9th Annual Standing Up to POTS 5K/2K: Interviews with POTSies and their supporters

October 22, 2022 00:36:40
9th Annual Standing Up to POTS 5K/2K: Interviews with POTSies and their supporters
The POTScast
9th Annual Standing Up to POTS 5K/2K: Interviews with POTSies and their supporters

Oct 22 2022 | 00:36:40

/

Hosted By

Cathy Pederson Jill Brook

Show Notes

Members of the POTS community gathered in Springfield, Ohio on October 22, 2022 for the 9th Annual Standing Up To POTS 5K/2K, presented by Normalyte and Thrivent. The weather was gorgeous, the POTS community was out in force, and lots of connections were made. We raised more than $36,000 associated with this event that will go toward the Standing Up to POTS Research Fund. 

Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!

If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at 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

5K 2022 [00:00:00] Jill Brook: Hello POTS community. We are here at the Ninth Annual Standing Up to POTS, 5K and 2K. And we are here today with some of the people who make this event possible. We're gonna start with Dr. Cathy Pederson, our founder and president at Standing Up to POTS to ask her to give us a little background on the 5K 2K event. Cathy Pederson: Hey Jill, I'm glad to see you and be back here again. This is always an exciting day for the POTS community. We're here at Wittenberg University in Springfield. And I'm super excited because over the last eight years, we had raised over $86,000, but this year, in just one year, it looks like we're over $29,000, which brings our for all nine races together to $115,000. All of that money goes right into our research fund, and we use [00:01:00] that to fund top POTS researchers around the world. So we are just super excited to be here. I wanna thank our presenting sponsors. This is the first time for Normalyte to be a presenting sponsor and we are just thrilled to have them on board. And then Thrivent and Matt Buehrer who have really been with us from the beginning. And so Matt is actually a member of our Board of Directors and has really supported this cause for a really long time. So I'm really excited to hear what other people say and just to get this thing going. Jill Brook: Yes, and I just wanna emphasize what a big deal it is when patients raise the money and support the research. Because we here at Standing up to POTS fund studies that are gonna help today's suffering POTS patients. We give away the money, so we get to choose and we really are careful to look for studies that have practical help for today's suffering [00:02:00] patients. Next we're gonna move on to our volunteer extraordinaire, Kate Pederson, who has done so much for this event over the years. She is our social media coordinator. She edits the podcast. Her work is so invaluable as a volunteer at Standing Up to POTS. Kate, tell us about your participation over the years and in today's 5K and 2K event. Kate Pederson: I've been doing the 5K for my sister since its start in 2014, and initially I was running the races, but now I've moved into more of the director of social media role, so I'm working on t-shirt designs and more of the behind the scenes work for the 5K. Jill Brook: And Lindsay is our volunteer coordinator. She also works as an editor on the POTScast. She's responsible for making all of the transcripts. Lindsay, you're not in Ohio at Wittenberg University. Where are you [00:03:00] doing the event from? Lindsay Nakagawa: I'm participating virtually from San Diego. It's a beautiful day here today, and I'm glad that since I can't be there in person in Ohio, that I can join virtually and walk with my husband and friends here in San Diego. Jill Brook: Oh, that sounds nice. In San Diego and Mike, our sometime volunteer host and my husband. Where are you doing the event from today and why are you doing the event? Mike Brook: Well, Jill, I'm doing the event from just 10 feet to your left in Truckee, California. It's a beautiful day here and ski season is coming and that gets me really excited cuz it's time to get in shape and as you know, I have eaten a lot of Lucky Charms this summer. Jill Brook: Okay, so why do you participate and why do you support Standing Up to POTS. Mike Brook: Well, I participate because my wife either needs to be walking briskly or laying on the floor with her feet up and there's not a laying on the [00:04:00] floor with your feet up event. So that, that leaves us with the 5K/2K Jill Brook: awesome. Thank you for participating. Anything else anyone wants to say? Cathy Pederson: One of my favorite parts of the in-person event is getting people with POTS together in a room and letting them talk to one another. And so I'm always careful that I make a little time on this really crazy day to go in and say hello to those POTS patients. And almost always I walk into a conversation where they're saying, you have that symptom too. I thought I was the only one, and that is absolutely one of my favorite things about this in-person event. Jill Brook: It is really special. I know that on the POTS diaries, we always ask people how many other POTS patients they have met in person. We hardly ever find anyone who's met more than one or two. So this is a really fun opportunity. But for people like me who are far away [00:05:00] participating from California, it's special to me just to know that there's a whole community out there participating at the same time, all sending each other some love and helping to support this wonderful cause. Jill: Hello. Thank you for doing the POTS 5K 2 K. Are you a POTS patient or a supporter of POTSies? Rhonda: I'm a supporter. Jill: Wonderful. Okay. Do you know a POTSie? Rhonda: Yes, I do. Leslie, she is a dear friend of mine. I ran through the running community and as our relationship grew to, know each other and run together, hang out, do walks and stuff. And I work with her in I hope it's okay. I don't normally divulge my clients, but I'm a massage therapist and so I work with her and I think she's okay to share that. And through the years, you know, and not very many years , I noticed the difference in her health days and , she allowed me to ask more questions and kind of dive into the understanding of what POTS really is. And I finally had confidence this year to actually say postural orthostatic tachycardia syndrome, and say that big, long word, you know? And not fumble on it. And [00:01:00] so she is a huge inspiration to me because this is a, a lady that struggles on a daily basis whether it's, you know, on a low end or a high end and everything in between, and you wouldn't know. In conversations even on her hardest days when she's got the big sunglasses on when she's, you know, covered when she's got her cane, when she's walking in and, and I gotta sit a minute before I continue down the hall. Turn down the music please. And I don't have it blaring or anything, but turn down the music dim the lights more. Those, sensory sensitive days and functional days too. I've seen those nitty gritty. You know, down on the floor days. And then I'll see these tremendous days where she's run 32 miles in the mountains. Wow. Doing, doing a 50 k. She's a runner, she's a biker. She's a cyclist, I should say. All these fantastic things in between. And the thing that I think about her [00:02:00] also is that her generosity in how you feel when you're around her in her low days. So she's more concerned about your comfortability, about what she's struggling through than she is worried. About her cuz it's normal, I guess, for her, you know what I mean? Jill: That's so interesting. Do you just mind giving an example, like what is something that she would say? , what do you mean exactly by she's more concerned about your comfort? Rhonda: Well, , you know, my energy's a little higher energy and I may come into the situation with her and maybe I've said something and she's kind of in a weaker moment where she'll go, you know, I'm really sorry. She wants me to feel comfortable with the way she's responding to me. Does that make sense? It's just something that I've noticed that, you know, I don't just say don't apologize, but I know she's sensitive to how I'm feeling about her situation because she knows I can't really do anything about it, and I want to help. But I, I don't know what to. And she [00:03:00] just assures me that it's okay. You know, it's, sorry, it's just I'm having this issue or I'm not feeling, you know, Or like if we're out on a little run and we have to take a side turn somewhere because something needs to happen in private, you know, it's, sorry, but I'm just having GI issues today or something like that. It's like, no big deal. You know? We just talk about everything and I find it endearing. For the lack of a, a different word, that she actually cares so much about my perception of the situation. My comfortability be about it through the pain and struggle that she's in at that moment. Does that make sense? Jill: You guys are beautiful. I feel like the empathy you have for one another is so wonderful and the support, and she's worried about your comfort and you're worried about hers and. That is beautiful and you're such a good POTS supporter and friend. Do you wanna just maybe tell us who you are and where you're from? Rhonda: My name is Rhonda Bennett. I'm from Tip City, Ohio. I have a [00:04:00] business in Vandalia that's my studio, Mindful Massage and body work. And through the studio I used it as a platform to raise awareness and fundraising money for today. And I usually sponsor. As much as I can donate. And I started that off on, you know, Yeah, I'm gonna support. But I came to a point where, why aren't I not making more awareness about this and I can use my platform of this. Studio. So I put it together a basket, which I happen to have with me and I wish I could show it to you, but this basket filled, it was worth over $500. Different various gift cards, obviously from massage, but also from small business that Leslie and I both participate at that are small businesses in Tip City and in Vandalia, and a couple in Troy. And. So raffling off this, you know, expensive basket was easy because people were buying their tickets. And I mean I started it later than what I wanted to, but I've got great ideas for next year. I am an owner of Mindful Massage and Body [00:05:00] Work. I live in Tip City, my studios in Van Dahlia. I'm a massage therapist business owner, And I'm a runner Jill: I don't know what you're looking for so much. It warms my heart to know that there's people like you out there being so kind and generous and supportive. So thank you for being here and I hope you have a really nice run today. Well, Rhonda: it's my honor and my pleasure. And it's easy to give back when there's so much generous. Come back to you as well. You know what I mean? And Leslie gives me that she's very generous in her friendship and in her compassion and in her specialty. You know, she makes all these delicious treats. So one of these days you'll have to make a trip here and Jill: get a. I do wanna move to Ohio now because it seems like wow, there's so much kindness in Ohio. Oh, I dunno if everybody's Rhonda: like you. Well, we'd love to welcome you. So thank you for your time and your energy God bless you and be well. Thank you very much. And you guys be well . Take care.[00:06:00] Jill: Lily. Hello. It's so good to see you. How are things there today? Lily: It's going really great. We've gotten a lot of people already walking in. It was really interesting to meet all the POTS that have been coming, and it's been really fun talking Jill: So tell me about the POTSie Like would you be able to spot them? You know, we know that POTS is famously invisible, but do you think there are little signs that you would be able to pick up as a fellow POTSie. Lily: It's not only that we just have like an exclusive lounge for POTSies to bond. We actually understand that. It's kind of awkward to go up and say, Hey, do you have POTS? And then maybe they say No awkwardly trail off and then leave. So we actually have designed a way to identify POTSies and non POTSies and we. Use that by using different colored shirts so that people at the event know, Hey, you're a POTSie without having to do that awkward conversation. And it's been really helpful and it sparked a lot of conversations between a lot of different POTSies that come to the race. Jill: Wonderful. And I guess we should tell listeners that [00:07:00] you are the Lily of Lily Pederson fame, episode number two, I believe. The person for whom this entire foundation was begun. And can you tell us how you're doing? Are you participating in any of the walking or the five or two K today, or are you mostly helping with organizing? Lily: I'm mostly helping with organizing because I'm one of the. Kind of inspirations for this group. I help kind of facilitate the conversation between different POTSies. I introduce myself, I'm comfortable sharing my story, and that sometimes helps other people to become comfortable because I know that's not, Not everybody is in that place. Jill: And I'm sure a lot of people have listened to your episode and they're wondering, how is she doing now? Do you wanna just. Let them know quickly. Lily: I'm doing really great . I've improved since we've switched a few of my medications. It actually turned out that my Wellbutrin was causing me higher sympathetic surges. So when I would startle, I would startle really hard and I take a few beats to actually recover and now I [00:08:00] startle like a normal person would. So I'm prepping myself to hopefully travel and study abroad in Germany. And my classes are currently going really well. Jill: Oh my gosh. That is so exciting to hear. We are so happy for you. I know you need to go and keep doing your organizing stuff and send the next person in, but we are just so happy to see you. Thanks Lily. Lily: It was nice talking to you. Bye guys. Jill: Bye. Oh, also, what color t-shirt is the POTS? Lily: We actually have a light blue this year, so stylish kind of light sky blue with the white writing and we are rocking it Jill: Excellent. Thank you so much. Lily: Nice talking to you. Natalie: Hello. Jill: Hello. Thank you for coming to the Standing Up To POTS 5K. Do you wanna tell us your name and your age? Natalie: Natalie , 20. Jill: And do you have POTS or are you supporting somebody with POTS today? Natalie: I have POTS. Jill: Oh. Is there anything about your POTS that you're willing to kind of share? Like how long have you had it? How bad is it? Natalie: I had it since January. I was a dancer for five years. [00:09:00] It got to the point to where I couldn't really do it. I suffer from a lot of things. I have shortness of breath a lot. My heart races all the time. It gets very hard. Just trying to live with it Jill: yeah. Did it take you a long time to get a diagnosis? Natalie: I went like tooth and nail with my doctors. They didn't really know what was going on. I knew that I had a heart problem. They would do tests and say nothing's wrong, and I was kind of confused on why I was feeling like this if nothing was wrong. So I reached out to Cleveland Clinic and saw a neurologist and told her my symptoms and she's like, We're gonna give you a tilt table test. She gave me the tilt table test and that confirmed that it was indeed Jill: Once you knew that it was POTS, were you able to find very many things to help? Natalie: I still struggle managing with my symptoms. I'll drink the drip drop or the Normalyte or like the liquid IV and you know, try to help it with that. But I definitely still struggle and I did take heart medicine and it just made my [00:10:00] symptoms worse. Jill: So are you gonna be doing either the 2K or the 5K today or as far as you get, or, Natalie: Yeah, I'm gonna try to go as far as I can for the two K for sure. Jill: So how challenging is it for you to do that? Natalie: I'd say super challenging. It's definitely hard to walk long distances for sure, without, you know, getting the shortness of breath and Jill: stuff. Did you do anything to prepare to give you the best. Of making it without too much drama. Hopefully Natalie: I drink a lot of drip drop. Jill: okay. Do you have a nice day at least for the walk? Natalie: Yeah. It's definitely nice here. Jill: Have you met other POTSies? Natalie: Yes. Jill: Is that the most patsies you've ever seen in one place? Natalie: Yes. Jill: What is that like? Natalie: It's definitely good. It's nice to talk to people that, you know, struggle with the same thing as me because, I mean, POTS is common, but you don't see very many people with it very often. Jill: Well, thank you so [00:11:00] much. I know you need to get out and keep preparing and warming up, but thank you for talking to us and good luck today. Thank you for supporting POTS Research. Natalie: Thank you. Jill: Okay. Bye-bye Erica: Hi. Jill: Hello. Thank you for being here today. Do you wanna share your name and age with us? Erica: Sure. My name is Erica and I'm 29 years old. Jill: And where are you coming from today? Do you live right there in Springfield? Erica: I don't. I live in Dayton Jill: is that far away? For those of us who are not familiar with Ohio Geography Erica: it's about 30 minutes. Jill: Okay. And do you have POTS or are you supporting somebody with POTS? Erica: I have POTS. Jill: Okay. Can I ask what your POTS is like since we're all different? What's your flavor? Erica: My POTS can be debilitating some days. I just got my diagnosis six-ish months ago, give or take. They aren't sure if it's because of my motorcycle accident or it's post covid because I've [00:12:00] had covid a few times as well. But my cardiologist wants me to work on strengthening my parasympathetic system. He said just push through everything, exercise as much as you can. So whenever I have symptoms, I really try to push myself. Jill: So you sound really tough and like you've had a rough last year or two. You've had multiple covid and a motorcycle accident, and then POTS? Erica: Yeah. Thank you from six kids on top of that, Jill: Oh my goodness. Well, thank you for being here today. Can I ask, are you planning to walk run 2K 5K as far as you get Erica: 5K and I'm planning to run as much as I possibly can. Jill: Oh, good for you. How big of a challenge is that for you, given your POTS? Erica: Well, I've been conditioning for a while now and each mile takes me about 17 minutes. So we'll see. Honestly, we won't know until I get out there, get moving. I feel good. I'm a little nervous, but that's to be expected, so, [00:13:00] Jill: Yeah, absolutely. Do you do anything special to prepare for this big of an athletic event? Like did you eat or drink something special? Did you put on lucky socks? Anything like that? Erica: I don't have lucky socks or any of those really cool shenanigans, however, I do up my trace minerals for the day. Jill: All right. And then will this really wipe you out for the day or the weekend? How? How big of a price will you pay for doing this? Erica: That's a great question. One that I hadn't really thought about. I think that we'll see because I have been trying to train my body. Running is actually something that feels really great on a good day, so I'm having a good day so far, Jill: Excellent. And I know you need to get going, but can I just ask, have you met other POTS patients there and what is it like seeing so many POTS patients in one place? Erica: I have met a few so far. It's still early. It feels really, I don't feel so alone now. A lot of everyone that I've met is virtual [00:14:00] online, and so it's really nice to be able to sit and just hold space for each other and just know that, you know, we aren't alone sharing our stories. So yeah, it's really great. I'm super grateful to be here. Jill: We're super grateful to have you there. Thank you so much. I'll let you go so you can keep warming up and whatnot. But good luck today and I hope, I hope that you don't pay a big price for this. Erica: Thank you so much, Jill. Have a good day. Jill: Okay, thanks. Bye-bye. Katie: Hey Jill, how are you? Jill: Hello, Dr. Gorman-Ezell thank you for coming today. I think our audience is going to remember that you are our go-to mental health expert for all things with chronic illness, but today you are also an organizer of the Standing Up To POTS 5k two K. Can you tell us how the scene is out there? Katie: Yeah, you know, it's really busy. We've had a ton of registrants coming up, some of which were pre-registered and we've had a lot who are walk-in, so that's wonderful. It's more money to help our wonderful cause. Jill: Oh yeah. Can you remind [00:15:00] everybody what the money goes Katie: towards? Sure. The money goes towards funding research for POTS individuals with POTS and all of the money. A hundred percent of the proceeds are directed exactly to that research, Jill: right. Cause everybody's a volunteer. Nobody gets paid. Do you have good weather for the event today? Katie: We do. It's sunny, It's 70, which is a huge feat here in Ohio in October. Jill: Oh, good. And you know, one thing that is so exciting about this event is it's a chance for POTS patients to actually gather and meet one another when oftentimes they've only met each other online before. And so do the POTS patients gravitate toward one another? Are they able to connect? Katie: They absolutely do. We actually have a room set up inside for them all to mingle and get to know each other. And right now, just outside of where I am, they're all getting their photos taken. Jill: Oh, how nice. And is there anything special in terms of logistics that you do knowing that this is a [00:16:00] group that's gonna need to drink more than usual they might need to lay down mid run or walk. Katie: Yeah, absolutely. So we have tons of volunteers on the route just to help anyone with. Anything that they may need. We have a special lounge set up, like I said, that's full of all kinds of beverages. We have goody bags that we're handing out this year that have a variety of different hydration products in them. Jill: Oh my gosh. This all sounds like such a happy event. I wish I were there in person. I'm far away in California, but I know that you are an expert on mental health and it's improving my mental health just to hear about this happy scene and all the good stuff going on there. Katie: Oh, wonderful. No, I think this is great for everyone. We're gonna get some of those endorphins going and I think everyone's gonna feel great after this. Not to mention the bonus of all the money we're gonna make to fund the research. Jill: Oh, thank you for all your work. I know you need to be out there doing a million things to keep this going, but we appreciate you talking to us. And are you, are you participating? Five or two K Katie: [00:17:00] I'm gonna help organize, but my 10 year old son, Griffin is gonna go and try the 5K just to, to support everybody. He wants to be part of it, so I'm excited to cheer him on along with everybody Jill: else. Oh, beautiful. Right on. Well, thanks so much and I know that we are gonna be doing a holiday stress recording in a couple days, so everyone can also look forward to that. Yes, absolutely. Thank you so much. Okay, bye-bye. Alexia: Hi. Jill: Hello. Can you share your first name and your age? Alexia: My name's Alexia and I'm 23 years old. Jill: And are you a POTS patient or are you supporting someone with POTS today? Alexia: I am a POTS patient. Jill: Okay. So are you going to be doing the 2K, the 5k? Are you walking, running? Alexia: I'm going to be doing the 5K and the plan is to walk with a little bit of running mixed in there. Jill: Excellent. And did you have to have a special training regimen to get ready for today? Alexia: Yes. I've been doing aquatic therapy since [00:18:00] March, and then I just started a little bit of land type therapy with walking and we're working on a lot of cycling. Jill: Wow. Excellent. And are you kind of implying that you had been in a place where you could not do very much exercise before? Alexia: Yes, before I started any type of therapy, I wasn't even able to walk from one room to the other without having crazy heart rate, blood pressure changes lightheadedness. I couldn't even stand for more than a couple of minutes without having those issues. So this is a really big step for, oh Jill: my God, oh my gosh, this. Big deal today. That's wonderful. So do you have anything that you would say to other POTS patients who are currently in the place where you used to be, where they cannot stand up very long and they cannot walk to another room? Alexia: I would say don't lose hope that there's going to be brighter days coming. You know, there's things that you can do to get back on your feet and it's not going to be easy. It's going to take time. So be patient with yourself and be forgiving to yourself, and [00:19:00] also to just not get discouraged and know that you can train your body. You'll have to go at your own pace. It might not be the pace that you went with before, but you're going to be able to get there Jill: And did you get a little stronger every day or did you have times where you would go backwards or have setbacks? Alexia: I definitely had setbacks, yeah. And those were super frustrating, but I just had to learn to take care of my body during those times and be able to rest and get back on my feet, and then I would be able to move forward again. Jill: Okay, the big question, have you gotten to a point where you can actually enjoy exercise? Or is it that you can just do it and tough it out, but it's still so hard that there's no way in heck you would actually enjoy it? Alexia: I would say that I've gotten to the point where I love swimming. I love swimming. I love the way that it makes me feel when I'm in the water. I love exercising in the pool. I'm getting there on land. I'm working my way towards enjoying exercising [00:20:00] on land again. Jill: Oh my gosh. Well, we are all excited for you and pulling for you and cheering for you. And it's so great to hear your story and thank you for being here. And thank you for supporting POT'S research while you do it. Alexia: Yes, thank you so much. Jill: Okay, we'll let you get out and warm up. Bye-bye. Alexia: All right. Thank you. Bye. Oh my gosh. Listeners, I wish I were there in person. I'm getting chills. I almost feel like crying, hearing all these people's story. Matt: Hello? Hello? Hello? Jill: Hello? Hello? Hello. Is that Matt there in running clothes? Matt: Yeah. Well, no, in serving clothes, I'm serving, checking in and everything like that. Jill: Well listeners, this is Matt Buher, who is one of our board members and he makes a lot of our financial stuff so much better than it could be. He's responsible for getting us a lot of matching funds and making it possible for us to donate so much money to POTS research. So can you tell us some what you're up to today and what you're seeing out there? Matt: Well, first, it's [00:21:00] a beautiful day here in Springfield. It we couldn't have asked for better. Beautiful fall crisp day. Leaves are turning colors. So as the runners are running around the course, they're gonna get some beautiful views of trees in their fall colors. And we've got quite a few people signing up that haven't signed up on the internet. So we're getting a lot of walk-ins and we are busy passing out all the t-shirts and the goody bags that are there from our sponsors. Jill: And speaking of sponsors, can I just ask you to brag for a second and tell us what you have been able to do with your organization for Standing Up To POTS? Matt: Yeah. Well first you know, as I donate to any organization for the company I work for Thrivent they are so gracious and they do matching dollars for any of my donations to an organization. And as serving on the board they also will double that match up to certain limits. And so if I give a thousand, they donate 2000. Which I am just so blessed. Jill: Well, we are so grateful because we know that you [00:22:00] are sometimes kind of behind the scenes not getting a lot of attention, but you make a lot of things possible for us and and we're just so grateful. And, today sounds like you're doing the server thing instead of writing the checks. Matt: I am serving those who are coming to sign in and we are collecting donations from them. And yeah, it's amazing where this has gone. This organization, I remember just sitting down at a kitchen table with Cathy and we started talking about how we can support POTS because it was just not out there in the national forum and. It's amazing the things we are doing, the changes we are making to make it aware awareness out there. That's the, that's the big thing, I think. And then helping with research. I think it's just been amazing how this organization has grown over the years. I'm real happy to be a part of it and to be you know, financial supporter as well. Jill: And I think you've been there from the very beginning. And if our listeners have listened to all the episodes, they will know that Standing Up To POTS started when Dr. Cathy [00:23:00] Peterson's daughter got POTS and her daughters wrote a book. One daughter wrote the words, the other one made the pictures. And I believe you were there from the very. Start to help get that published and printed up and sold, and that raised the very first few dollars that have now turned into over a quarter million for POTS research. Matt: Yeah, Jill, That was a $250 thriving action team that our members are able to do. And that was the start of. This amazing journey. It's, it's amazing. And that book is still around. I mean, I've seen copies of it throughout the various different locations, doctor's offices and things like that. Jill: Well, it's so inspiring to know that, that from tiny grassroots things, these really wonderful, bigger things can come. Matt: Oh, you bet. You bet. So I better get back out there. There's a lot of people wanting to check in Jill: Thank you Matt. Awesome, thanks Jill bye. Debbie: Morning. Jill: Good morning. Can you tell us your first name and where you're coming from today? Debbie: Yes. My name is Debbie [00:24:00] and I'm from the law firm in Martin Browne Hull and Harper. Jill: What brings you here to support POTS today? Debbie: Well on behalf of Martin Browne a few of my coworkers come every year. I think this is our third or fourth year to participate and plan on doing it in the future. We have an employee that's a paralegal at Martin Browne. Her daughter has. POTS and she's a freshman at Miami University in Ohio, and she's doing pretty well. She has run cross country and track all through high school and done really well, and she lives with POTS the best she can, but it's a day to day struggle. Jill: Oh, well we feel so honored that you know what POTS is and that you're doing this for a coworker's daughter, and how many from your team is there today? Debbie: I believe seven signed up. I'm not sure if a couple are gonna be able to make it due to health issues. But it seems like every year we get a couple more people that join in with us and, you know, it's a, a great way to come together. [00:25:00] As far as morale at the office, as well as supporting an employee's daughter. Jill: Oh, that's so beautiful. Thank you for your support and thanks from all of us who have POTS and are gonna get better research. Thanks to you guys participating. Debbie: Yes. I hope they continue the research and we don't even have to worry about it in years to come. Jill: Right on. Well, I know you need to get warmed up. I'll let you go, but thanks and good luck. Oh, thank you very much. Bye-bye. Okay, bye-bye. Lona: Hello. Jill: Hello. Thank you for being here today. Can you share your name and what brings you out to support our 5k 2K Lona: I'm Lona Bowman and my daughter Leslie has POTS. We have been watching the Standing Up To POTS group grow have been participating in the races since they first began every year that we can. And we've just watched. Activities of Standing Up To POTS increase and increase and the good that [00:26:00] they're doing and the research that they're doing and the patient support that they're doing. Grow and grow and we think very highly of the organization. Jill: Oh, well thank you and thank you for supporting it so much over the years. How have the races changed since the first one? I think we're on the ninth annual one. Lona: Well, there's a virtual option now. I'm not sure that there was when it began. The routes changed a little bit but what hasn't changed is people who are really excited about participating and supporting the organization. And we see friends every year that come and support through the race also. Jill: Oh, that's wonderful. And then does your daughter enjoy getting to meet POTS patients in person? Like is this the place where you probably see the most in person other POTS patients? Lona: She's a runner and she knows running friends who are here. Frankly, I think she tends to catch up with her running friends who are here and thank them for coming to support her and the POTS research. [00:27:00] Jill: Oh, that's excellent. Yeah. Well, please thank her for being such a good ambassador and bringing friends here and I know you have just a couple moments till the race starts, so I'll let you go, but thank you for being here every year. I feel like you should get a special T-shirt for being a oh, for being here. Lona: We've been out, we've been out of town a few times, and in fact, today she's in a wedding, so she did the race virtually. But, but we participate in one way or another every. Jill: Oh, that's beautiful. Thank you. Good luck out there. Lona: You're welcome. Thank you. Jill: Okay. Bye-bye. Bye bye. Grayson: Hi. Jill: Hello. Thank you for being here today to support POTS Research. Can you share your name and your age? Grayson: Yeah, so my name's Grayson and I'm 23. Jill: And are you a POTS patient or are you someone supporting a POTS patient? Grayson: POTS patient. Jill: Okay. Can we ask you to share what your style of POTS is like in your body Grayson: with my POTS, I go both high and low with my heart [00:28:00] rate, and then the same thing with my blood pressure so they like to tell me, I'm a very complex case of POTS, so not a lot of medications helps me. But we're looking into IV therapy hopefully soon, so, Jill: Okay. Yeah, so I can see where that would make it tricky that you have to balance the lows and the highs. Are you gonna be walking today? Running today? Grayson: I'm hoping to walk. We'll see, I brought my walker so we'll see. Jill: Yeah, I was gonna ask, how big of a challenge is it for you to get here, get out there? Because I have to say that for me as a POTS patient, it sounds really intimidating to have to show up on a certain day at a certain time and perform. Right. I'm doing it virtually. Yes. So I can wait until I feel great and then go do it. How is it for. Grayson: I would say that like, it's definitely overwhelming because you never know how you're gonna feel. You never know if you're gonna be able to go or not. But I'm definitely just excited that I made it here. If I can walk, cool, but if not, that's okay [00:29:00] too. Jill: Okay. Yeah. Did you do anything special in preparation for today? Grayson: Absolutely not. No. I was just like, cuz I actually, it's been pretty bad. I think I've been taken by squad like three times this past month. I go to school so they like, if I pass out, they have to call 9 1 1, which. It is what it is, but so I'm just like, You know what? We'll just wing it. Like if something happens, it'll be fine. At least everybody here understands what POTS is, so, Jill: Yeah, absolutely. Okay, well, are you nervous? I see that the race starts in three minutes. How are you feeling? Like, what do you think your blood pressure and your heart rate are doing right now? Grayson: My blood pressure is probably high. It's been running high lately. I'm like sitting at 85 right now, so we'll see. It'll go up once I get up. Jill: Okay. Well, I know everybody listening is wishing you all the best and I hope, I hope it's fun. I hope you have a successful time out there, but just thank you for being here and helping to raise awareness, helping to raise funds for research. And I know that, you know, you're working harder to be here than a [00:30:00] lot of people would have to work to show up at a fun run. So thank you. Thank you, Grayson: Thank you for the podcast and everything. It's helped a lot, so I appreciate it a Jill: lot. Oh, good. Well, feel free to check back in with us later. Tell us how it went and we could do a POTS diary or something if we wanna go deeper. Grayson: All right. Sounds. Jill: Okay. Take care. Goodbye. Take care. Hey. Yeah. Bye. Well POTS community, I think all of the walkers and runners are at the starting line right now. They're getting ready to go. I so wish that I was there. I can feel the vibe. I get tingles. I almost have tears in my eyes. I can see how excited everyone is to be there and to be around other POTS patients and to be in a place where everybody knows what POTS is and everybody understands. And if you have to lay down and put your feet up in the middle of the race course, Everyone's gonna be there to support you, and heck, maybe even bring you some Gatorade. So that's it for [00:31:00] today, and we hope you'll join us next time We do these annually, they always raise awareness and they raise funds for POTS research. Well, thank you for joining us and I hope you enjoyed having a little window into today's event. We here at Standing Up To POTS, love putting on this event to raise awareness to raise funds for POTS research, and we'll be doing it again next year. So feel free to join us then. Okay, thanks. Bye-Bye.

Other Episodes

Episode 56

April 26, 2022 00:29:01
Episode Cover

E56: POTS Diary with Amber from NY

Amber, a freshman in college, describes her journey with POTS. She was lucky, and was diagnosed in 6 months. In her case, a lot...

Listen

Episode 113

January 31, 2023 00:39:56
Episode Cover

E113: Academic POTS in Australia and Life as a POTS Mom with Celine Gallagher, PhD

While Dr. Gallagher was professionally involved in POTS research, her daughter was diagnosed with POTS. Her background couldn't prepare her for the reality of...

Listen

Episode 138

May 16, 2023 00:30:23
Episode Cover

E138: Advice from Both Sides of Healthcare with Dr. Melanie Hoppers

Dr. Melanie Hoppers has a unique perspective on POTS - she learned of it when her daughter became ill and now dedicates her medical...

Listen