Episode Transcript
10th Annual Standing Up to POTS 5K/2K: Live Recording
[00:00:00] Jill Brook: Hello fellow POTS patients and beautiful people who care about POTS patients and people who don't exactly have POTS but have something close enough and rare enough that you don't have your own dedicated podcast yet. Thank you all for joining us today as we celebrate the Standing Up to POTS 5k and 2k or whatever distance you can manage event to raise funding for POTS research.
This is our annual time to reach out to donors, spread some awareness, get some research funded to help today's suffering POTS patients, and to have some fun. Participation can be virtual. For example, Mike and I will be doing the 5k from Northern California today. But there is also an in person event on the beautiful campus of Wittenberg University in Springfield, Ohio, where our president and founder, Dr. Cathy Pederson, is a neurobiology professor. So, this morning we're going to speak with some of the POTS patients and POTS supporters who are there getting ready to do the event. Now first I'd like to say a big thank you to the event's sponsor, Normalyte. When you are choosing your next electrolyte mix to try, please keep in mind that Normalyte has been a generous sponsor to us for years now and they really care about POTS patients.
Okay, as we get started, let's speak with the woman who started all of this, Dr. Cathy Pederson, our president and founder of Standing Up to POTS. Dr. Pederson, thank you for being here today. What is the scene like?
[00:01:32] 5K/2K Participants: Ah, Jill, we are so excited. It's been raining here for two days, but the clouds have parted, the sun is out. It's a cool, crisp fall day. And we're ready. We're ready for the event. We have more people with POTS coming than we ever have before. We have 32 people with POTS registered for the in person event today, so really stoked.
[00:01:57] Jill Brook: Well, I know that one of your favorite parts is always to get to see the POTS patients come together and meet one another, because oftentimes it's First time they've even met someone in person who had POTS. And you have a place for them to all go and meet one another?
[00:02:12] 5K/2K Participants: That's exactly right. And it is my favorite part because that's where the magic happens is in that room. And so we reserve a room on campus and they can go and put their feet up. We have a taste test of some different kinds of electrolyte drinks this year but they can just relax and hydrate before the event starts.
And every time I walk through that room, it seems like someone's saying, you have that? Me too. Which I think in this population is so special.
[00:02:42] Jill Brook: Yes. And I know you've given me strict instructions to only spend five minutes with each person, because I even get excited to talk to so many people.
[00:02:50] 5K/2K Participants: Yeah. It's, it's an amazing day. I wish more people could experience it really.
[00:02:56] Jill Brook: Well, I know that there's people all over the country and all over the entire world. So I want to just send a shout out to all of them too, that we're all together in spirit. And I know that this is a purely volunteer event, right? I know that your university helps out, you help out, your whole family is helping out so that every single dollar possible can go straight to the research, right?
[00:03:19] 5K/2K Participants: That's right, it looks like without walk in fees and that sort of stuff today, we're over 23, 000 for the Standing Up to POTS Research Fund, so that's pretty amazing, and I agree with your shout out, we've got more than 275 people around the country doing the virtual 5K, 2K this weekend, so really excited to have them joining us in spirit.
[00:03:43] Jill Brook: Yay. Yay. Well, we thank you for doing this year in, year out. This is year 10, right?
[00:03:48] 5K/2K Participants: is, can't believe it, 10th anniversary,
[00:03:51] Jill Brook: So I know that I'm a big fan of routines because I like knowing that each individual year is just really part of a bigger thing. And so when I think of 10 times 23, 000, and I know some years it's been higher and some years it's been lower, but that starts to really, really add up. Yeah, it just makes me excited because as I'm thinking about all the studies we're going to get to fund to help today's suffering POTS patients, which is our charter.
[00:04:19] 5K/2K Participants: absolutely. And let me give a shout out to Jill, who is up before 7 o'clock, her time, to be with us today. So this is a dedicated host of the POTScast. I gotta run, Jill, but,
[00:04:32] Jill Brook: Okay, good luck.
[00:04:33] 5K/2K Participants: you as always. Bye, my friend.
[00:04:36] Jill Brook: Thank you. Bye bye. Due to the magic of podcasting, nobody knows if I'm wearing pajamas or not. I'm not gonna reveal, but it is early here.
And you're Rhonda. Did I speak to you last year?
[00:04:50] 5K/2K Participants: Yes, you did.
[00:04:51] Jill Brook: And you know what, last year I got in trouble for talking too long to you because you're so delightful. So I'm have to set a timer today because they're only giving me five minutes with each person. So Rhonda, you're back again.
Remind everybody who you are and what you're doing today and why.
[00:05:05] 5K/2K Participants: Well, my name is Rhonda Bennett and I was introduced to POTS and it took me a few years to figure out how to say it correctly. So postural orthostatic tachycardia syndrome and yes, and so I was introduced to it by my friend, Leslie Surdick and her family and I just love her. I think she's a positive influence on not being defeated by POTS, and just, you know, fighting back with grace and dignity and beauty, and it just really to me, she's a superhero because she does so much, and this 5K is just a small example of the vast ability to overcome such an obstacle in your life, in your health and wellness, and it gave me a newer, better respect for health days. Just understanding that, you know, not feeling bad doesn't have to be worded that way. It can be I have a good day and I have a bad day. It's a health day. And so it kind of gives you a better understanding of that kind of feeling, even with somebody like me, that doesn't have POTS, you know, I kind of assess myself and give myself that grace and that dignity for what I'm feeling for each day.
So she's taught me so much on so many different levels that I really want to, you know, extend that out into the community and I'm a massage therapist that I see a lot of people from all different types of pathways in life that have no idea about postural orthostatic tachycardia syndrome.
And they seem to be impressed when I can let that roll off my tongue.
[00:06:44] Jill Brook: Well, we're certainly impressed that you can say it and that you take the time to learn about it and care so much about it and come out here. Now, are you always a walker or jogger or is this a special activity for you?
[00:06:58] 5K/2K Participants: Well, I'm always a walker and a runner. So, so this is just another bonus for me to push myself out there. Yeah.
[00:07:07] Jill Brook: wonderful. When you are out there, can I ask what do you think about as you're running?
[00:07:12] 5K/2K Participants: I'm glad you asked. I think about when it gets hard, I really push through and I'm like, this is nothing compared to what people with this I don't even want to call it a disease or an illness. It's just part of their life now. And it's something they have to work around because Everybody, I think, has their element of things that's hard for them to work around.
To be honest and to be fair about it, I think of a lot of people that went through difficulties. Like my dad was in the war. He saved people from dying, so I can't imagine what he went through, and I equate that, really, these kinds of struggles with people with POTS as well.
I mean, I don't know if that sounds odd, but the struggles that you have to fight and overcome to survive. and live, you know, every day to your fullest. And every day's fullest isn't always 100 percent glass full. And when I'm out there and I feel like I'm getting weak, I really try to pull up from my innermost being to push and achieve.
To finish well and to be happy about it, no matter what I might have expected pre race in this particular case.
[00:08:31] Jill Brook: What a beautiful attitude. I just love that so much. It sounds like you just have an appreciation for all the hard things that everybody goes through and you basically reflect on, on just kind of the humanity of that. And it sounds like you feel grateful for whatever you do have in the tank to finish your run.
[00:08:52] 5K/2K Participants: Yes, I am grateful. I am grateful.
[00:08:55] Jill Brook: Wow, I almost feel like you could be a preacher of some sort. You just say beautiful things. Thank you for starting off our morning, just reflecting on some lovely, lovely thoughts. Have a great race
[00:09:05] 5K/2K Participants: Thank you kindly. Thank you kindly. You be well and I hope I see you next year.
[00:09:09] Jill Brook: Oh, thanks.
[00:09:10] 5K/2K Participants: I'll try to look a little better running today. Bye.
[00:09:15] Jill Brook: Good morning, everybody. We have another voice that you're going to recognize, and it's Lily! Lily from episode two, I believe. Lily, how are you today?
[00:09:27] 5K/2K Participants: I'm doing great! It's nice weather out, we're getting ready to race!
[00:09:31] Jill Brook: Excellent! What are you doing today? What's your role?
[00:09:35] 5K/2K Participants: I will actually be hosting our POTS only group. We always have a special lounge where POTS people can go desensitize, de stress, have salty snacks, and I will be helping facilitate that conversation, meeting others, get some group photos, and just kind of commiserate on our experiences.
[00:09:53] Jill Brook: Oh my gosh, that sounds amazing. Are people starting to show up there in the POTS room?
[00:09:58] 5K/2K Participants: Yeah, we've gotten a couple people showing up, so we're getting ready to get started.
[00:10:03] Jill Brook: Excellent. And how many volunteers do you have there today working on all of this? Like, how does this whole thing get carried off?
[00:10:10] 5K/2K Participants: It's hard carried by my mom. She does a lot of the work throughout the year, starting in the summer and also mostly starting right after the race ends to get this race facilitated. We have a couple of volunteers I believe we have seven volunteers this year, so a little bit on the low side, so we're all trying to Shoulder that load to make sure that everything goes smoothly for our guests.
[00:10:32] Jill Brook: Yeah, you know, sometimes I think that our listeners probably don't realize what a small organization this is and how everybody involved actually does quite a lot of work to raise all these hundreds of thousands of dollars that have gone to POTS research. And so I think it's good for them to be reminded that it's just a few people.
And if you ever wondered if you can make a difference. So you absolutely can through volunteering because some of these little tiny organizations like us end up being able to do great things. Okay. So I know everybody who has listened to your episode is going to be saying, how's Lily doing personally?
[00:11:05] 5K/2K Participants: Things are actually going great. I'm currently in senior year of college. I'm getting absolutely owned by my homework and the amount of it, but that's okay. I'm really excited. It's kind of bittersweet. It's sweet that I got this far, but it's also kind of bitter because I'm going to be leaving my friends behind, but I'm really excited for that next chapter in my life to enter the workforce, hopefully after graduation, and get a job in cybersecurity.
[00:11:31] Jill Brook: Awesome. Awesome. Well, thank you, Lily. And I know that you're needed out there , but I know everybody's sending good vibes your way. Thanks for everything you're doing today. Hope you have a good time.
[00:11:41] 5K/2K Participants: And thank you, and thank you to everyone who's either listening to this podcast, donating, or just being active in our community. You all are really making a difference in helping spread the word and spread awareness.
[00:11:52] Jill Brook: Right on. Okay. Thank you, Lily. Have fun out there.
[00:11:56] 5K/2K Participants: Will do. Bye.
[00:11:57] Jill Brook: Hello. Welcome. Are you a runner today or a walker?
[00:12:02] 5K/2K Participants: I'm a runner today.
[00:12:04] Jill Brook: Okay. Do you mind telling us a little bit about you?
[00:12:07] 5K/2K Participants: Yeah. I'm Amari. I'm from Traverse City, Michigan. So pretty far up north the state. And I'm a senior in high school this year.
[00:12:15] Jill Brook: And do you have POTS or do you know somebody with POTS?
[00:12:18] 5K/2K Participants: have POTS. I was diagnosed about three years ago with it.
[00:12:21] Jill Brook: Okay. Do you mind telling us a little bit about what your POTS is like?
[00:12:25] 5K/2K Participants: Yeah I get a lot of chest pain and, like, pain radiation a lot of dizziness and brain fog. My blood pressure, like, plummets, it goes really far down, and then my heart rate really skyrockets.
[00:12:38] Jill Brook: So how is it that you're doing the event today? Did you have to really work hard to get to a point where you could do it? And are you doing the 2K, the 5K? What are you doing?
[00:12:46] 5K/2K Participants: Yeah, I'm gonna run the 5k. I have worked on it for like the past year. The past year I really have been trying to focus on like learning to be active with POTS and trying to learn to like build strength and muscle and endurance but like also Live with it and being able to control it somewhat. So the past year I've been really working on on running longer distances. I ran before I got diagnosed and then after it was like I had to adjust. But I've worked hard to build up the endurance with it.
[00:13:19] Jill Brook: Excellent. And do you need to do anything special as a routine? Like special warmup, eating, drinking something, or what do you do to prepare?
[00:13:27] 5K/2K Participants: Well, I always have a salt packet in my shoelaces. Whenever I'm running, I have a salt packet from any fast food restaurant or anything like that. It's always with me. But usually I have an electrolyte powder or something like that in my water when I'm running, so I'm constantly getting the salt and the electrolytes while I'm running.
[00:13:45] Jill Brook: And what do you think about when you're out there, when things start to get tough?
[00:13:49] 5K/2K Participants: Honestly, I think about how lucky I am that I can be running right now, because I know plenty of people who can't run with it. So, I think about how grateful I am that I'm part of the percentage that can run even though I have it. And also all the supporters who, like my friends and family, have been so helpful to me with supporting me and just always being there and listening even though they might not visually see the illness.
So honestly, that keeps me going. I think about the people who have really been there for me.
[00:14:19] Jill Brook: Oh, that's so nice. And I only have about 30 seconds left because they're making me only spend five minutes with each person. But is there anything you'd like to say to people listening out there who have POTS or who care about POTS patients?
[00:14:33] 5K/2K Participants: Yeah, I would have to say, like, anything helps. Just being aware and educating yourself about it, and kind of taking people's word when they have something going on. Because you can't always see it, most of the time you don't see it, you just have to take the word on it, and just knowing what it is it goes a long way, honestly.
[00:14:51] Jill Brook: Beautiful. I couldn't agree more. Okay. Well, thank you for talking to us. Good luck out there. I hope you have a lot of fun and a successful race.
[00:15:00] 5K/2K Participants: Thank you very much.
[00:15:01] Jill Brook: Okay. Take care. Bye bye. Okay, while we wait for our next person, I just have to say everyone is so lovely and they have such beautiful attitudes and that brings me again to just want to thank Normalyte. You know, they are really good partners in the POTS community because they not only sponsor events like this, but But they have actually sent us ideas for guests on the POTScast.
So I just want to thank them for that. They're not a faceless corporation. They are people who genuinely care about us POTSies. So as I'm reflecting on people who have, you know, lovely attitudes and helpful orientations to this community, I just want to thank them again. Thank you, Normalyte.
[00:15:40] 5K/2K Participants: Hello,
[00:15:41] Jill Brook: Hello! Good morning! Who are you? What are you doing here? Are you a runner, a supporter, a patient?
[00:15:47] 5K/2K Participants: I'm going to be a patient walker. My name is Joe. First time at the POTS walk and stuff, so very recently diagnosed as well, so taking a lot in.
[00:15:59] Jill Brook: Yeah! Well, welcome! We're so happy to have you here. This is probably not a club that you wanted to be a part of, but welcome! Yeah, do you want to tell us a little bit about your POTS?
[00:16:12] 5K/2K Participants: Yeah, sure. So I've had type 1 diabetes for about 16 years. And just last year I had a, actually had a really bad seizure event and just some symptoms after that event. Just manifested and I thought I was celiac because I was having lots of bloating, but then I was playing tennis a lot and I was trying to get back to work.
I was just getting tired and I couldn't walk to the car anymore. I was like, this is not normal. Went to the ER and they're like, there's nothing wrong with you. Go back home. But finally I pushed myself to go to the Cleveland clinic this summer and they diagnosed me with POTS by doing the tilt table test. And yeah, that's kind of why I'm here now. I'm trying to meet the right specialists, because as it's just really hard to find the right people to talk to, and the specialists to talk to, and... You know, my diabetes doctor was like hands in the air, my gastro doctors were like hands in the air.
So I finally started to find some people to talk through this with and start working on some of the symptoms. So
[00:17:12] Jill Brook: So, when you got the POTS diagnosis, were you relieved or were you like, no, that's not the one I was hoping for?
[00:17:19] 5K/2K Participants: I know, cause like with all these symptoms, there's like 80 things you could possibly, you know, get diagnosed with. I was like, Oh, well, it's 90% women that get this or some kind of statistic like that. So I really wasn't thinking about it, but then onceit actually your rheumatologist that sent me to the POTS clinic at Cleveland Clinic and she was like, have you heard of POTS?
I'm like I have but like I don't think I have that. But yeah, it's it's interesting because since there's not a lot of like Definite treatment options, like they were going to give me a beta blocker but with my type 1 diabetes, that actually stunts my ability to feel my low blood sugars, and I could have really bad hypoglycemic events, which is actually what triggered the seizure last year. So it's like there's not a lot of available medications right off the bat for me, so it's kind of like All right, now I kind of know. I can see my heart rate and kind of understand that. So understanding is great because I think for the good part of this year, I just didn't have the understanding, which was driving me nuts and driving my wife nuts and my family.
So on the road now, I feel like to get some, you know, actual answers and treatments and yeah, just trying things out. So yeah, maybe not the exact what I was looking for, because I already, already were dealing with a chronic illness with type 1 diabetes was a lot of my life. So it's kind of like, just, okay, I finally getting used to that. And then here's another one. Like, here's another thing to kind of think about. So
[00:18:34] Jill Brook: I know one thing that I've had to get used to in life is that it's not like everybody has their allotment of bad health news, right? Like just because you had one bad one doesn't mean that you're it, you're done, you got your fair share, you
[00:18:47] 5K/2K Participants: almost the opposite. It's almost like, I was like, I was just talking to someone in our little meeting room here and she's like, Oh yeah, I had Crohn's disease. And now like I'm dealing with this. So yeah, I think it's good as the same way, like you feel like more resolved than maybe someone else might have if this is POTS is their first experience with.
You know, something like this where I've been kind of used to the unknown and the mysteriousness of health care . So just still kind of working on that still, you know, doing therapy and just trying to deal with that whole mental aspect of it is still like another kind of battle too.
[00:19:19] Jill Brook: Yeah, now you must be making progress though, because you said at one point you could not walk to your car, and now you're walking either a 2K or a 5K, so do you want to talk about that, like how you got to where you are today, and how difficult is this going to be for you to walk this distance?
[00:19:37] 5K/2K Participants: I think the, the unfortunate answer to that is that I've been doing a lot of nothing, which means like I haven't been working. I haven't been playing tennis at all. I basically just stay home a lot. Because I've been having so much period of rest and getting better, I kind of just know my limits.
I'm like, okay, I'm going to go out and run this errand today, or I'm going to go grocery shopping. I kind of have to just count my spoons, you know, and it's a lot of self management that way. But unfortunately it's because I had to cut a lot of things out and say a lot of no's to a lot of things that I wanted to say yes to, but that, again, that affords me to still do some things like, like this, and I'm going to be walking to 2K. There's still part of me that's like I still have this like post exercise like tiredness and like malaise and stuff so we'll see how I do after the 2k but I think like I try to budgeted my time so that okay like I know tomorrow will be like a lot of just laying around and things like that so just just kind of managing it and like I said hopefully with the treatments I can actually do more.
I just talked to an OT and a speech therapist and like a bunch of people yesterday and they're like our goal is to like try to get you maybe back to work or figure something out there so I can kind of get out the house more and talk to more people and things like that again, so,
[00:20:48] Jill Brook: Yeah, absolutely. Well, thank you for being here. Thank, thank you for using some of your precious energy. And yeah, I know that everybody listening is wishing you all the best. We only have like 30 seconds left, but is there anything you'd like to say to the POTS community out there listening?
[00:21:06] 5K/2K Participants: No, yeah, just the fact that you guys do what you do. I mean, I live in Dayton, so not too far away from this event and Lots of great like POTS resources. Just the fact that the resources are out there. A lot of stuff that I was blind to, so I say just keep your head up as best you can and keep looking for those resources, you know, reach out to those communities online and that's what's been helping me the most is that there's a lot of hope.
We know the bad things, but there is a lot of hope that's out there to find. So that's why I'm glad to be here. So I'm talking to you.
[00:21:37] Jill Brook: Oh, beautiful. Well, awesome. Thank you so much for talking to us and good luck out there.
[00:21:43] 5K/2K Participants: Yeah, thank you, Jill. Take
[00:21:44] Jill Brook: Okay, thank you. Bye bye.
[00:21:47] 5K/2K Participants: Hello,
[00:21:48] Jill Brook: morning. Hello. Welcome. Can you tell us a bit about yourselves? What brings you here today? Are you patients, supporters, runners, walkers? What is up?
[00:21:57] 5K/2K Participants: patient, supporter, and we both run.
[00:22:01] Jill Brook: Excellent. Did you come far to be here today?
[00:22:04] 5K/2K Participants: We're just north of Dayton.
[00:22:06] Jill Brook: Okay.
[00:22:06] 5K/2K Participants: 30 minutes.
[00:22:08] Jill Brook: Okay. Is this your first time being at a Standing Up to POTS event?
[00:22:13] 5K/2K Participants: No, we've been coming since at least 2016.
[00:22:17] Jill Brook: Wow. Excellent. Thank you.
[00:22:21] 5K/2K Participants: involved most of the years that we could, except for like when we've been out of town or something, so.
[00:22:26] Jill Brook: Right on, well thank you for being here today. Can I ask a little bit about your POTS, do you want to kind of say what flavor of POTS you have?
[00:22:34] 5K/2K Participants: Taste the rainbow. I have... Really heavy fatigue. I guess I have a lot of, other diagnoses that have come with the POTS or before or after the POTS. MCAS, some gastroparesis, heavy levels of mold, parasites, fibromyalgia, raynodes. Oh my gosh, I know I'm forgetting things. That's okay, that's a pretty good amount right there that you're dealing with.
[00:23:04] Jill Brook: Yeah, can
[00:23:05] 5K/2K Participants: normal POTS stuff.
[00:23:07] Jill Brook: yeah, yeah, that's a lot to overcome to be out here early in the morning on a cold day, running, I mean how hard did you have to work to be able to do this today?
[00:23:18] 5K/2K Participants: Well, actually, I've taken a year off of running. The doctors advised me to take a year off of running to help my adrenal system recover. I also have secondary adrenal insufficiency and so this is actually the last POTS race was my last run and then so this is my first run back so it's a big celebration day for me.
[00:23:41] Jill Brook: Oh my gosh, congratulations!
[00:23:45] 5K/2K Participants: but yeah running It's something that I have fought incredibly hard to be able to do and an aspect of my identity that I never want to lose. So taking that year off in order to hopefully further my health You know, it's living small now to live large later, hopefully, and so it's a big day of celebration.
[00:24:12] Jill Brook: Oh my gosh.
[00:24:14] 5K/2K Participants: And she's done really well in the past. This whole year she's walked, I mean, she's walked a lot, so it's not like she's been inactive. Walked, biked she's pretty active actually, and she balances things pretty well. But you know, like in the past she's done marathons, she's done ultra marathons, like she's done a 31 mile race. She does pretty well, plus we have a red heeler at home, so if you know anything about cattle dogs, they are very active, so just keeping up with him is tough.
It takes both of us for that, and she's a great healer mom. So
[00:24:47] Jill Brook: Wow. Wow. Oh, well, you know what? I can just feel every single person listening to this podcast, just wishing so much good energy your way for today. Oh, I mean, I cannot imagine to be somebody who probably literally It has enjoyed running 31 miles in the past and then gets to a place where you're told that you need to not do any of it to heal.
I know that for myself, when I, when I can't do something like that, it's the endorphins, right? You get so many endorphins from being active and when that all comes to a screeching halt, oh my goodness, the brain is so unhappy for a while. And I just can't imagine what you've been through and and are you nervous about today?
Is it gonna be a big challenge?
[00:25:45] 5K/2K Participants: No, no, I'm not nervous about the day. It's more just a release of all of these emotions because it's been such a difficult year on so many different levels. And I mean, I just think, with POTS it oscillates all the time and it's so unpredictable and you just have to keep remembering again and again that for every down there's going to be an up. And even if sometimes, you know, the waves are larger, sometimes they could, they come more closely, but for every down there will be an up. So it's, it's really just a day of celebration and the tears are, just so many emotions tangled up in it. And
[00:26:28] Jill Brook: Oh, well, I love you guys. And I just, I'm so proud of you for hanging in to make it this far. I love your attitude that for every down, there's an up. I believe that too. And I like to phrase it as the joy is not lost. It's just delayed. And the more you suffer now, the more you'll be thrilled for any little thing you get later.
So it will come
[00:26:49] 5K/2K Participants: Very true. Very true. Yep.
[00:26:52] Jill Brook: Oh, thank you for
[00:26:53] 5K/2K Participants: try to find the positives in every time, so whether they're big or small, we try to focus on them and build off of those and not the negatives.
[00:27:02] Jill Brook: Before I let you go, would each of you have any interest in saying anything to our community out there who's listening?
[00:27:09] 5K/2K Participants: I feel like that's the, can you tell a joke, you know, where your brain just goes. Go ahead. Do you want me to go? I'll go. Well, as her husband, I will say like. And I know POTS has differing levels. People have different challenges. Sometimes it doesn't interrupt people's lives a whole lot.
Some people it's a lot, you know, Leslie, I feel she's kind of maybe in the middling part of it, but I just know that, yeah, I mean, it's just for all the people with POTS, like, you know, work hard. Don't give up the fight. You know, there's, there's always constantly new breakthroughs.
So just keep the fight up and for the families, you know, just, just keep supporting them as much as you can. That's what we're here for. And then we'll, we'll be able to celebrate. So, and I couldn't do it without an amazing support team. So that's, that's for sure.
[00:28:01] Jill Brook: Yeah, thank you to the amazing supporters out there like you clearly are. Thank you for making today your comeback day. I'm very excited that we get to be this, this day for you.
[00:28:14] 5K/2K Participants: Yes. Excited to be here as always. We mark this on our calendar every year. So,
[00:28:20] Jill Brook: Awesome.
[00:28:22] 5K/2K Participants: you very much. And thank you for all your positive energy. Yes.
[00:28:25] Jill Brook: Oh, thank you. You guys are amazing. Good luck out there. Have fun.
[00:28:30] 5K/2K Participants: Have a good day.
[00:28:31] Jill Brook: Bye bye. Oh my goodness. Okay. Time to wipe some tears away. I feel so grateful that people are willing to share things like that with us.
[00:28:40] 5K/2K Participants: Hello,
[00:28:41] Jill Brook: Hello. Good morning. Who are you and what are you doing here?
[00:28:45] 5K/2K Participants: I'm Jess. I am 23 years old and I'm here to run the 5K. I have POTS so it might be something.
[00:28:54] Jill Brook: Yeah. Talk more about that. What is your POTS like?
[00:28:58] 5K/2K Participants: So I got diagnosed when I was 20. It was three years ago around the end of 2020. I was having some weird dizziness. I had a vertigo attack and then everything kind of went downhill. I was having headaches and I've always had chronic neck and back pain and headaches and I figured it out because somebody, I was working in a summer camp.
and somebody I worked with told me to put Gatorade in my water if it was hot out and I started doing that and I was like wow I feel amazing. And I saw a TikTok that was like hey if you have POTS drink liquid IV electrolytes are awesome and I was like what's that I googled was like oh my god. This is what I have.
And I went to a bunch of doctors and we figured it out from there.
[00:29:39] Jill Brook: That's so funny. I always feel like we should have a bell that we ring when somebody diagnoses themselves before any doctor does. Like, good work being so fast.
[00:29:49] 5K/2K Participants: my cardiologist was like, cool, you figured it out and gave me a fist bump when he diagnosed me.
[00:29:55] Jill Brook: That's great. And so how difficult is it for you to run today?
[00:30:01] 5K/2K Participants: Today, we'll see. So when it was in the beginning, I really couldn't exercise. It was just really hard to even walk around the block, walk from my car to class. I wound up getting a disabled car parking pass. So I was able to use that. That really helped. But since then I started walking a little bit.
I slowly upped it. I started last summer and then this summer I was walking two miles and I thought, Hey, let's try running. Started running. I was able to do that. I've ran a few full 5k distances. So we'll see what happens today. My time is at like 46 minutes, which is just really exciting for me considering I could barely walk around the block a few years ago.
So I'm excited,
[00:30:41] Jill Brook: Oh my
[00:30:42] 5K/2K Participants: there's a POTS category.
[00:30:43] Jill Brook: Yeah. Congratulations. Now you sound like somebody who's tried a lot of different electrolyte drinks. Do you have any recommendations of favorite ones? Best ones?
[00:30:52] 5K/2K Participants: Yeah, I personally don't tolerate any stevia or fake sugar stuff, so that limits my options. So right now I'm using the Normalyte plain flavor. It's good if you put a lot of ice in it, and sometimes I'll top it off with a little bit of coconut water for extra potassium, and that's nice. And I usually drink the Glacier Cherry Gatorade because it doesn't have any dye in it.
So those are what I alternate between.
[00:31:16] Jill Brook: Excellent. And anything else that you do as part of your routine to be able to run?
[00:31:21] 5K/2K Participants: Well, my biggest symptom right now is chronic neck and back pain and headaches here and there. So in the morning I usually start my day with physical therapy exercises for my neck and my upper back that I got a few years ago. That usually keeps me going for a while and I always wear compression.
Like right now I have these awesome compression leggings from Amazon that are squeezing me so much.
[00:31:42] Jill Brook: Excellent.
[00:31:43] 5K/2K Participants: can't live without those. I couldn't run if I didn't have those, for sure.
[00:31:48] Jill Brook: Okay. I just have two more questions. What do you think about when you're running and it's getting hard? And second of all, is there anything you want to say to the POTS community out there?
[00:31:58] 5K/2K Participants: Yeah, so, when it's getting hard, I think back to when I was in high school and I wasn't diagnosed yet, I used to play field hockey, and we would have pre season, and nobody was ever prepared. And we were always, like, fighting for our lives, running all these perimeters, so we'd run, like, little mouse steps, like the tiniest, tiniest mouse steps that were barely running, so when it gets hard, I just...
Dial it back to that. Like, I could walk faster. Anybody could walk faster. But I'm, I'm running. So that's how I keep myself going. I try to play motivational music that I found. I found a few songs that keep me going. Stuff that's upbeat. Yeah.
[00:32:34] Jill Brook: Excellent! So, so wise. And is there anything you'd like to say to the POTS community out there who's listening?
[00:32:41] 5K/2K Participants: I'm not sure. I would say that compression is your best friend. Electrolytes are your best friend. I think we all know that. And that I think slow progress is what you really have to count on, and that, what is that saying, that progress isn't linear? Like, you're gonna go up, you're gonna go down, and it's gonna be okay.
[00:33:01] Jill Brook: Love it. Wise words. Well, thank you so much for talking to us and good luck out there. Hope you have a lot of fun today.
[00:33:07] 5K/2K Participants: you so much!
[00:33:09] Jill Brook: Okay. Bye bye.
[00:33:10] 5K/2K Participants: Bye!
[00:33:11] Jill Brook: Hello. Good morning. Can you tell us a little bit about you and what brings you here today?
[00:33:16] 5K/2K Participants: my name is Kirby, and what brings me here today is I was just diagnosed with POTS a few months ago, like, end of August. So I'm kind of just on this whole like figuring out what POTS is journey and that's how I found your podcast. So
[00:33:32] Jill Brook: Oh, well, goodness. Welcome to the club. And, oh my goodness, can we ask what your POTS is like?
[00:33:41] 5K/2K Participants: yeah my POTS, I get presyncope a lot. I've passed out a handful of times, but all at very inconvenient times. I have a gastroparesis. And that was kind of the symptom that led me on the, Hey, something is wrong here. I have to figure it out. And I get really dizzy. That's like one of the main symptoms.
[00:34:02] Jill Brook: Okay, well, since you are laughing as you mentioned passing out, does that mean that's something that we can ask you about awkward places that you've passed out?
[00:34:11] 5K/2K Participants: Yeah both times were at work. One of them was about 10 years ago. I was working at TJ Maxx at the jewelry counter and I had a customer and we were looking at, like, different pieces of jewelry and I just passed out flat on the floor and then left the store in an ambulance.
[00:34:27] Jill Brook: Oh, no! you okay?
[00:34:31] 5K/2K Participants: yeah, it was okay. I didn't have a concussion or anything. That's what they were worried about. The second time I was a preschool teacher, this one is a little bit more sad, but I was a preschool teacher and I passed out in my classroom and so I talked to like the principal slash director and I had to Leave my position just based on some health things that were going on. So that was, that was really sad.
[00:34:55] Jill Brook: Oh, so it's already kind of affected your career, it sounds like.
[00:34:59] 5K/2K Participants: Yeah.
[00:35:00] Jill Brook: Oh. Well, now that you know what it is, have you found anything that helps?
[00:35:05] 5K/2K Participants: Salted caramel. I eat a lot of salted caramel even though it's not really healthy and it's not supposed to like, you know, be my go to. But otherwise I have medical grade compression stockings and I found that those really, really help. I'm on three different types of medication, like an SSRI, a beta blocker, and a steroid, florenepinepropanol, I know that those two are, you know, definitely first hand, like, used in the POTS community, so I'm on those two What else helps?
Drinking lots of water. Normalyte. I drink a lot of Normalyte. The pure kind. Ha ha ha!
[00:35:46] Jill Brook: We didn't pay you to say that, but they are out
[00:35:47] 5K/2K Participants: sponsor today!
Yeah I saw that they were sponsoring and I was like, Oh my gosh, that's awesome, because Liquid IV is great, but I see Liquid IV like everywhere and I don't really see people talking about Normalyte. And the... The pure kind, it's like just drinking a glass of water. It's wild.
[00:36:04] Jill Brook: excellent. So how challenging is it going to be for you to get out there and do the run or the walk and what are you going to be thinking about as you do it?
[00:36:13] 5K/2K Participants: It's going to be very challenging. I originally signed up for the 5k, but I'm having a bit of a flare day today. So, I am going to try to walk the 2k, but I'm not going to be... Like, hard on myself if I don't get through the whole thing.
[00:36:27] Jill Brook: Yeah, for sure. So do you have somebody there to kind of come check on you if you don't make it?
[00:36:33] 5K/2K Participants: my absolute best friend she's here with me. Her name is Nina, and she is actually a doctor. She's a resident at Ohio State right now.
[00:36:41] Jill Brook: Oh, hooray for kind friends to do that. Yay. Okay. And what are you going to be thinking about as you're out there and it starts to get tough?
[00:36:50] 5K/2K Participants: I'm gonna, like, be thinking, just keep going. Like, if you need this rest, you know, definitely rest. Listen to your body. And, you know, it's for a good cause. It's for research for us. So,
[00:37:01] Jill Brook: What a beautiful attitude. Well, I know that everybody listening is wishing you all the best. Do you have anything you want to say to our community?
[00:37:09] 5K/2K Participants: I think a really good thing to say is like, even in your hardest, like times and your hardest flares, like it's not your fault. I hear a lot of people who are like, you know, who it's great and they're recovered from POTS and they're like, you know, I did it because I was able to do this and this and this and this and this and this and this.
And there are a lot of us who don't have like that special thing that we found that just has fixed everything. If you haven't, it's not your fault. you're trying your best. You're still out there and fighting it, and you're still a warrior.
[00:37:41] Jill Brook: Absolutely. Absolutely. Some of us are still looking. Yeah. Okay. Well, thank you so much for talking with us. Thank you for coming out today and we hope that you have a good time out there. Good luck.
[00:37:54] 5K/2K Participants: you.
[00:37:55] Jill Brook: Okay. Bye bye.
[00:37:56] 5K/2K Participants: Hi,
[00:37:57] Jill Brook: Hello. Good morning. How are you? Who are you?
[00:38:02] 5K/2K Participants: my name's Megan.
[00:38:04] Jill Brook: And tell us a little bit about yourself. Are you a patient, a supporter? Are you walking, jogging?
[00:38:10] 5K/2K Participants: Patients. I was diagnosed with POTS in 2016. It took a while to get diagnosed though.
[00:38:16] Jill Brook: How long do you think you had it before you got diagnosed?
[00:38:19] 5K/2K Participants: Well, I was saying for a while, a couple years, but when I think back to my childhood, I did pass out a lot, but doctors just thought it was because of my other chronic illnesses. So know, I'm curious as to know For sure, which one did it?
[00:38:38] Jill Brook: yeah. Oh my goodness. You know, this has come up a few times this morning, the other chronic illnesses that go with POTS. Do you want to tell us a little bit about what your flavor of POTS is? I call it flavor because it's almost like we all have ice cream, but we have slightly different flavors.
[00:38:55] 5K/2K Participants: Do you mean like what other illnesses I have with it?
[00:38:58] Jill Brook: It can be that or like, what symptoms, you know, since POTS has so many different symptoms, some of us have it bad in one way and others of us have it bad in a different way. And I'm just curious what yours is like.
[00:39:10] 5K/2K Participants: well, I haven't passed out in a long time, but I get to the point of passing out. I call it this really funky feeling. And then I will go and lay down on the floor because I know it's coming. I can feel my blood pressure going, my heart rate. And so the floor is my safety zone.
My heart rate is always high. Every time I have a medical appointment, they're freaking out about my heart rate. And I just, I don't know, I don't feel safe. I just feel unsteady and just funky feeling. I don't feel safe.
[00:39:45] Jill Brook: Oh, that sounds terrible. Because you always feel like you could pass out at any moment. Oh, so I saw that you bring somebody so that they can keep an eye on you?
[00:39:58] 5K/2K Participants: It's my husband. He's just very supportive of My health conditions and likes to be with me on different appointments or different events like this or other events we go to and
[00:40:10] Jill Brook: Yay! Shout out to him and other great partners. Now, is there any comic relief to be had in various floors that you have had to use?
[00:40:20] 5K/2K Participants: what do you mean?
[00:40:22] Jill Brook: Have you ever had to lay down on a floor in a weird place or a gross place or anything like that?
[00:40:31] 5K/2K Participants: The bathroom.
[00:40:33] Jill Brook: Hmm?
[00:40:34] 5K/2K Participants: The bathroom's probably been my main laying on the floor area. Did I do it in a store once? Yeah, we were in a shoe store. A shoe store, I forgot, oh my goodness, in a shoe store at the mall, and then the squad came.
[00:40:49] Jill Brook: Oh, what were they thinking?
[00:40:51] 5K/2K Participants: Well, the store lady was concerned. That was before diagnosis. That was before diagnosis, even. And, once I got taken to the hospital, they were really concerned and they wanted me to see a blood doctor and everything.
[00:41:06] Jill Brook: You know, it's funny because you're reminding me that It got to be, I don't go to the mall very much anymore, but the last few times I did, I found myself feeling like I really needed to lay down. And so I would head for the nicest department store, like a Nordstrom's, grab a shirt, any old shirt off of any old rack and pretend like I was going to go try it on so that I could then go into a trying room and just go lay on the floor.
But they always have those signs saying that, you know, They're monitored. And I always thought, okay, somebody is out there monitoring, wondering what I'm doing, but it's nice to have this place. And the, you know, floor is not too terribly dirty because those bathroom floors can get pretty dirty. Huh? I always thought that's like proof that no, somebody's not faking it.
Right. Nobody would go lay on one of those bathroom floors. Oh my goodness. Okay. So what are you going to be thinking about out there on the race course today when things get tough?
[00:42:00] 5K/2K Participants: Well, I know I'm not going to be able to do much cause I'm recovering from abdominal surgeries. But what I'm going to be thinking about is this. I'm just excited to be around other people like me. I have no one in my area where I live and so I'm just thoroughly excited to be a part of this.
[00:42:19] Jill Brook: Oh, that's exciting. Were you hanging out in the room with the other POTSies?
[00:42:24] 5K/2K Participants: Yep.
[00:42:25] Jill Brook: What was that like?
[00:42:26] 5K/2K Participants: It was... It was... Very nice and emotional and just like reassuring to physically see other people like you.
[00:42:35] Jill Brook: Yeah. Well, before you head out there to get started, is there anything that you would like to say to the POTS community out there?
[00:42:44] 5K/2K Participants: Just keep an eye on your symptoms, and if something doesn't feel right, you know, get a hold of your doctor. The patient knows the most about what's going on and definitely get things figured out and checked out.
[00:43:01] Jill Brook: Good, good advice. Okay. Well, thank you so much. We hope you have a good time out there. I know everybody's sending you all the best. Okay. Bye bye.
[00:43:10] 5K/2K Participants: Thank you. So it sounds like we're done. We're moving to try to get everybody's picture and all of that. Thank you so much for getting up so early to do it.
[00:43:19] Jill Brook: I think it was actually really good. We had tears. We had laughter. We had everything.
[00:43:23] 5K/2K Participants: That's wonderful. Thank you so much, Jill.
[00:43:25] Jill Brook: Of course. Okay. Good luck.
Well, okay, listeners, all of the participants are headed out to the race course. They're getting ready to start. So that's it for today. Time for me to go out and do my 5k. We'll be back next week, but until then, thank you for listening. Remember you're not alone and please join us again soon.
