Lacy from Alabama suffers from gastroparesis, pain, and POTS

[00:00:00] Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions, and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive but thrive. This is the Standing Up to POTS podcast. [00:00:29] Jill (Host): Hello, fellow POTS patients and peachy 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 are going to speak with Lacy, who has kindly offered to share the story of what she's been going through. So Lacy, thank you so much for being here today. [00:00:50] Lacy (Guest): Hello. Thank you for having me. [00:00:52] Jill (Host): Let's start out with some basics. How old are you, where are you, and what are some other major things we should know about Lacy? [00:01:00] Lacy (Guest): I am currently 16 and in Alabama. I do art, I like art a lot. I have a rabbit. [00:01:06] Jill (Host): Oh my gosh. Tell us more about your rabbit. What's its name? [00:01:09] Lacy (Guest): Her name's Bartleby. She's very cute and I love her so much. She's helped me through dark times. [00:01:15] Jill (Host): Aw. Is she very snuggly? [00:01:16] Lacy (Guest): When she wants to be. She kind of goes between being a little jerk and being sweet, but I love her. [00:01:21] Jill (Host): Neat. Okay. And tell us more about your art. What kind of art do you like to do? [00:01:25] Lacy (Guest): I like to draw and just, uh, I'm in printmaking and ceramics this year, so just kind of experimenting with a lot of things, because art's one of those things I could do for a long time. So it was one of those things I don't have to stand up and I could do it when I'm sick. So it's like one of those things I could do since I was young. [00:01:41] Jill (Host): Excellent. Okay. So how would your family or friends describe your personality? [00:01:47] Lacy (Guest): Probably just bubbly and just like, you know, fun, kind, I guess. Persistent. [00:01:53] Jill (Host): Okay. And if we force you to brag about yourself, what's something that you're good at? [00:01:58] Lacy (Guest): I think I'm good at just being determined and just not giving up because, you know, there's a lot of things in life like I've been wanting to do and people are like, no, but I'm like, no, I'm gonna do it anyway. [00:02:09] Jill (Host): Oh, that's exciting. That's a great trait to have. So did you have a life before POTS, and if so, can you give us a picture of what it looked like? [00:02:19] Lacy (Guest): Yeah, so before I was, I had POTS, I was a really sick kid, you know, couldn't really go to school and stuff. It was not good. Almost on a feeding tube, but luckily that we got a medication that stimulate hunger so I could eat. So yeah, gastroparesis. That was the majority of my life. I was, you know, kind of weird kid, 'cause you know, I lost social interactions that was whole, you know? And then, when I got to high school, I was doing better. I was eating, it was kind of okay. Like the thing with POTS symptoms, I thought everyone experienced it. Like I thought everyone's vision faded to black for like 15 seconds when they just stood up, and that was just part of life. Like I thought all that was normal. I just thought, you know, one of those things, you know, I was in band at the time and I was, Hey, I wanna do color guard cause they're pretty flags and stuff. So I did that very briefly for about a year and a half. But I mean, I kind of struggled with it a bit. But again, I was just like, oh, you know, 'cause at the time my doctor was like, "oh, you're fine. You're just outta shape. Just push yourself." So, um, you know, I kept trying almost passed out a bunch of times, you know, it was really taking a toll on my health. And the directors, they weren't very understanding. It was very conditional because, you know, a lot of my life I'd had to hide my symptoms 'cause you know, I didn't even know what was going on. You know, I had... [00:03:28] Jill (Host): Can I ask you more about that? Do you even remember a time before symptoms or for as long as you even have a memory, you at least had gastroparesis or whatnot? [00:03:39] Lacy (Guest): I mean, I have happy memories kinda, I don't really remember. It's kinda just been a thing. [00:03:46] Jill (Host): So you just grew up thinking that your vision would black out and thinking that eating was painful, things like that? [00:03:53] Lacy (Guest): Yeah, I, I just felt like, you know, every other kid couldn't really get up and they were just kind of like laying on the bed for like, you know, days at a time, really can't get up, stuff like that. Like I think I didn't really get it, you know. [00:04:04] Jill (Host): Yeah. Okay. So when did you decide that this wasn't something that every kid experiences and that you had to look for some answers? [00:04:12] Lacy (Guest): Well, okay, as a kid, I couldn't really think much about, basically, you know, my life was primarily doctor's appointments, tests, them telling me I'm lying, another test, another doctor appointment, another doctor saying, I'm lying, you know, just over and over. And then you finally got diagnosed with gastroparesis. Then, you know, I started getting medicine so I could actually eat, and then I could kind of be somewhat like the other kids. But you know, I just thought, oh, I was like sick or something. And then it was honestly high school. I'm a junior now. I realized it wasn't normal for all these things to be happening to me, and the people on my team, they could do all this stuff and like all the other kids, they could do things that even on my good days, I could probably never do. And I was like... [00:04:47] Jill (Host): Can you give us some examples? [00:04:49] Lacy (Guest): Being able to run for more than like a very limited time. Being able to just run and dance and be stronger and throw the stuff and do everything and not feel like you're about to pass out and die every three minutes. [00:05:03] Jill (Host): So you had said that doctors would test you for things and say, you're fine and you're lying. Did I get that right? Is that something that you were told, and if so, how did that affect you? How'd that make you feel? [00:05:16] Lacy (Guest): I mean, it wasn't a good feeling to be six or seven, and this professional who has gone to medical school for all these years is supposed to be the one understanding and helping fix your problems. It's like, "Hey, you know, you're just trying to get out school. You just want attention. This isn't real. She's making it up." I was placed in like therapy. They thought, you know, my mom was like some weird abusive. Acid reflux, they thought I had that. Tested it like 20 times. Still didn't, but yeah. So their only conclusion, I guess, to rather admit that they don't know or they haven't gone into the right research or 'cause, you know, it wasn't, I didn't even know it existed. I had no clue. They probably didn't know it existed. They just was like, "no, this seven year old is just wants attention. She just wants to get outta school even though she's skin and bones and about to be a couple pounds from getting on a feeding tube." [00:06:05] Jill (Host): Wow. Did you have anybody in your corner helping you believe that you were not just inventing all of this or did you believe them? How did you feel psychologically when you were being told you were lying? [00:06:20] Lacy (Guest): So my mom, my mom really, she still stands up to me now. She's like one of the big ones in my corner, you know, never stopped believing me. I didn't know what was happening. You know, she knew something was wrong and she would not stop until I could have a somewhat normal life. Same with my dad. He would get mad a lot too, 'cause he's like, what, you know? My parents just big ones. Also my older sister, you know, when we were in hospitals and stuff, she would try and, you know, make me laugh and do little things. I had a couple friends. Really, not a lot of them knew what was going on, but one of my friends, Anna, since fifth grade, she's still there for me, so she's one of a big one. [00:06:57] Jill (Host): Oh good. Okay. So once you figured out that you had POTS, were you able to see a lot of improvement once you could identify the problem? Did you try some treatments and how much better are you now? [00:07:11] Lacy (Guest): Okay, so I got diagnosed. I take a beta blocker to calm my heart rate, so it doesn't spike as high. I take fludrocort, which helps my blood, not pool or something. I have compression socks to also stop my blood from pooling. I have to drink a lot of water. You know, I have to limit myself if the room starts spinning. If I start feeling lightheaded, I know it's a flare up and I should sit down. I know if I'm feeling horrible or I'm shaking really bad and make my leg twitching, or I'm in a lot of pain, like I know that I'm not insane. I'm not weird hypochondriac. I know what's wrong. I got a cane. I know a lot of people with POTS don't need it, but I'm kind of in pain the majority of the time. I mean, it's not like horrible sometimes, you know, sometimes it's fine, but it's just overall muscle weakness. I was really clumsy. I used to chalk it up to clumsiness, but now I think it's just because I was so dizzy I couldn't really, because I would just be tripping over everything. And so it helps a lot for stability and when I'm, everything's spinning, it's nice to have something firmly on the ground to support. And then if one of my legs hurt, you know, it's, it's good. [00:08:11] Jill (Host): So what do you wish that you had known sooner about POTS? [00:08:16] Lacy (Guest): I wish I knew that it was real. I wish I knew it was, you know, a real thing. I wish other people knew about it. You know, I wish teachers and doctors and adults and my peers knew about it. [00:08:28] Jill (Host): What kinds of consequences have you had from your teachers not knowing about it? [00:08:32] Lacy (Guest): Oh boy. Here's a fun one. These particular teachers, I'm not gonna say names. They did not like me. Again, you know, bring the ones I was telling you about earlier, the, you know, very, not kind, very conditional, depending on, you know, how I could hide my symptoms and everything. They would get very annoyed and upset and did not take it seriously, and I would be like, "Hey, I'm about to pass out. Everything's spinning," and they'd just basically be like, "we don't care. Do it." I'm like, "okay." Once during a practice that was at night, it got to the point where I was about to just like keel over, like I, everything was spinning, so I was kind of sitting in the grass trying to sip on water. It was dark. We were doing like one last run through. I had to sit through it cause I, I could not get up. So people yelled at me 'cause I guess, you know, they thought I was faking or whatever. But anyways, it was time to go. So everyone kind of just left and I was kind of there. I mean, a couple people checked on me, but I was just kind of, you know, sitting there in the grass, in the dark in a field. The teachers didn't really check on me, so I was a little awkward. [00:09:32] Jill (Host): Wow. So do you feel like it has changed you as a person to go through all of this? [00:09:37] Lacy (Guest): Probably, yeah. When I go to places, I'm trying to be all woo. I try and dress nice, you know, I don't want people to see the version of me that's, like, in bed, can't really get up. So I think it changes how peop... you know, like, yeah, I think it did change me. [00:09:54] Jill (Host): Yeah. Yeah, I know that after experiences with POTS, I now try to be the person who is more understanding of everybody else's issues because we kind of know what that's like. [00:10:06] Lacy (Guest): Yeah. [00:10:07] Jill (Host): ...to not have anybody, yeah, understand or feel like they care that much. Are there any other lessons that POTS has taught you? [00:10:15] Lacy (Guest): One is to like trust in myself, you know, because even when all the doctors and like, you know, like, "you're lying," I knew something was wrong because this isn't how someone should feel. So I kinda learn to trust myself. I'm learning to pace myself, you know, when to push, when to just rest, and just learning that physical strength is in everything. Yeah, I can't, you know, run or go up stairs, but you know, I can do art and I can write and... [00:10:38] Jill (Host): That's great. What do you think helps you cope? [00:10:42] Lacy (Guest): Okay. Music is one another. I guess media like either finding people like me or characters like me. There's this one show I like, it's a nerdy thing to say, but Arcane. It's a good show 'cause there's a character who uses the cane and he's, he's my favorite . It was weird watching that because I'm like, Hey, it's just like me. So that was cool. [00:11:02] Jill (Host): Has anything at all positive come from you having POTS? [00:11:07] Lacy (Guest): I guess learning to be persistent and determined because, you know, you gotta work harder for everyday things. For people getting up, you just get up, go. For me, it's like I have to mentally calculate, can I do this or you know, it's a whole process. [00:11:24] Jill (Host): Yeah. So a lot of POTS patients have gastroparesis, and I think our listeners know that that means stomach paralysis basically. And probably a lot of people have things that feel like they're a little funky with their digestion, and they sometimes wonder, could it be that? How do you describe gastroparesis? What does it feel like to you? [00:11:48] Lacy (Guest): I think there's a common misconception it involves pain. There's no pain, I think probably because the muscles are partially or fully paralyzed, so there's no pain. It's just, it's like you're already full and nauseous, but you haven't eaten. And you can't eat because you feel full. And so, it's like you can't eat, but you need to eat, 'cause I have medicine that helps stimulate hunger so I can eat, but if I don't take it for an extended amount of time or whatever and I start getting sick again, you can tell because I'll stop eating because you don't feel hungry or you feel too sick to eat. It's not a pain, it's just, it's not fun. [00:12:22] Jill (Host): Yeah. So are you up for doing a speed round where we ask you some questions and you just say the first thing that comes to your head? [00:12:31] Lacy (Guest): Okay. [00:12:31] Jill (Host): Okay, perfect. What is your favorite way to get salt? [00:12:35] Lacy (Guest): Chinese food. [00:12:36] Jill (Host): What is the drink that you find the most hydrating? [00:12:40] Lacy (Guest): Propel. [00:12:41] Jill (Host): What is your favorite time of the day and why? [00:12:45] Lacy (Guest): Either afternoon or nighttime because I can just curl up in my bed with my rabbit and just chill. [00:12:50] Jill (Host): Oh, that sounds nice. Where is your favorite place to spend time? [00:12:55] Lacy (Guest): My room. [00:12:56] Jill (Host): How many doctors have you ever seen for POTS? [00:13:00] Lacy (Guest): Um, like at least five off the top of my head. Oh, probably a lot more. But five is the immediate. [00:13:07] Jill (Host): How many other POTS patients have you ever met in the flesh, face to face? [00:13:13] Lacy (Guest): None. [00:13:14] Jill (Host): What is one word that describes what it's like living with POTS? [00:13:19] Lacy (Guest): Funky, I guess. [00:13:21] Jill (Host): What is some good advice that anyone ever gave you about anything? [00:13:26] Lacy (Guest): Um, just trust yourself and keep going, you know. [00:13:30] Jill (Host): What is something small that brings you comfort or joy besides your rabbit, because I'm guessing that is one thing? [00:13:38] Lacy (Guest): Just watching shows and listening to music I like, and, you know, just familiar comfort things. [00:13:43] Jill (Host): Who is somebody that you admire and why? [00:13:46] Lacy (Guest): My mom, because you know, she's really cool and yeah, she's really cool. She's a big inspiration. [00:13:51] Jill (Host): What is a victory that you've had over POTS? [00:13:55] Lacy (Guest): Okay, so last year I was only going to school for like two or three days, and the other days were virtual, and I'm going five days a week now, which is really big and very tiring, but rewarding. [00:14:06] Jill (Host): Excellent. Okay. What is the toughest thing about POTS? [00:14:10] Lacy (Guest): Trying to just function. Trying to exist. [00:14:14] Jill (Host): What is something that you're proud of? [00:14:17] Lacy (Guest): Honestly, myself, because it's crazy. [00:14:21] Jill (Host): What helps you fall asleep, if anything? [00:14:24] Lacy (Guest): Get in kind of heavy-ish blanket, you know, just like a little cocoon. [00:14:27] Jill (Host): What helps give you energy, if anything? [00:14:30] Lacy (Guest): I think being excited. Like, if I'm like, oh, I'm excited to do something, I'll kind of get like a little burst of energy in the mud of not having energy. [00:14:38] Jill (Host): Mm-hmm. If you were Oprah Winfrey and could send a gift to every POTS patient in the world, you've got infinite funds, what would you send? [00:14:47] Lacy (Guest): Maybe either like a big thing propel or one of the big boxes of like ramen or something, 'cause I eat that a lot, too. [00:14:53] Jill (Host): Nice. What is something that you are grateful for? [00:14:57] Lacy (Guest): My parents because they work really hard to, you know, give me and my sister a way better life than they had. And we had the money to be able to get doctors and treatment 'cause I know that it's expensive and they wouldn't have been able to afford that when they were younger. So it makes me grateful to have parents who like care and they work really hard to give their kids a better life than they had. [00:15:18] Jill (Host): Yeah, for sure. Okay, I'm gonna ask you to finish some sentences. I love it when... [00:15:26] Lacy (Guest): I wake up and my legs don't hurt. [00:15:28] Jill (Host): Ohh. I hate it when... [00:15:31] Lacy (Guest): I wake up and the first thing I see is everything spinning. That's not fun. [00:15:36] Jill (Host): People might suspect you're a POTSie when... [00:15:40] Lacy (Guest): ...you stand up and you just stand there for a couple seconds because you're having to wait for your vision to return back to normal [00:15:46] Jill (Host): And 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? [00:15:54] Lacy (Guest): Okay, I can't think of the weirdest spot, but I know one of the recent ones was me and my friends, we hung out. We went to Barnes and Noble, and then we went to Target. And at that point I was kind of like dying, so I just sat over like in the middle of Target and one of my friends, we were just kind taking a break. So I sat in the middle of Target. [00:16:11] Jill (Host): So I just have a few more questions. So, if you imagine yourself on your toughest POTS day, what would you like to have heard from your future self? [00:16:24] Lacy (Guest): It's temporary. I mean, you know, it might last for a while, but at some point it'll end. [00:16:30] Jill (Host): Mm-hmm. What do you wish that more people knew about POTS? [00:16:34] Lacy (Guest): Just that it's, it's hard, you know, and it exists and like, you know, you see someone, they don't look sick, but that doesn't mean they're not sick. It's just, they're so used to hiding it because that's how they've gone through things before. People don't listen and you're like, oh, they don't feel good. You just gotta kind of go through it, pretend you're fine. But people don't get that like, just 'cause you look fine, you're not fine. [00:16:55] Jill (Host): Yeah. Is there anything you'd like to say to your fellow POTS patients out there who might be listening? [00:17:01] Lacy (Guest): It's nice to know that other people exist and you know, I guess we're in this together. It's like a cool little club, I guess in a way. [00:17:09] Jill (Host): That's right. It's the coolest club [Laughs] that nobody shows to be in. Um, and my last question is, why did you agree to let us share your story today? [00:17:19] Lacy (Guest): Because, I mean, I felt very alone and, you know, I still kind of feel alone sometimes. It'd be nice, like especially younger me, especially younger me, to be able to hear other people like me and be like, "Hey, you're not insane. You're not lying. This is real. It's a weird medical thing. You're not dying. You're okay. Well, you're not like completely okay. But it's, it's okay." [00:17:41] Jill (Host): Yeah. Yeah. I wish that I had heard that from you about 20 years ago, and I really appreciate that you're sharing for the benefit of other people. So, Lacy, thank you so much for sharing your story and your insights, and I know that everybody out there is wishing you only the best going forward. So thank you for your time and all your input today. [00:18:05] Lacy (Guest): Thank you. You too. [00:18:07] Jill (Host): And hey, listeners, I hope you enjoyed today's conversation. We'll be back again next week. Until then, thank you for listening. Remember, you're not alone, and please join us again soon. [00:18:20] Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you. This show is a production of Standing Up to POTS, which is a 501(c)(3) non-profit organization. You can send us feedback or make a tax-deductible donation at www.StandingUptoPOTS.org. You can also engage with us on social media at the handle, @standinguptopots. If you like what you heard today, please consider subscribing to our podcast and sharing it with your friends and family. You can find us wherever you get your podcasts or at www.thepotscast.com. Thanks for listening. © 2022 Standing Up to POTS, Inc. All rights reserved. [Transcriber’s note: if you would like a copy of this transcript or the transcript for any episode of the POTScast, please send an email to [email protected]]