Diary with Shelby from KY, a mom who loves to sing and have fun

[00:00:00] Jill Brook: Hello, fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries. Today we are speaking with Shelby. Thank you so much for joining us today, Shelby. [00:00:15] Shelby: Thank you so much for having me Miss Jill. [00:00:18] Jill Brook: So how old are you and where are you? [00:00:21] Shelby: I am 31 years old and I am here in beautiful eastern Kentucky. Specifically in Ashland. [00:00:30] Jill Brook: Awesome. And what is Ashland known for? [00:00:33] Shelby: Ashland is known for being the home of Billy Ray Cyrus and the wonderful hit single Achy Breaky Heart, as well as country music sensations. The Judds as well, forgot about the Judds earlier. [00:00:44] Jill Brook: Oh, the last time I heard Achy Breaky Heart, there was like a small village of people doing a line dance to it on Catalina Island, and it was so cool. Do people do that? [00:00:56] Shelby: Yeah, it's pretty much a rite of passage. You have to know the line dance. You have to pretty much know the song by heart. That is the next thing that you're taught after you're taught to spell the word cats when you are born in eastern Kentucky. [00:01:10] Jill Brook: Right on. Okay . Alright, so who do you live with [00:01:14] Shelby: I live with my husband and my two children, and my two cats and my two dogs. [00:01:21] Jill Brook: and how old are your children? [00:01:22] Shelby: Nine and 10. I have a little boy and a little girl. My girl is my oldest. [00:01:28] Jill Brook: And what would they say is your personality? [00:01:32] Shelby: My kids. Oh goodness. , it depends on the day. I pretty much wear my heart on my sleeve, so if I'm feeling bad, you're gonna know it. But if it's a good day, you're also gonna know it. And I try, I try not to reflect that too much on my children, but they know, they've been dealing with this since they were born. They know that mom has her good days and her bad days. So I'm definitely not Mary Poppins, but I'm also not Miss Hannigan either. So I walk a fine line in between the two, I guess. [00:01:58] Jill Brook: Awesome. Okay, so what are you passionate about? [00:02:03] Shelby: I am passionate about helping others. My husband and my friends would tell you that hospitality is my spiritual gift. So I really love to help and serve in my community. I'm really passionate about helping my community grow. And then, you know, just helping anyone in any way that I can. I like to feed people. That's a southern woman thing, I guess. But that's my love language is food and acts of service, I guess. [00:02:28] Jill Brook: That's so nice. Okay, so as somebody who absolutely hates to cook, I hate everything about cooking. I hate the heat, I hate the standing. But even before those things were challenges for me, I hated cooking because I guess just low confidence, like I was worried that I would make something and people would pretend it was good. [00:02:50] Shelby: Oh honey. That's what casserole are for, sis. If you put enough potatoes and cheese in something, people will eat it. That's the secret. Just throw everything in a dish and cover it with cheese until it's bubbly. And , you can't go wrong. [00:03:02] Jill Brook: That's awesome. I have always admired confident cooks. So any other secrets of confident cooking? [00:03:09] Shelby: I guess if you're making a casserole, the more cheese the better. And if you're throwing something in a crock pot, The more cream cheese, the better. That's how you hide all your mistakes. [00:03:18] Jill Brook: Excellent. Okay, so if we were to force you to brag about yourself besides cooking, what are you good at? [00:03:26] Shelby: Oh gosh. I don't know. I don't like to brag. My husband says that self-deprecation is also my other gift. No. I guess I like to sing. I like to sing a whole. Back before my illness kind of took over my life in my past life I did pageants and I did a lot of talent competitions. And even now at my local cigar lounge, they have karaoke night and it's my favorite. It's my favorite night. I just love to sing. I used to leave worship at my church before standing up to lead worship, got to be too difficult. now I just happily sing from the congregation. But yeah, singing is something that I love. [00:03:59] Jill Brook: Any favorite type of music to sing? [00:04:02] Shelby: I don't know. That just depends on my mood. My husband says that my voice is suited for country music, but , being from Eastern Kentucky and Appalachia, I'm sure that's no surprise, [00:04:11] Jill Brook: That's awesome. Okay, so you alluded to a life before POTS. Could you give us a snapshot of what that looked like and how long ago was that? [00:04:22] Shelby: Oh gosh. Well, it's kind of hard. So right now in my journey, we're still kind of piecing the timeline together but I definitely noticed my health taking a sharp right turn down the wrong path when I was 18 years old I was a freshman in college and I got mono, and after that my life completely changed. I didn't have as hard a time as I do now. And it's just progressively got worse. I did get COVID too. My husband and I joked that we got the original designer, COVID in 2020. No variants here, buddy. We are original. So that certainly didn't help anything. It definitely progressively got worse after that. But I was showing symptoms of autonomic disorder and autoimmune disorders, ever since I got Epstein Bar when I was 18. So before all of that, I was an athlete in high school, middle school. I had a pretty active childhood. I wasn't a star athlete by any means, cuz , I'm, it's not my style, it wasn't my personality. It wasn't my interest. But , I was a cheerleader. I played volleyball. I attempted to run track. But even before POTS took over, I don't like to run. Wasn't my thing. But I love to go swimming. I love to do all the things. I love to hike. Hiking is one thing that I can still do now if I'm very careful about it because I just love it. But yeah, before, before POTS and before all of the journey that I'm on right now life was very different. [00:05:48] Jill Brook: So what was your first sign of POTS? [00:05:52] Shelby: My first sign of POTS was this past January. I got sick. I thought it was COVID cuz COVID was going around my office again. So I was like, oh no, someone's gonna catch COVID like five times. It's gonna be me. Because that's always been the running joke. If something can go wrong medically, if something can be anomaly, it's gonna be me. Cuz it always has been. And so I went to the urgent care that's like two minutes from my house and went ahead and got tested. Didn't have COVID, but I just walked in there and I was feeling bad, but I never, ever have paid attention to my heart rate monitor or anything like that on my Apple Watch. Never paid attention to it. Because, you know, I've been gas lit my whole entire life that everything's in my head. So when I feel bad, I'm like, no, I don't . [00:06:30] Jill Brook: Oh. [00:06:31] Shelby: when I went to sit down and they took my vital. The nurse was like sis your heart rate's like 150. And I was like, oh, okay. She's like, do you feel bad? I'm like, I don't know. Do I feel bad? She's like, yeah, why don't you just sit here? And so I did. And I think the lowest I got at that point, cuz you know, of course if I'm sick, I'm gonna be flared up. I know that now. But I got, I think the lowest I got while I was sitting there was like 110. and now that's just Tuesday. So the doctor came in and saw me, he's like, Hey, you're COVID negative. You're flu negative. I don't know what's going on with this, but you need to be on bedrest for a couple days. You've obviously got a virus impacting your system. And so I went home, I called my boss and I was like, Hey I'm in tachycardia right now, and they don't know why. So they put me on bedrest for a couple days to see if the virus just leaves my system. That's fine. Well the next day I just, I, I couldn't hardly move. To get up and go to the bathroom was like exhausting. And so my husband is my son's wrestling coach, and so he was gone to practice that evening. I was home by myself. My husband made me promise to stay on the couch, like couch, bathroom, couch, bathroom, that's it. And even then he's like, listen, if you can hold it, try to. So I got up to go to the restroom and I had my pulse ox and I started to get really dizzy and I looked down in my heart rate, just walking to the bathroom, like 10 steps was at 175. [00:07:53] Jill Brook: Oh. [00:07:54] Shelby: to get really scared and I knew my husband wasn't gonna be home for a couple hours because he was with my son. And so I called my friend Haley, who is an RN and her husband is a doctor who, is also one of my closest friends that I grew up with. I said, Hey, do you care to just come over and sit with me until TJ gets home? TJ's my husband, I said, I'm kind of scared. This has never happened before. I really feel bad. Can you come sit with me? And she said, yeah, sure. And she said, do you want me to bring Chris, her husband with me? And I said, no, don't bring Chris. Cuz he'll freak out cuz her husband Chris, who is a doctor he knew me pre POTS. He's known me since I was a child. Well, of course, he comes over and he comes with her and he brings his doctor bag and all that. And she said, I tried, I really tried to leave him at home and he wouldn't. and he looked at me and he said, daggonit, you're my sister, and if you're sick, I'm going to help you. And I said, okay. So he sits me up on my ottoman and he starts taking my vitals and starts checking me out. And I faint in his arms. Just real quick, you know, the lights just, they didn't go out. They flickered a little bit and he's like, you're hyperventilating. And I was like, what? Like I'm fine. I'm okay. I'm all right. Just let me lay down. I'm fine as long as I'm laying down. He said, yeah, but you can't lay down for the rest of your life. We have to go. And I said, okay, that's fine. So he takes me to not our local emergency room, because that's where my friend Haley works. She said that they were lined out that night. It was gonna be a five hour wait. So they take me to a neighboring emergency room over in Ironton, which is close, is about 20 minutes away. That was honestly one of the worst nights of my life because that was the worst case of medical gaslighting I've ever had because I walk in and I can barely walk in. They have to fit me in a wheelchair cause I'm almost passing out because I am in a full blown flare up . And, I get back there and they take my vital signs when I'm laying down, of course, they're like, you're normal. You're anxious. And I said, listen, I know what anxious feels like. I also have ADHD. And at that time, I was taking Concerta for my ADHD. So of course they see a mental health drug and they see that I have a diagnosis of ADHD. So they immediately go to mental health. That's what's wrong with her because ADHD medication can cause tachycardia in certain patients. Now, fast forward to the doctor actually coming in. After the nurses have gas lit me and told me, listen, your vitals are fine. Like you need to calm down. You're just anxious. The doctor comes in and says, well, I noticed that you're on this medication. How long have you been taking this medication? This is a common side effect. I said, listen, I've been on this medication for two months. I I know my body. And I looked at him and I was like, listen, I've had a panic attack before. I've had several of them. I know what it feels like. This ain't it. I would gladly have a panic attack right now over this. Like, I literally feel like I'm running a marathon and I am laying here, sitting still. And he basically was like, listen, we'll do some blood work, we'll do an EKG on you. You know, but you're fine. You just need to calm down. You need to calm down. And so he offers me an Ativan. And at this point I'm like, okay, do I refuse the Ativan and be completely belligerent? And then he sends me on a 72 hour Grippy stock vacation, or do [00:11:09] Jill Brook: wait, wait. What's that? What Grippy stop vacation? [00:11:13] Shelby: 72 hour psych hold.. [00:11:14] Jill Brook: Ah. [00:11:16] Shelby: and I'm like, or do I take the Ativan? Because at this point I probably do need the Ativan cuz I'm angry. And so they took my blood work and wouldn't, you know it, my electrolytes are in the toilet and I am not okay. And he comes in, he's like, oh, well yeah, you need some fluids and we'll give you this Ativan. You can just follow up with your primary care. Okay, cool. So lucky for me, I have a really good PCP. I have a great PCP and I went in the following Monday and I explained to him what all happened, and he's like, okay, so something's not right. He's like, I'm gonna send you for a 24 hour Holter. I'm gonna refer you to cardiology and we're gonna take you off of your ADHD medication for a month. 30 days just to see if anything changes. Okay, cool. Like he started me on a path in the right direction. Now sure enough, nothing changed. It's not my ADHD medication. Now I know that, but he got me in touch with my current cardiologist Dr. Van Darrin King's daughters in Ashland. If anyone in eastern Kentucky needs a doctor that is familiar with POTS, it was so nice to walk into that. It was so nice to walk into his office the day that I first saw him, the day that I got my POTS diagnosis earlier in February of this year. It was so nice to walk into his office and he didn't even have to touch me or look at me. He read over my charts and he's like, so you have POTS? I was like, you know, I was like, you know what that is? He's like, yeah, I know what that is. He said, what did you think was wrong with you? I said, honestly, he looked at me and I started crying because the words that came out of his mouth exactly were, it's not in your head. I was like, thank you. And so him and his nurse practitioner is Brian Davis, that's who I'm currently seeing treatment with. They're fantastic. And it's so wonderful to walk into a facility and have a medical staff that knows, like, I don't have to educate my medical team. And that's wonderful. And Dr. Van Darrin, during that first visit, he's like, listen. He said, I can't cure you of this but I can do what I can to help you have the most quality of life possible. So it might take us a few times. It might take a few different things. Might be a process, but my job is to make sure that you have the best quality of life that you can because you are so young. And then he said, you know, there's support groups, there's Facebook groups. He said, I encourage you to join those because what works for one person might not work for another person, or there might be something that I don't know to try that we can talk about. And he was very receptive and he's very open and I absolutely love that. [00:13:45] Jill Brook: Oh, that's so wonderful. Okay, so once you had a diagnosis did you find anything that helped a great deal? How much better are you now? [00:13:54] Shelby: Well, I was okay back then. So, like I said, I got my official POTS diagnosis in February. I was, okay. He, you know, upped my salt intake. He said to start recumbent exercises, rowing machine, recumbent bike. I ordered myself a little pedal thing that I can sit on the couch while I'm sewing and watched TV and pedal. And you know, obviously, drinking all the salt water. My husband now he says it's like playing water bottle roulette in our house because if he accidentally picks up one of my water bottles and takes a drink of it, he's not happy about it. So I was okay. I wasn't great, but I wasn't terrible until about mid-June and that's when the weather here got terrible. So I always have been heat intolerant. I always say that I have seasonal affective disorder, but it's the complete opposite. So like the summer months, I hate the summer months. They're absolutely terrible. But the winter and the fall is where I thrive because I can be inside and I can be cozy and all the blankets and all the things. So in the middle of June, I started to get really bad to the point where I couldn't hardly get outta bed in the morning. All of my joints were flared up. I was having episodes just, you know, I couldn't hardly function to the point where I didn't like being alone with my children, especially if they were playing outside. I didn't trust myself just for a safety reason for them. Now my kids are old enough and they know now, like if something happens to mom, they know where my cell phone is, they know how to call. Like they, they know, but still, I never wanna put them in that position. So I went back to the doctor and I saw my doctor's, nurse prac Brian about six weeks ago. And he was like, how are you doing? And I was like, really crappy. I said, but I know there's not a whole lot you can do, cuz that's why I was telling my husband. My husband was like, do I need to take you to the emergency room? I said, what are they gonna do? They're not gonna do anything. They're gonna send me home. He's like, well, you need to tell your doctor. I said, babe, this is one of those things that you just kind of have to suffer through. We can treat the symptoms, we can try to make it better, but there's nothing we can do. And then Brian, at my last visit, he said, Hey this is kinda unconventional, but you know, we can try it and if it works, great, if it doesn't, it's not gonna hurt anything. But he actually started me on a cycle of IV therapy. I've been going once a week just getting fluids fluids in a banana bag. Just electrolytes once a week. And I can tell it helps. It does help. I get a few good days out of it, but then it starts on the downhill again. That's where I'm at right now. They're really big on trying to find out what the cause is. So my POTS they really believe that I have secondary POTS. So we have to figure out what is underlying. So I recently found out that autoimmune diseases run in my family. And so right now I talked to Brian, and so right now we're looking at two big possibilities are lupus and MS. So we're trying to figure that out right now to see, because if they can treat the underlying cause, then hopefully my POTS will resolve itself and, or at least get better at this point. So, that's kind of where I'm at right now, currently in my POTS journey. Today's been a weird day. I think I peaked at 2 0 9 today, which is the highest I've ever seen myself get. [00:17:05] Jill Brook: 2 0 9 beats per minute. [00:17:07] Shelby: Yes, ma'am. Just a little blip. And honestly, I started to feel kind of lightheaded. I was sitting up crisscrossed on my bed, and I had just walked in from my kitchen. And I knew I wasn't feeling good, but I was like, oh, you know, and I just happened to look down at my watch and I was like, oh, crap. So I immediately, laid down very slowly and , honestly, thi this week and honestly I was telling my husband, I think I'm starting to get like the seasonal, like crud. So I told him, I said, yep. That, that tracks because if I'm getting sick, that makes sense why I can't control it as well. [00:17:39] Jill Brook: But you're saying that even just two days after getting your IV fluids, your heart rate got up to 2 0 9. [00:17:46] Shelby: Yeah. But here's the caveat to that like I'm not a doctor. I just, I can just tell my experience because I know my own body. So I got fluids on Monday, on my birthday, and the only reason that I had to get them on my birthday is because the week before was a holiday week. Long story short, because of a prior engagement that I had that I had to be outta town for, and because of the holiday, I didn't get fluids at all the week before. So I was going on almost two weeks without fluids. And, you know, my body, my heartbeat so fast that I physically cannot drink enough electrolytes, to make myself feel better. So I don't know if that has anything to do with it, if the fact that, you know, it just wasn't enough. And Monday was a whole fiasco in and of itself. [00:18:30] Jill Brook: Well, I know that we were scheduled to originally talk that day, and you said that there was maybe something that happened during that IV therapy. Are you okay talking about that? [00:18:43] Shelby: Oh yeah, it was just a fiasco. And then I had a reaction to the adhesive that was on all the bandages and my arm was just swollen and really sore because My vein kept collapsing, like it kept pushing the IV out. So the infusion itself takes two hours and I always plan for around three cause I never know how long I'm gonna have to wait and things like that. So I always plan for about three. Well, me and my best friend, we were there at the hospital for almost four and a half hours. So that was great on my birthday. I digress. So my vein kept collapsing and because I was dehydrated, it just, it wouldn't stay. And so it got to the point where she was like, listen, I can either try to push this in and secure it and try to find a way where it'll stay or I can try to stick you again on your other arm or somewhere else, but I'm looking at you right now. It doesn't look like you've got any good veins. I'm gonna have to go get the ultrasound machine. She said, I don't wanna cause you any more pain than I have to. So you can make that choice. It's up to you. Cuz the nurses up there at the infusion center, they're so sweet. And so I opted for her to just try to keep the one that she had if she could keep the one she had, you know, that's fine if you have to dig around in my arm or whatever. And so that was a very, very painful experience. and then, like I said, so so it started to go away a little bit, but there's still some redness and swelling and things like that. Yeah. Wonderful bruising. But after that, I was done. I didn't feel good at all. Normally, I feel great after an infusion. I didn't feel good at all. I was exhausted. My arm was hurting so bad. Like I said, I was reacting to the adhesive and all that, and it was just not good. [00:20:17] Jill Brook: Yeah. And you know, it's just a reminder that we have the promise of all these treatments and sometimes we fight so hard to get access to the treatments. And I think sometimes we forget that they all come with side effects. They all come with unintended consequences, and especially these ones that have to be done repeatedly. Right. I too, get a regular infusion and yeah, every single time it's like, how many times are they gonna have to stick you and are you gonna bleed and is it gonna, you know, go bad? And then there's a little concern about blood clots or whatnot, and it's just so many things every time and I don't think people realize how much that can wear on you. [00:21:01] Shelby: I've never bled so much as I did this time, and where my vein was collapsing. You could see just the blood mixed with the solution running down my arm. I was bleeding while it was infusing and it was just, it was all bad. [00:21:14] Jill Brook: So your POTS management is still a work in progress, it sounds like. [00:21:20] Shelby: Yeah, right now it's very much a process of just figuring out what works. at this point I am at, I'm at the point where I'll, I'll throw anything at the wall to see if it sticks. like I said, we're trying to figure out what the underlying issue is. And so, I'll have an MRI here pretty soon and a lumbar puncture and more blood work and all that to try to rule out other things and. I don't know. It's just, it's an ongoing journey. I, I would be remiss if I didn't say that I'm at the point where I'm just like, I don't even care. I've been at some low points, even just here in the past week where I looked at my husband, I was like, What's the point of even knowing, like, I know I'm not going to get any better, let's just try to muscle through and I'm 31 years old, I have two young kids and he looked at me and he was like, well that's why, that's why you figure out what's wrong. Because if we know, then we either have the peace of mind knowing that there's nothing we can do or we keep trying because we do have young kids. And so, I don't know. It's encouraging and discouraging all at the same time. [00:22:26] Jill Brook: it sounds like you have a good partner in your husband. [00:22:30] Shelby: I do. He has definitely caught the short end of the stick when it comes to, in sickness and in health. He has been taking care of me while I've been sick, pretty much our whole entire relationship because even before POTS and all that, like I said, autoimmune disorders run in my family, so something that's just like the sniffles for him will take me out for two weeks. My immune system is complete trash. So he has definitely taken care of me. I feel like I've been sick, like our entire relationship, but 12 years and it's been 13 years since I've had mono. So , that tracts. [00:23:02] Jill Brook: So what gives you strength to deal with all this? What helps you cope? Do you have any favorite activities, things you do, strategies. [00:23:10] Shelby: honestly, the only thing that really gets me through like the really, really hard days. Like, I'll disassociate and I'll watch my favorite TV show or I'll sew. I really love to sew and embroider and things like. But the only thing that really gets me through on the really, really, really hard days is my faith and knowing that everything, like in my faith, I believe, and I believe that the Bible says that everything that happens. God is sovereign over and everything that happens is for his glory and my good, even if I can't see it. So I know that I have this for a reason. I'm going through this season of my life for a reason, and my best friend and I were talking the other night. I was literally driving home it was 1130 at night. I was driving home and I was crying and I was so in my head and all in my feels and I was so upset. And she said, honey, you do so much for so many people and you are constantly go, go, go, and you want to do all the things, and you've been that way as long as I've known you, and that is one of your best qualities. She said, but sis, she said, you physically can't right now. She said, and I think that in this season of your life, God is making you slow down. You are in a position where you have to slow down and you need to be still. And I was like that tracks and in that moment that was so encouraging for me because, I don't understand right now, but I know one day I will. And, that's what gives me hope. That's what gets me through the hard days. [00:24:46] Jill Brook: And you know, as you're telling all these stories, one thing I'm hearing is that you're really good at making friends, right? You had people who came to your house, you had people who went to the ER with you. And I think some of us who are introverts or have not done a good job in terms of letting ourselves get isolated are at least hearing like, okay, that sounds smart. That sounds really smart to be surrounding yourself by these compassionate people. [00:25:14] Shelby: Now, I wouldn't say that I'm good at making friends . I don't know. Like my husband says that I'm an introverted extrovert, so I have a tendency to either really overcompensate. my extrovertedness or completely withdrawal especially in social situations where I have no idea what I'm doing. I will either be at one extreme or another. You'll either find me in the corner, I will be right in the middle of the room. Because social cues are way above my head and no one has time for that crap. But the way that I work around it is, and , my philosophy and it's definitely burned me more times than it's helped me is I literally just treat people how I would wanna be treated. And I know what it feels like to not have a support system. I know it doesn't sound like it, but there was a time in my life where I really did genuinely feel alone. And so I always try to be that. Whoever needs it, because I never want someone to have to go through a hard time by themselves. So you could literally be a stranger to me. And if you need something, I'm gonna be there. I tell my kids all the time and when my kids have friends, when I'm talking to their parents, if my kid loves you, I love your kid too. And guess what? I love you too. We don't have to be best friends. We don't have to hang out all the time. But if my kid loves your kid, then guess what? You're stuck with me now. So my husband says that I annoy people with my love. And I guess that's the only way I know how to put it. [00:26:38] Jill Brook: That sounds really nice and I love it when people use their own bad experiences to try to make sure that nobody else has to have the same bad experience. [00:26:49] Shelby: That's kind of where I'm at. Like my mom is going through some health issues right now and she called me the other day and she was supposed to have a test, and long story short, the test didn't get ran. And she was like, well, Shelby, that's just how it is. And I said, no, that's not how it is. You're not allowed to go to the doctor by yourself anymore because if you're not gonna advocate for yourself, I'm gonna advocate for you. And she was like, well, Shel, just calm down. I was like, no, I'm not gonna calm down. I said, because I've had to fight for 13 years. To get somewhere just to find out that my nervous system is broken. So, no, if you're not gonna advocate for yourself, it's okay. That's fine. You can sit in the corner. I'll be the loud mouth for you. So, if someone's too afraid to step up, I don't mind in the least bit to be that person. [00:27:29] Jill Brook: That is great. That is wonderful. And so valuable. All right. Are you up for doing a speed round where you just say the first thing that comes to your mind? [00:27:38] Shelby: Oh gosh. I prepared for this. I listened to a bunch of previous episodes over the past couple weeks. Okay, let's do it. This is gonna be terrible. [00:27:46] Jill Brook: what is your favorite way to get salt? [00:27:49] Shelby: Element chocolate salt. [00:27:50] Jill Brook: What is the drink you find the most hydrating? [00:27:54] Shelby: Liquid IV [00:27:55] Jill Brook: What is your favorite time of day and why? [00:27:59] Shelby: either early morning or early evening because it's cool enough to actually be outside without my skin melting. [00:28:06] Jill Brook: Where is your favorite place to spend time and why? [00:28:10] Shelby: Oh, that's hard. So either Emerald Island, North Carolina, that's the beach we go to every summer or just down here at Fat Ash Cigar Lounge in Ashland. [00:28:21] Jill Brook: Nice. What is one word that describes what it's like living with a chronic illness? [00:28:27] Shelby: Exhausting. [00:28:28] Jill Brook: What is some good advice that anyone has ever given you about anything? [00:28:34] Shelby: pray and pray more and shut up and actually listen. [00:28:38] Jill Brook: What is something small that brings you comfort or joy? [00:28:43] Shelby: My animals, my pets, [00:28:45] Jill Brook: Who is somebody that you admire? [00:28:48] Shelby: my husband. [00:28:49] Jill Brook: Do you wanna say why? [00:28:50] Shelby: because he is just awesome. He is so selfless and caring and compassionate and giving, and he would never say it about himself because he has that tough persona, and he definitely can be that guy. But he's my rock. He's never wavered, never second guessed me, never told me I couldn't do something. Even if it was absolutely crazy. He's my constant. [00:29:17] Jill Brook: Oh, okay. Now you have several thousand POTSies who all love him. What is something you're proud of? [00:29:23] Shelby: my kids. [00:29:25] Jill Brook: What is the toughest thing about POTS? [00:29:29] Shelby: Waking up in the morning. You never know. It's literally like a box of chocolates. You never know what you're gonna get. [00:29:35] Jill Brook: What's an activity that you can enjoy even when you're feeling really potsy? [00:29:40] Shelby: sewing. [00:29:41] Jill Brook: What is a gift that you would have sent to every POTS patient on earth if you had infinite funds? [00:29:47] Shelby: Ooh. Oh my gosh. I just said this the other day. Compression socks. Sorry. I got my first pair the other day and I was a game changer. [00:29:55] Jill Brook: Right. What is something that you consider a POTS victory when it happens? [00:30:01] Shelby: When I stand up and don't feel dizzy. [00:30:04] Jill Brook: what is something that you're grateful for? [00:30:07] Shelby: My life, [00:30:08] Jill Brook: Can you finish these sentences? I love it when [00:30:12] Shelby: I love it when a plan comes together. That's the first thing that came to my mind. I love it when a plan comes together. [00:30:19] Jill Brook: That's great. I hate it when. [00:30:22] Shelby: Oh, I hate it when someone's left ice on the floor when they've gotten it outta the fridge and then I step on it with socks on. That's the worst [00:30:29] Jill Brook: That's super unusual. [00:30:31] Shelby: It's very inconvenient and super annoying. [00:30:34] Jill Brook: Have you ever had to sit down or lie down in a weird place because of POTS, and if so, where was the weirdest place? [00:30:42] Shelby: Oh, gosh. weirdest place, I don't know. I've had to sit on the floor at the Cigar lounge before, and my husband calls it falling with style. It's like a flashback from Toy Story because I don't really faint. My legs will start to go like super shaky and I'll just slide down the wall to keep myself safe. And so, yeah, I've had to sit on the floor in the cigar lounge for a minute, gain my composure. So that's probably the weirdest place that's ever happened. [00:31:09] Jill Brook: Okay. I just have a couple more questions. What do you wish more people knew about POTS? [00:31:15] Shelby: That it's not a heart condition. There's physically nothing wrong with my heart. It's the nervous system that controls it. That's what's broken, not my heart. [00:31:24] Jill Brook: Amen. And why did you agree to let us share your story today? [00:31:30] Shelby: because more people need to know about it. like no one knows about it, but that doesn't mean that it's rare. And that's what I thought. And if by me sharing my story helps someone else find the courage to find a doctor or be an advocate for themself, or, heck, just have a laugh at my expense. everybody needs a good laugh, especially on those days where you absolutely feel like trash. So I'll be someone's cheap laugh any day because there's nothing worse than feeling like hot garbage. [00:32:01] Jill Brook: That is so generous. That is awesome. Well, Shelby, thank you for sharing your story and all of your insights with us. We really appreciate it and I know that everybody listening is wishing you only the best going forward. [00:32:15] Shelby: Well, I appreciate that so much, Miss Jill. You keep doing the Lord's work and getting the podcast out. I think it's fantastic. I love what you guys do and I hope to talk to you again one day. Maybe when I find what's wrong, [00:32:31] Jill Brook: Absolutely. Absolutely. Thank you Shelby. And hey listeners, 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.