED rate and I was experiencing flares. So it was like I would get where I was sick and struggling every day. But then it would get to be days where it was like new symptoms or symptoms would just be just overwhelming. And it would last for like a week, you know, or it may last for like two weeks. And then I used to go to the ER and they would give me a prednisone. That's what they [00:28:00] did for the flare. And I went to my neurologist and she was like, you know what, I'll do the poor man's stool table testing here so I can see it for myself. And she saw it and she said, let's try IVIG. And when I tell you I was so excited to hear that because I had already, mind you, I'm already studying behind the scenes. So I had already like saw that there was something that helped people with POTS, especially POTS that had an autoimmune component like mine. And so I just couldn't get a doctor to do it. They would go, I don't have a reason to give that to you or whatever that, you know how they do. She was like, let's try it because it's been known to help. You know, so it was, it was an up and down, and then we added Midodrine so that was another good medicine to kind of help do a balance, and we started doing kind of okay, and then it got to the point where we did IVIG every three weeks. Because it was like starting to wear off. But I would [00:29:00] notice that I was having more energy. That's the main thing I noticed that it gave me more energy because the fatigue was one of my biggest downfalls. I noticed in my breathing, every day I have breathing difficulties. Sometimes I have bad pain. I have pain when it really did. But now we're at the place where they're talking about plasmaparesis because the IVIG is no longer as effective as it used to be, and I'm starting to notice that it's almost like I'm in a perpetual state of flares, like, kind of like, I'm experiencing these symptoms and they're worse. And I'm having to take prednisone. It's like when I get off prednisone, it comes back. And so it's kind of like I'm having to do, like, kind of keep my immune system kind of baited down. Because the IVIG is not doing it accurately. So I have not started plasmapheresis yet, but I'm in discussions to begin to start there and decrease the IVIG. But if I had to say what helped, a whole lot of anti [00:30:00] inflammatories. Learning my body, listening to my body. Energy pills. When I tell you this, this green tea, the days when I can't get up out the bed or I don't even want to think because I'm that tired, this really does help me and I take green tea pills. So that, along with the IVIG, that helps. And the, like the anti inflammatories and also the steroids, which I hate, but they, but they do help. If I had to say that and continue in the fight. Continuing to pay attention to what's going on with me, making sure that I'm pressing doctors, I'm prepared, when I go, okay, we're going in here together, what are we talking about, what do we want out of this? You know? And there are days when I can't talk. I don't have the strength to talk. And I may have to get her to talk an appointment for me. The last thing that really helped me though, I found through Dysautonomia International, Dr. Umesh Patel. Now he [00:31:00] is down south, he's in Covington. I think he was recognized like as Physician of the Year, like year before last or something. Found him and it was just like opening up. It was like somebody that I, that finally saw me. Like, he finally saw me because he understood the systematic nature, you know, of dysautonomia. Like, this is not just POTS and oh, just my heart rate gets up and I'm about to pass out sometimes. It's this, plus I can't hardly talk, and my lungs don't act right, and my bladder don't act right, and all of my, like, blood vessels are not right, and my heart is weak, and so it was, he understood it, and so we were able to kind of approach it in a different way. Like, he took me through all kind of testings, and I finally felt like I'm on the right path. When I got to see that dysautonomia doctor, I felt like I'm on the right path, and I just want people to understand that it's an ongoing journey, and no, we may never [00:32:00] be the way we used to be. And that's hard enough to accept. But what's even harder is if you just accept just staying the way you are. And even if you don't know somebody, if you can connect with somebody virtually, Just reach out. Don't just, you know, shut, shut yourself off to the world because it would be, it would kill my lungs to try to like sing. Like it would, they would burn, I would cough. I remember the first time I was able to sing again, I cried. The first time, I remember doing Thanksgiving, I just wanted to eat. Like, I'm a person of faith, and if I did not have God, if I did not have that word, this would not continue to have a positive mindset, I would not continue to fight and I wouldn't be here. In the same way that I had to fight for my patients when I was working in health care, not continue to have a positive mindset, I would not continue to fight and I wouldn't be here. That's literally what I became and people will go, what do you do for [00:33:00] a living? And I'll just go, I take care of myself because literally how other people have hired in sitters and people come, that's what I am for me. And and so I just, I want people to know that we did lose a whole lot. We lost a whole lot of time. We've maybe lost a lot of friends, money. We might have lost life as we knew it, but there is a way to focus on what is left. And even when you, when I go back to that metaphor of looking at the hurricane and what it's destroying, there are still remnants of what used to be. And you take that, and you be grateful for what you have left, and you build on that in order to build you a new house. And my life now is nothing like it used to be, you know, but it's a semblance. And I feel like even if you don't know somebody, if you can connect with somebody virtually, just reach out. Don't just, you [00:34:00] know, shut, shut yourself off to the world. And I just, and then that's what I want people to know more than anything. Jill Brook: Wow. Well, what a good attitude you have through all of this. Jess: Well, you have to have it though. Jill Brook: Sounds like without that, you know, you might not be here right now. Jess: Mm hmm. I will say that. Jill Brook: What I'm hearing is keep your faith. Keep seeing more doctors til you get a good one. Jess: Definitely don't, if that one doctor won't do it, somebody else will. That, that is, and I stand on that, because if I would have just stayed, you know what I'm saying, with these same doctors, and we weren't getting anywhere, then we wouldn't be here. Don't be afraid to do that. You really have to fight, because this is your life, and this is not something that we ask for. This, you know, we didn't wake up and just go, oh, you know, I want to be a POTSie. But I found a lot of strength in community. And even though I do not know anybody in person that has POTS, I know other people that have chronic [00:35:00] illnesses. And I also like to like, talk on different Facebook groups. You know, and just different online groups, and I've learned so much from them. And so getting around people that get it, even if you don't know somebody, if you can connect with somebody virtually, just reach out. Don't just, you know, shut yourself off to the world. There's still a whole lot more life left to live. And even though you can't live it the way you used to, you can still live it. You can still have a decent quality of life. Jill Brook: Beautiful! Jess: But you know what? I've heard your story and it took you way longer than me to get a diagnosis. Jill Brook: There's plenty of craptacular stories to go around. Jess: I know, we all could just sit around, I mean, the books we could write, like the stories we can tell, campfire, like, it's just, it's truly, and you laugh at it now. You know, and, and you, I mean, [00:36:00] you start off and you're crying. And then you get to the place where you are able to lay back and laugh at it. And you understand that in a world where we all go through, and we all suffer, and we're all just trying to make it day by day, it just makes you and you have to also give yourself grace too. And I know I have to do that, because I used to be so tough on myself. And I have to go, girl, You can barely stand up and take a shower. Will you stop? Like, you know, stop being so hard on yourself. Like, understand that you're going to have to take it easy and you're going to have to take this one thing, and one day at a time. And you can't think so far ahead because that's what gets you bogged down because you start to think Oh, like what if I can't have kids or people that have kids you think what if I can't be there like I mean it's like everything in your mind because everything it changes everything and so you start just like ruminating on these thoughts. So just [00:37:00] finding things that distract you. Like for me I may not be able to go like skating or like stand up at a festival, but I can still get wheeled to a concert. And I remember I went to a Beyonce concert and I was like, look at me. They had to wheel me in the wheelchair, but I was still able to go and I was still able to enjoy. And so, I'm really grateful for people around me too, that are willing to wheel me. And that it wouldn't have taken me because there are some people that don't have anybody. And I think what keeps me going is gratitude and expectation. Just being grateful for what I do have and still keeping hope for, for the future. Yeah. And I really hope and pray that one day we get a full blown cure. And we don't have to, you know, live with this day by day because it is such a ever present type of illness. You know, there are a lot of chronic illnesses that wake up in the morning and just say, I gotta fight today. And you don't always feel like doing it. But I do hope [00:38:00] that one day, things will get better for people in the future. Because I feel like if it wasn't for COVID, I think that a lot of people wouldn't be getting the help that they have gotten now. Because COVID has brought out so many more people that have developed POTS and have developed dysautonomia type symptoms. So, yeah, COVID was a bad thing. But I feel like for me and my situation, I had dysautonomia all along and I, and I never even knew it. And that's how I think it happens. It's like, oh, I get bit by a tick or something to where it's, it kicks it off and, and then that's where everybody's story is like, I was good until I hit my head and had a, a concussion. You know, it's always a thing that, like that, sets it off. But I feel like the COVID thing is what is able to help all of us. Because they're actually, you know, taking the time to do research. I actually talked to a lady that is in like a study, which I've never been in before. But I'm, I [00:39:00] just, I hope, and I'm grateful for the people like you all that are doing such, such incredible work. Jill Brook: Well, you are an awesome model of gratitude and positivity, and we are so glad that you've made this much progress, and we all hope that it keeps on going. So thanks a million for sharing your story and for sharing your insights, and I know that everybody listening is wishing you all the best going forward. Jess: Yes. yes. So now, I wish everybody listening the absolute best, because I know I used to listen to this on my worst days. So, just listen to this, laugh with me, we gonna get through it, and we're all in this together. Like you said, you're not alone. You're not alone. My thoughts are with you. Mmm. Mmm. Mmm. Jill Brook: Okay, everybody. Well, group hug. Listeners, we hope you enjoyed today's conversation. Jess, thanks a million. We'll be back again next week. But until then, everybody, thank you for listening. Remember, you're not alone. Please join us again [00:40:00] soon. And Jess is sending you a heart. Okay. Bye bye.