E150: Diary with POTSie Lyla and POTSmom Joli

Episode 150 July 04, 2023 00:31:27
E150: Diary with POTSie Lyla and POTSmom Joli
The POTScast
E150: Diary with POTSie Lyla and POTSmom Joli

Jul 04 2023 | 00:31:27

/

Hosted By

Cathy Pederson Jill Brook

Show Notes

This episode features a mother and daughter describing how POTS has impacted their daily life. Lyla has had medical issues for most of her life, but a bug bite seemed to really have exacerbated her symptoms. Lyla and her family work to push through the pain to live their best lives.

You can read the transcript for this episode here: https://tinyurl.com/potscast150

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

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

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

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

View Full Transcript

Episode Transcript

Diaries with Lyla and Joli [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 both Lyla Rain and Jolie. Thank you so much for joining us today, guys. [00:00:17] Lyla and Joli: Thank you. [00:00:18] Jill Brook: So let's start with some of the basics. Can you just tell us where you are, how old are you? Some easy, quick demographics. [00:00:30] Lyla and Joli: I'm 16 years old and I live in Ontario. [00:00:33] Jill Brook: So Canada, right? Do you wanna share your age? Joli? [00:00:37] Lyla and Joli: No, I'm 46. [00:00:40] Jill Brook: Okay. And tell us what are your favorite things to do? [00:00:44] Lyla and Joli: I love doing like crafts and painting and I love to like play music. I do the piano and guitar, and then I also love doing horseback riding. [00:00:55] Jill Brook: Oh, awesome. What are your favorite types of songs to play on piano or guitar? [00:01:02] Lyla and Joli: I like doing Disney songs. [00:01:04] Jill Brook: Oh, me too. I have the Disney ukulele book that I'm trying to get through, and they're the best. Okay. What about you, Jolie? What do you like to do? [00:01:14] Lyla and Joli: Hi. I like to do gardening and I like to help the kids too. They make cards for seniors, so we deliver them to seniors homes. I love golf. [00:01:23] Jill Brook: Can you tell us more about your kids and more about cards for seniors? I've never heard of that. [00:01:29] Lyla and Joli: Yeah, just my kids been making cards from home. For the last few years they've made over 3000 cards and then they deliver it to local senior homes around here. And they just make smiles on the senior's faces. [00:01:42] Jill Brook: Oh my gosh. That's so nice. Do you do that too, Lyla? [00:01:45] Lyla and Joli: Yeah. It kind of started around Christmas a few years ago. My little brother's class online, they were just doing a few cards each. But then I decided to make some, and then I think it started then for Valentine's Day after we started to make like a whole bunch. So that everybody would get one in the senior's home. [00:02:09] Jill Brook: Oh my gosh. That is so nice. I love that. Okay, so you guys are both very kindhearted. What else would you say about one another's personalities? [00:02:20] Lyla and Joli: Well, I think Lyla, she's definitely kindhearted, but she's just such a loving soul. Like no matter what is going on with her, like she just always is there for other people too. She's just very empathetic too. And, Very brave and courageous. [00:02:36] Jill Brook: Okay. Lyla, what would you say about your mom's personality? [00:02:40] Lyla and Joli: She's just really like caring and she's just like really selfless and she's just like really funny too. And She has a big heart. She always helps me when I don't feel good and she makes me laugh. She's a really like amazing person. And her middle name is Angel, so it's kind of true because she's like an angel. She's really nice. Oh my goodness. [00:03:05] Jill Brook: Oh my gosh. I'm gonna cry. That's so lovely. That is so beautiful. Oh, okay. Okay. Okay. That was great. Okay, so you guys have been through some tough stuff with Lyla's Health. When did that start? Has that been a lifelong thing or when did that start being an issue? [00:03:28] Lyla and Joli: Yeah. So Lyla's always had a lot of medical issues going on, but Since she was little she had a bug bite on her arm and she had gotten some antibiotic cream when she was three months. And I noticed since that bug bite we didn't know about Lyme disease back in the day. So we just treated it as a bug bite with some antibiotic cream. And ever since then she was a delayed walker. She always had stomach issues, start tummies all the time. It so really started when she was three months old. But it took until like three years ago. Yeah. Yeah. To actually after years of, you know, going to doctors and saying, you know, what's going on with her? She has a sore tummy. You know, getting pushed aside to, oh, it's just puberty. Right. Or growing pains or, yeah. So I just had to be firm and say, you know what? This isn't normal. I have three other kids and I know this isn't normal. So we finally got referred to a gastroenterologist and then a cardiologist. So that was in 2020, right around COVID time. So it was hard because it was really strict for everything. So pretty much it was just me and Lyla allowed to go to all these medical appointments and hospitals. So it was overwhelming because you know, you wanted more support, but you couldn't. Right. So we got sent to the gastroenterologist and she said, POTS. And I went to the cardiologist and he confirmed yes, it was POTS. Indeed it was POTS. [00:04:54] Jill Brook: Okay. And before we started recording, I think you mentioned that it's not just POTS. What else is going on? [00:05:01] Lyla and Joli: So she also has hypermobility, she's got asthma, she's got gastroparesis, IBS. She's had mild neutropenia. She also has anxiety and OCD, so like all these things and clustered together. So it's been a lot like scope. And she's going in a few weeks for another scope because the gastroparesis has gotten a lot worse. But yeah, it's just feels like it's been forever to, yeah. And it's hard seeing your daughter go through this, you know, being so young when you see everybody else's kids, you know, being normal and our normal, we don't know what each day is gonna bring because there's so many different things going on. but I had to push because I knew like her stomach thing wasn't normal. Like after she eat, she felt like she was gonna vomit all the time. And so we got sent for some gastric emptying tests... [00:05:52] Jill Brook: Wow. So three months is when that tick bite maybe started everything. Yeah, so, so Lyla, it sounds like you've really never had a life where you didn't know all these things, but what does it feel like to you as somebody who's had them from the start? [00:06:13] Lyla and Joli: Well I went like a long time just thinking it was normal and. I've met like a lot of people who are like, before I was diagnosed, who are nice, but like you'll obviously run into the people who won't believe you and stuff. Yeah, I had like when I was little, somebody who told me, cuz I would never feel good and stuff at school, and somebody said, oh, you're just making this up ,she said. She basically called me like the boy who cried wolf. In front of like the whole entire class and it was really embarrassing and it's just something you don't forget when you're a little kid and someone says that to you in kindergarten. It's not really nice. [00:06:53] Jill Brook: Wow. Yeah, and I think what I've heard from a lot of people, and I'd be curious if you think this is true, which is that like the physical pain and the physical dysfunction, that all sucks. It super sucks. But the thing that's even tougher is the psychological part and the people treating you poorly and not believing you and all that. Is that your experience? [00:07:16] Lyla and Joli: Yeah. Another thing I noticed like a lot of people like, well if you look fine, you must be fine. Or people don't understand that kids and teens can have stuff wrong with them as well. Cuz people would always say to me oh, well you look fine or, or you look really healthy, but you can't really like see inside of somebody. [00:07:38] Jill Brook: Yeah. So with all of this going on, what would you say are your worst symptoms that bother you the most? [00:07:45] Lyla and Joli: Like the stomach and then also being and not being able to do too much, and then losing my vision a lot. And then, yeah, just like the stomach's really bad. [00:07:56] Jill Brook: Is that from the combination of like IBS and gastroparesis stuff, you think, or you're still figuring that out? [00:08:04] Lyla and Joli: Yeah, I think it's from that cuz the problem is like I'm supposed to drink a lot for like the POTS, but then it'll hurt my stomach cuz the gastroparesis and I can't eat and drink too much. So it's kind of hard. [00:08:18] Jill Brook: Yeah. All the competing needs, right? One syndrome wants you to do a, and the other syndrome wants you to do the opposite of A and, yeah. So have you found anything that really helps you feel better? [00:08:32] Lyla and Joli: Rest helps. Swimming, I find that's good for my body and I don't get too tired from that. Also like Gatorade and horseback riding's really good too because it's, it's physical too, cuz you're using your legs. So it's like a little bit of a workout. And then also it's good for like the mental part of it. [00:08:52] Jill Brook: Wow, so all the sitting upright and bouncing on the horse is fine. That works for you. [00:08:59] Lyla and Joli: Yeah, it's sometimes like I get a little bit out of breath and dizzy, but it's just really fun. [00:09:04] Jill Brook: Wow. So what kind of horseback riding do you do? [00:09:07] Lyla and Joli: Well I just started so I'm still kind of learning. I started in the fall, but it's really fun. [00:09:12] Jill Brook: Oh, that's so exciting. Wow. So can I ask how it works with your siblings or with your other kids? Is it difficult because you might have some kids who wanna do some activities that aren't super compatible with POTS and EDS, does it become a family challenge? [00:09:36] Lyla and Joli: Well, we always include Lyla in everything we do. What we do is we'll go to the golf course, but I'll rent a golf cart so she can come along and if she wants to hit on a hole, she can hit, like there's no pressure for her to play the 18 holes, but it's good for her because it includes her. And like we do hiking trails and we have a backpack that turns into a stool. So she can just rest along the way. So like, we always include her because that's one thing, like I never want like her to ever feel left out. So we do everything as family. Yeah. Like we were just camping the other weekend and we were going on a trail. My sister was with me and I was really tired and exhausted. And then she, she's really funny and nice. So she came up to me and she took out her phone and she started playing some Beyonce cause she was trying to like keep me moving and she was trying to keep me motivated and it kind of helped me to keep going. Yeah. And it was really funny. It was nice cuz it took her mind off of feeling like, Hey, my body feels like it's gonna give out on me, but like, yeah, we had to get her down this hill. So we were like, okay, so we are all taking turns. Yeah, [00:10:49] Jill Brook: That's beautiful. That's awesome. [00:10:51] Lyla and Joli: that's what I love about her because even if she feels like her body is failing her, she doesn't give up. The doctor said to her, like her asthma doctor, he said, can you run a football field or a soccer field? And then she said to him, you know what? I like to think I could do anything that I wanna do. It's whether or not my asthma's gonna affect me or my POTS and my legs. But yeah she likes to try everything. [00:11:15] Jill Brook: Oh, that's fantastic. And I know that I always like it when the people around me don't let if, if I'm having a difficult time with something or I'm starting to get into a bad mood, or if I'm in pain, I like it when they just keep their energy high and they just keep joking. And I kind of say, you know, just keep, keep doing your thing. Don't let me pull you down because you'll pull me up eventually if you just keep joking and being silly. And it sounds like your siblings do that for you. [00:11:45] Lyla and Joli: Yeah. Yeah. Even the little brother, he's 13 and he's so cute. One time he saw her lose her vision and walk into the wall. I mean, we, no, but it wasn't laughable at the time. But he's so concerned about her like all the time watching when she's getting up changing positions cuz that's things people don't think about. Right? Like how lucky you are to have your vision because before her medication, she was losing her vision like 20 to 30 times a day. Yeah. So now her brain has trained her area around her, so she's always aware of where she's at because she's had falls on the stairs too. But her brother is really, really good and he knows if she's tired, he'll run, get her Gatorade, get her a salty snack. So he's younger, but he cares a lot for her too. [00:12:29] Jill Brook: Oh, that's wonderful. So what about at school? Are people this kind at school? You had mentioned that for a long time you had gotten, you know, accused of being the boy who cried wolf or faking it. Now that you have actual diagnoses, i.e. Like proof that this isn't the boy who cried wolf. Has it gotten easier with people at school? [00:12:54] Lyla and Joli: Well, I do homeschool now. It's called I L C and I find it works way better for my situation. That way, I can, like, take it at my own pace. But a lot of my friends have been like really supportive. [00:13:08] Jill Brook: What's the best support that a friend could give you these days? [00:13:13] Lyla and Joli: Well just like hanging out with me still and treating me like I'm normal because I don't like when people act as if I can't do something, cuz I'll still try to do the same things that everybody else does. But it's really nice when people come over and I'll have friends hang out in my backyard with me and we'll like do crafts. I go swimming. [00:13:33] Jill Brook: Oh, that sounds great. So it sounds like you've really figured out how to make a lifestyle work between the school and the socializing, the crafts, the swimming pool. It sounds like you have a pretty good thing going. [00:13:46] Lyla and Joli: Yeah. [00:13:47] Jill Brook: Did it take a lot of trial and error in figuring out to get there? [00:13:51] Lyla and Joli: so, oh, yeah. Yeah. Yeah. [00:13:53] Jill Brook: Do you wanna share any of that? [00:13:56] Lyla and Joli: What do you think? Yeah, just like when she first got her diagnosis. It was hard because her asthma was acting up too, so we had to put a little bit on hold for a while, like and plus it was COVID too, so everything was shut down. But yeah, we just had to like slowly figure out what wasn't gonna be too hard on her and stuff. And now I think now we're at a good spot. Like we know when her good days are, when her not so good days are, when she can't push her body she needs rest. Mm-hmm. But it's much easier now. And now we just do our own thing. Like we figure people are gonna either support us or not support us. That's when you find out who your true friends and family are. Right? Yeah. Because it's not like our fault, like sometimes if she's having a rough day, we have to cancel plans. So that was a struggle for a while because you'd have plans with friends or family and then you have to cancel right away. And it's hard for people to understand because if you look at her, she looks normal, right? But that's not how it works with these illnesses. So yeah, it took a lot of years, but now we're at the point where like, you know what? People are either gonna accept us or they're not. Yeah, we can only do so much. [00:15:06] Jill Brook: Yeah, that sounds like a smart thing to learn early on. Is there anything else you wish you had known sooner about all of this? [00:15:15] Lyla and Joli: We kind of, we just wish that we knew sooner that, what it was because we'd been living, watching Lyla go through this for so many years. It took the gastroenterologist to figure out the POTS and I was so thankful because I was like, oh my gosh, that's everything she's been going through for years. But yeah, it took a lot of doctors. Yeah. She goes to like 10 or 11 doctors helping. [00:15:36] Jill Brook: How is that in the Canadian healthcare system? [00:15:39] Lyla and Joli: Oh yeah. Well, yeah, it took a long time to get into a lot of doctors. In some traveling. Yeah. So a lot of her doctors we traveled to London, like we've been to London twice in the last two weeks to go to the cardiologist and the lung specialist. [00:15:54] Jill Brook: Wait, wait, wait. Sorry, sorry. London. Where? Not London, England, London. [00:15:59] Lyla and Joli: No. So that's like two hours. So that's where her cardiologist is and her lung specialist. And then her rheumatologist is in Hamilton, like three hours away. So, yeah. And the rest are in here. The chiropractor and the hematologist. So many doctors. Oh my gosh. [00:16:18] Jill Brook: And do they all understand POTS? [00:16:20] Lyla and Joli: Some did, some didn't. Some don't. But yeah, even some do even sometimes when you go, cuz you have to get a lot of labs, we have to explain to the technician. I find now that COVID has brought POTS awareness in Canada. Finally, it took COVID because we were explaining to nurses at the beginning and there was like, this is crazy. Canada really needs to like learn more about this because there's so many people that are suffering. Right. But now I'm finding, wouldn't you find that more people are Yeah. Finally understanding. [00:16:50] Jill Brook: Yeah. So has there been anything positive that has come from this, any silver lining at all? [00:16:59] Lyla and Joli: I think just like knowing that it's not made up. Once I got my diagnosis, it felt like more of a relief to know that I wasn't just making things up or it wasn't all just fake. Yeah. Because you know, when you're pushed away so much, you start to think like, what's wrong with our daughter? Like, nobody can figure this out. You know? You keep getting pushed away. So I'm just happy that we're finally getting answers and we're still getting answers, but I'm just happy that too, that she's so strong for being so young to go through this. She's really strong and it doesn't give up even though some days it's harder because your anxiety is really bad, right? Yeah. [00:17:38] Jill Brook: So can I ask each of you a hard question, which is, as a patient and as a parent, what was your toughest time with all of this? And now that you've made so much progress, what would you say to that version of yourself in that moment struggling. And the reason I ask is because there's probably somebody out there listening right now who is in that tough spot. [00:18:07] Lyla and Joli: Yeah, so the beginning is really, really challenging and isolating because you have to cancel, well, I mean, in our case, we had to cancel a lot of things because we didn't know what was going on with her, and there was a lot of unknown answers and unfortunately at the same time we found out it was COVID, so like real isolation. And I didn't wanna get her sick. Right. More sick than she already was. So I was being really cautious. And I found though that reaching out to support groups and I think that's good for parents to find other parents going through it. Cause I have met so many amazing people from all over the world that all the same diagnosis that she has, like all the list goes on, they all have the same and it's been really helpful to not feel alone because when you try locally to find people to relate to, it's hard because I haven't really found anybody that has all the same things that she has. So always looking like resources online have been a huge help to us and really made a difference because from feeling isolated years ago to now having support. And they did find an online therapist too who deals with chronic illnesses such as gastroparesis and ibs. So she's been a huge support helping me, like being a parent to a child with a chronic illness. So those kind of supports I would tell new parents like you, you really should look into that. The online support is a huge. Huge thing. If you can't find anybody that's in real life near you, going through the same things. What about you? Cool. What about you, honey? Oh, could you [00:19:45] Jill Brook: me to ask the question again? [00:19:46] Lyla and Joli: yeah. [00:19:47] Jill Brook: Yeah. So I'm wondering what was the toughest moment of this whole journey, and if you could talk to that version of yourself when you had been there. Is there anything that you would say to that person? [00:20:03] Lyla and Joli: It would probably be around the time where that doctor said to me basically he said, it was all made up in my head and he poked me in the arm and he said, this probably hurts, doesn't it? Because any little thing in your mind will just feel way worse than it actually is. And then so that night I was just really upset and, and I was kind of like mad and stuff cuz then I was having anxiety. Well is it actually in my head? But I think I would like tell the other people who are going through the same thing to not doubt yourself in that. Don't have anxiety and waste time worrying about what other people say because it doesn't matter cuz they're not you and they don't know what's going on inside of you. So honestly, they just don't know. [00:20:53] Jill Brook: Oh my gosh. That's so wise and so strong. I'm so impressed with you. I mean, I know that when I was kind of going through that, I at least had the benefit of being older and I had already accomplished kind of a lot of good stuff in life. And so I had what should have been a good foundation of like self-confidence and it tore me down so much and I became such a shell. I had no confidence, no self-esteem from just questioning myself like that. And I don't know how you do it at such a young age, and I'm really impressed and I'm so happy that you had the strength to get through that. Could I ask you a little bit more about some of your GI issues? Because I know so many POTS patients have the same ones as you. Can I just ask, what does food mean to you? Because to most people, food is joy and entertainment and fun. And is it that to you or no? [00:21:53] Lyla and Joli: It's more of like, if I think about food, I sometimes feel nauseous or I'll just feel sick thinking about it because anything I eat, like there is certain things that are worse for my stomach, but just in general, whenever I eat, like I get really sick and I can't eat as much as a normal person. And then, Also just like sometimes even looking at food, like I'll feel sick because all I can think about is not feeling good whenever I eat. And it sucks too because sometimes like, you know, when it's your favorite meal and you really wanna eat and you just wanna have, a lot of it, I just can't because I feel so sick. And then I feel bad too if I can't eat. Cause I don't wanna waste food too. So it's kinda hard. [00:22:39] Jill Brook: Yeah. Yeah. Well, I hope that they'll be able to do something for you so that that will get easier. Would you guys be up for kind of a challenging speed round where either of you can yell out the first word that comes to your mind? [00:22:58] Lyla and Joli: Sure share. [00:23:00] Jill Brook: Okay, perfect. And I guess some of these questions will be a little bit more directed toward Lyla, but we will welcome mom's input as well. What is your favorite way to get salt, lyla? [00:23:13] Lyla and Joli: Fries. [00:23:14] Jill Brook: What is the drink that you find the most hydrating? Okay. This one I'll ask you each individually. Jolie, what's your favorite time of the day and why? [00:23:25] Lyla and Joli: This can sound funny, but I like to get up at 6:00 AM and have my coffee and just some downtime before the busy day starts. [00:23:33] Jill Brook: What about you, Lyla? [00:23:36] Lyla and Joli: I like nighttime because it's a chance where I can like rest without feeling bad about it. [00:23:43] Jill Brook: Yeah. Okay. Next question for both of you. Where is your favorite place to spend time and why? [00:23:51] Lyla and Joli: My favorite face is being anywhere outside. It could be going for walks or in the backyard swimming. Just anything outdoors. I find when you're outside, like whatever stress is going on in life, it just goes away. I mean, it's still there, but it's easier. [00:24:06] Jill Brook: Yeah. Where is your favorite place, Lyla? [00:24:09] Lyla and Joli: Camping because I find it's just good for your mood to like, keep you happy and relaxed and then it's just a nice, like surrounding to be and it's good to like hang out with your family and have campfires and go on trails. [00:24:26] Jill Brook: That's so great. You know what's funny? I love being outside too, and I have one funny reason why I live in the forest, and one thing I like is that when you have POTS, at least my POTS, you have to pee really often. So I like being in the woods where you can just go behind a tree any old time convenient or something where you have find a place. Okay, next question. How many other POTS patients have you ever met face to face? [00:24:57] Lyla and Joli: I think just one oh, maybe two. Yeah. I talked to some people online, but two people that I have met in person. One was my friend and then like she kind of developed it like from a concussion. From a concussion. Yeah. So that happened recently, I think. And then my friend, yeah, and then my mom's friend, she's really nice. And I really like her cuz she understands like a lot of the stuff I go through cuz she has all the symptoms that I have and she always sends nice messages to my mom to tell me. And I really love her. She's nice. Oh, that's sweet. [00:25:36] Jill Brook: Oh, okay. Here's a question for each of you. What is one word that describes what it's like living with chronic illness? [00:25:45] Lyla and Joli: Bravery. Kind of like an adventure because like every day is different. [00:25:50] Jill Brook: I. I like that positive spin. What is something small or inexpensive that brings you comfort or joy? [00:26:00] Lyla and Joli: I kind of like playing with stuffed animals still cuz it's just nice to have something fun to do when you don't feel good. [00:26:08] Jill Brook: That's great. Okay. What is something that you're proud of, each of you? [00:26:13] Lyla and Joli: Well, I'm proud of Lyla, honestly, because sometimes I just wonder like how she does it with, you know, so much going on in her little body. And she still like, does her school work and so I'm just really proud of how brave she is from everything that gets thrown at her and she just, Keeps going even though it's really, really hard cuz like I said, the anxiety gets really, really bad. So yeah, how brave she is. [00:26:40] Jill Brook: What are you proud of, lyla? [00:26:43] Lyla and Joli: I'm proud to have a funny mom who's nice and caring. [00:26:48] Jill Brook: Yeah. [00:26:49] Lyla and Joli: Yeah. [00:26:50] Jill Brook: Oh, you guys are great. Lyla, what helps you fall asleep, if anything? [00:26:55] Lyla and Joli: Meditation music, and then sometimes, sometimes I put that on. But most of the time I wear noise canceling headphones. And I've been using those for two years or three years. And ever since I started to use them, I, I sleep a bit better. [00:27:10] Jill Brook: Oh, nice. Okay. And what gives you energy when you need it, if anything? [00:27:17] Lyla and Joli: Kind of going back to the start, I think music cuz my sister will just start to like play music on the speaker for me and then will just be silly for a while and then it kind of like brings up my mood and then I'll have energy again. And what about your Starbucks drink? Oh, and Starbucks. She loves refreshers from there. [00:27:36] Jill Brook: The good old fashioned way to get energy. Yeah. Okay. This is about Lyla, but if either of you has a memory, you're welcome to answer. Lyla, 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? [00:27:52] Lyla and Joli: One time she had an episode at the park. She went with her friends. Oh, I had to lie in the grass. And I don't like doing that too much cuz I don't like bugs. I get gross out by them, so I get like really scared. [00:28:06] Jill Brook: Oh yeah. Okay, so I just have a couple more questions. What do each of you wish more people understood about POTS? [00:28:16] Lyla and Joli: Well, I wish more people would understand like you can't just look at someone and make assumptions. It's like when you look at a book, right? Don't judge it by the cover and never make assumptions about what people are going through because you really don't know, cuz you don't even know how much it takes for her to get out of bed or even make her bed for that matter. So I just wish that people would just always be kind ... kind and include, inclusion. [00:28:43] Jill Brook: Yeah. What do you wish more people understood about POTS, lyla? [00:28:47] Lyla and Joli: That even though like I'm doing something and they might think I'm not doing it to my best, but I'm trying my hardest, like in school, I try my hardest. Anytime I do any physical activities, I try my hardest, but my hardest might not be the same as everyone else, but I'm still trying. [00:29:07] Jill Brook: Yeah. And, okay, last question. Is there anything you would like to say to your fellow patients out there or to your fellow parents out there who are listening? [00:29:20] Lyla and Joli: I think like from a parent, like just what I had mentioned always look for support. Don't be alone because I know we were alone for a while and it was isolating so always reach out to people because sometimes reaching out to that other mom, they become really good friends. You know, sharing your experiences and your struggles and always, like I said, just don't be alone because I wish someone would've told me that years ago because it was a really hard time for us. It was really isolating and kind of sad cuz we used to be like, really social people and then, you know, she got really sick and then I didn't feel like explaining it to the world back then because I wasn't quite sure what it all was. So just reach out to people so that you don't feel lonely. [00:30:05] Jill Brook: Yeah. And probably so many have that exact thing in common that it's actually a lot to have in common and be the start of a great friendship. Yeah. Yeah. What about you, Lyla? Is there anything you'd like to say to other POTS patients? [00:30:21] Lyla and Joli: I think just that like, once again, don't worry about other people and what they think. It only really matters what you think and it shouldn't affect you if someone says that it's all in your head cuz you know that's not true. And then also, This is kind of random, but a tip that I do like if I have blood work or if I have to do any like scopes or anything, just think about how soon you'll be in the car driving home and it'll all be over pretty soon. So that's usually what I think. Oh yeah. And then also a funny saying that we say is PTP push through pain. [00:30:57] Jill Brook: Oh, you're so strong and positive. Thank you so much for sharing your story and your insights with us today. We really appreciate it and I know that everybody listening is wishing you all the best going forward. Thanks guys. [00:31:13] Lyla and Joli: Thank you so much. Thank you. [00:31:15] Jill Brook: Hey listeners, I hope you enjoyed today's conversation. We'll be back again next week, but until then, thank you for listening. Remember, you're not alone, and please join us again soon.

Other Episodes

Episode 127

March 28, 2023 00:48:12
Episode Cover

E127: New Clues in Plasma Proteins in POTS Patients with Dr. Artur Fedorowski

Dr. Fedorowski is one of the top POTS researchers in the world. This episode discusses plasma proteins that are different in POTS patients vs....

Listen

Episode 0

May 01, 2021 00:01:13
Episode Cover

Trailer

Learn about The POTScast presented by Standing Up to POTS, and what we hope to accomplish for our listeners

Listen

Episode 110

January 17, 2023 00:55:20
Episode Cover

E110: Vagus Nerve Exercises with Dr. Kimberly Hindman (part 2)

This episode is full of free, must try tips to increase parasympathetic tone that will offset the highly active sympathetic tone found in many...

Listen