Episode Transcript
[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 a POTS Diaries update with Jolie. Jolie was in episode 160 and she has some exciting news that she is sharing with us today. So thank you for being here today, Jolie.
Jolie Mayes: Hey, I'm so happy to be back. It's awesome. But I can't wait to share my news with you guys and just give you guys a little bit of a life update. So much has happened and I'm so excited.
Jill Brook: So if we can just make everybody have suspense for one moment, I think we should start by just reminding people who you are. And so, do you want to just kind of say a quick few words so that people remember?
Jolie Mayes: Yes, so I live in Chattanooga, Tennessee. I think when we talked, I was still freshly diagnosed, so now we are past a year of my formal POTS diagnosis, and I have chosen [00:01:00] to take more of a holistic approach, and it has been really helpful. It has been so amazing and it's been really successful for me and I just hope to be able to continue to shed a light on to POTS syndrome because it is so under researched and under funded.
And I think that I have the ability to help so many people and I've actually been able to help four other women get diagnosed with POTS since I've been diagnosed, so that's been really, really amazing.
Jill Brook: Oh, fantastic. And when you say that you've taken a holistic approach, what does that mean to you?
Jolie Mayes: Yeah, so I am off all medicine. I have really taken more of a using LMNT. I know I raved about them the last time, but they are my tried and true LMNT. If you haven't tried it, go get it. Sodium tablets are [00:02:00] amazing and a little bit of warm water. I've also found every so often going to get IVs. If you're able, it's really good to just help retain your hydration.
And this last thing I've just recently started, it's gonna sound a little crazy, but, I have this little tea that I make, it's apple cider vinegar, hot water, honey, and a little bit of ginger. People with POTS have a, their immune system tends to be compromised, and apple cider vinegar is really good at helping boost your immune system.
So during flu season, COVID season, try it, it's gonna change your life.
Jill Brook: Okay. And I seem to recall that you told us that you are the child of a physician, right? And so it's sort of interesting in light of that, that you've kind of chosen the holistic route, because I'm guessing you had access to the other route if you wanted it, but this has worked better [00:03:00] for you?
Jolie Mayes: It's worked so much better for me and I did the medicine route and not to say that it's not effective because I think it's really effective. I just had a really bad reaction to the medicine and I chose to try a different route, and if it didn't work, to go back to medicine, but so far, it's been really good, and I was actually able to get into the POTS clinic at Vanderbilt.
The wait list was like a year, but I was able to get in, and they provided some really great insight and also just a lot of confirmation that how I feel is more than valid, but there is also light at the end of the tunnel and just confirmed that I was taking appropriate steps and that I could be on medicine, but I don't necessarily have to be at this time.
So that was also really [00:04:00] good, that was really good to hear.
Jill Brook: Very cool. So, POTS has not ruled your life since we talked to you. Wanna talk to us about what else you've been up to?
Jolie Mayes: Yes, so I, oh, it's so exciting and this is really outside of my comfort zone because I, since this diagnosis, I have really taken a step back from all the things that really used to fill my cup and used to excite me just trying to get myself healthier again, and then also giving myself grace and time to learn how to live with POTS I think is super important, but I am so excited to announce that I am now Miss Chattanooga, USA woohoo, and will be competing in Miss Tennessee, USA
Jill Brook: So, congratulations! That is so huge and so wonderful, and I know that you had to work harder than everyone else did just to stand up and blow dry your hair. But, for [00:05:00] starters, I have so many questions, but for those of us who are not that tuned in, can you talk about, like, what is the pageant world, like, can you give us an overview of what is this?
What part of it have you done? What part of it is still coming up? And like, what does it involve?
Jolie Mayes: Absolutely, so I'm also very new to the pageant world. It's not something that I grew up doing. It's not something that I trained my entire life for. I'm really doing this as, I don't know if homage is the right word, but to really show life that I am I am a capable person and I can do challenging things and I can do difficult things and I also feel so empowered by having POTS and being able to do this and I would really love to use this platform to be able to bring awareness to POTS because, like I mentioned, it's so underfunded and so under researched, so that's really the whole goal in doing [00:06:00] this.
Jill Brook: That's awesome. Thank you so much.
Jolie Mayes: Yes, I'm excited. I have a lot of really great things in the works we're going to be doing a lot of fundraisers to donate the money to fund for research for POTS. So there's a lot of great things coming and I'm really excited to continue to talk about it because the more and more I talk to people about it, the more and more other people have these symptoms and are able to get properly diagnosed.
So just talking about it changes people's lives and that's so amazing. But back to your original question. The pageant world's crazy, so I have learned that it is 50 million times harder than I ever thought. It has been such an educational experience getting to meet with some amazing women. My coach was the former Mrs. Tennessee and she's really shown me the ropes and what it all takes to be in this industry because it is not easy. I feel like I've really learned how to speak more eloquently and getting [00:07:00] to talk to so many different types of people has been such an amazing experience, but I will be competing in Miss Tennessee in March, which is going to be super exciting, so stay tuned for that.
But I am right now just doing a lot of practicing. I have my I have a photo shoot tomorrow in Nashville. I'll have a bunch of appearances, I'm currently trying to get a lot of partnerships with people to sell some water bottles, to donate that money to POTS research, so we're working on that, and then obviously doing something like this to really just come back and be like, we can do it guys, and I don't think that there's really, there's not a whole lot of people out there who are out there talking about POTS who have a big platform.
So that's really my goal is to get it out there, get the word out there, and share this with everyone because it's a lot more common than people realize.
Jill Brook: Yes. Yes. Oh, that's amazing. So [00:08:00] what did you have to do to become Miss Chattanooga?
Jolie Mayes: So for the USA Miss Universe organization, to qualify for the state pageant, you had to go through an interview process. So, once you go through the interview process, you meet with the directors of the pageant, they review your resume, review specific qualifications, and determine if you're a good fit. It's a lot of like, what's your education background?
Are you, what is your, what do you do philanthropy wise, all that stuff is really important and it's really crucial. So a lot of really good conversations and then I got the call that I was selected to compete in Miss Tennessee. So then I got to, I was, I received the title as Miss Chattanooga, USA. So that was super exciting.
I've just been spending several months and we'll be practicing and training. So that's super exciting. Actually, when this [00:09:00] airs, people will know, but no one knows right now. I haven't told anybody yet, so this is like a really big surprise.
Jill Brook: Oh my gosh! Okay, so when the Miss Tennessee competition starts, what will you be doing for that? What does that entail?
Jolie Mayes: Yes, so it is a three day event. You have, obviously, you have orientation, and then you go into an interview round with the selected judges. And those conversations can look very different, but it's what sets you apart, why do you want to be Miss Tennessee. To have the opportunity to discuss your POT form and the things that you're passionate about.
And of course, my platform is going to be bringing awareness to POTS and invisible illnesses. I'm super excited. And then, when it comes to the actual show the pageant, you have you're judged on evening gown, you're judged on swimsuit, and then you're judged if you make top [00:10:00] 5 on an on stage interview question.
So, it's very nerve wracking, it's something I've never done before, but I'm hoping that all of this training that I'm going through is going to be beneficial to me because this is just such an amazing opportunity and I'm truly just so grateful and I'm still learning about this world every single day.
But it's been fun. It's different, but it's really, really fun.
Jill Brook: And I'm guessing it's also making you learn more about POTS because now you have to teach it to other people.
Jolie Mayes: Yes, yes, I am. And I actually I had to go to Nashville the other week and on my car ride home, I was just listening to your podcast and listening to just some doctors talk and share their insights on various aspects of POTS. And it honestly is just so informative and I swear that I learned something new every single day, but it's also been really fun, you know, just to [00:11:00] get to know, get to learn more about what I have and how it's different for everyone else. It's been it's really interesting. It is.
Jill Brook: Well then that's going to help so many people. So if the estimate before COVID was that about 1 percent of teenagers has POTS, and now it's even higher, and who knows how much higher, and then throw in the other invisible illness, I imagine your platform actually is you know, geared to help a ton of people.
Have you been approached by people? I guess nobody knows about this yet.
Jolie Mayes: No one knows about this yet but I have had girls that, because I'm very open about it I talk about it on my social media, and I've had had this random girl reach out to me one day. I've never met her. We didn't follow each other and she just said, I've seen where you were diagnosed with POTS, like, can you tell me more, because I think I have what you have.
And we just kind of, I walked through my symptoms, and I was like, I don't know where you live, [00:12:00] but I have some doctors that I can refer you to that really helped me. And then a couple months later, she reached back out and was like, thank you so much. I was able to get diagnosed with POTS. Like, this it's changed my life and I'm just so grateful and that is such a rewarding feeling of just knowing that I was able to help someone else because on average, you know, people are waiting 10 years to get a diagnosis.
So it's so amazing and it's truly empowering when I'm able to help someone streamline that process and get the diagnosis that, that they need to learn to live with this because it's not the most fun every day.
Jill Brook: Yeah, for sure. Now, I just have to ask a practical question. A pageant sounds like it involves a lot of standing around. And maybe standing around in the heat, if it's Tennessee. And maybe standing around in high heels, which I think is harder because you can't like [00:13:00] flex your calf muscles to try to help. Are you nervous at all about how much standing around there is?
Jolie Mayes: So I have, I've started practicing all walk around. I have these like not even joking seven inch heels, and I will walk around my house and I will stand in them. So I'm forcing myself to get used to it. And then doing a lot of prep on the front end of, like I mentioned, doing IVs. Getting as much water intake as I can to help my body get used to it so when the come, when the time comes, I will feel prepared.
So having to do some work that most people wouldn't have to do, and they're like, you don't have to practice standing. I'm like, I do. I'm just going to stand. I'm going to stand in my kitchen, right now, with these heels, but I think it'll be beneficial. I think, you know, continuing to learn and educate myself on POTS is going to help me to prepare myself in a [00:14:00] way to know the proper steps that I need to take, the things that I need to do to ensure that I remain healthy and happy and can stand there for 10 hours. Need be.
Jill Brook: Yeah. Oh man. I hope it's not literally 10.
Jolie Mayes: I know, yeah, neither do I, but we'll figure it out. Yeah, so.
Jill Brook: You had mentioned about how this can expand your reach and how already you've been able to like work on partnerships because of this. Can you talk more about that, like, what kinds of things can people do with this on their resume, like what, what kind of partnerships are examples of what happens?
Jolie Mayes: I have actually started a partnership with a med spa here in Chattanooga, and what we're doing is, we haven't launched it yet because I haven't announced, but when we do we are going to be doing a whole IV series centered around POTS and the benefits of it, [00:15:00] because it's also like people typically wouldn't think about that.
And in bigger cities, you know, we have about six different IV places and that could be so beneficial to someone if they go once a month, once every two months, just to get an IV drip in that can really help hydrate them and rejuvenate them. So that's one of the big partnerships that I'm working on right now.
I'm also, so, in connection with a water bottle company that I'm hopefully going to be working with to sell these water bottles with LMNT and them and use them as the fundraiser to help fund research for POTS syndrome. So fingers crossed. And then it also just helps get me on platforms, like I'm going to be on the news.
I'm going to be able to share this with such a wider audience. And if I have the opportunity to be at Miss [00:16:00] Tennessee, that's just going to open up so many doors to be able to get in front of so many influential people to help bring awareness to this. So that would just be an absolute dream.
Jill Brook: Oh my gosh. And we thank you for that because that is just absolutely huge. Okay. So what is the best part and the worst part about participating in this?
Jolie Mayes: So the best part so far has really been, I've learned a lot about myself. I, there's so many things I didn't know about myself. I'm doing a lot of self reflection and growth, and my coach is amazing in that respect of, it is like you're in a pressure cooker. So there's a lot of pressure. So I'd say maybe that's the worst part.
But then in turn learning to deal with that pressure, it really does help shape you and help develop you as a person professionally and personally, which is [00:17:00] a really big thing. So that has been such a really cool experience and just seeing who I am now from where I was two months ago, I have just changed drastically so much and I would have never anticipated that.
So I think that's one of the beautiful things that's come out of pageantry that I wouldn't have expected is that you do have to do a lot of self development and a lot of work on yourself because you are putting yourself in such a vulnerable position, so you better get right with yourself, and that's what I'm trying to do.
It's like, we're working through everything, and it's, it's honestly been so amazing and so freeing at the same time. So I'm really excited.
Jill Brook: Oh, that's so interesting. And that's really, really neat to hear. And then I suppose I don't know, I have no idea what the competition was like at Miss Tennessee. I imagine it's intense and very fierce.
But you seem like you [00:18:00] have really good chances. And so then I guess if that goes well, then you get really, really busy and put into a much bigger, hotter pressure cooker to do it again.
Jolie Mayes: Yes, I always like to say like I am ready for a challenge and I think I'm really doing this not only to like, I'm just proving to myself that I I can do this in that I have the skill set just like every single other person and just because I have this disability does not make me less than and does not make me any less capable.
If anything I feel like I'm more than capable to do it because I feel like this has become such an empowering thing and I've chosen to accept it and do something good with it. That, in turn, is funding research and let's, let's figure out what's going on, guys, and we're going to help [00:19:00] everyone.
We're going to get everyone happy and healthy.
Jill Brook: Yay! Hooray! Well, thank you so much. Thanks for your generosity for including us in this. And for choosing to, to make your experiences mean something for all of us in this community. That's so huge! Is there any final words or message you have for everybody out there on Team POTS?
Jolie Mayes: I would just say that you can do absolutely anything you set your mind to. And I just want to be that example for people. And that reminder that just because you have POTS doesn't limit you. You can do anything that you set your mind to. And to give yourself grace and to be proud of yourself because you have come so far than where you were a month ago, two months ago, a year ago.
Pat yourself on the back and I'm proud of you.
Jill Brook: Beautiful. And you mentioned some social media. If people wanted to follow you, where can they find you?
Jolie Mayes: I am [00:20:00] on Instagram and TikTok. My username is just JolieMayes, J O L I E M A Y E S. Follow me, I'll follow you, and we're going to be talking a lot about POTS, so come on over and we're going to have a party, sitting down of course.
Jill Brook: Beautiful. Well, thank you so much, Jolie, and best of luck, and we will have fun following you, and if anything exciting happens, we hope that you'll come back and report it again here.
Jolie Mayes: Oh absolutely, you guys will be the first to know.
Jill Brook: Aw, yay! Awesome! Alright, well, hey listeners, that's all for today, but we hope you enjoyed this 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.
