Episode Transcript
[00:00:00]
Jill Brook: Hello, fellow POTS patients, and magnificent people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode for the POTS Diaries with Megan. Megan, thank you for joining us today.
Megan: Thank you, Jill. Feeling honored to be here.
Jill Brook: Well, we're so excited to get to know you. Can you give us the sort of quick get to know Megan pitch?
Megan: Yes, of course. My name is Megan and I am originally born in New York and I moved during my younger years to Georgia, and I grew up in Georgia, had my teaching experience in Georgia. Then after that, I moved to New York for my master's degree to obtain a literacy degree from Columbia, and it was in three approaches to literacy instruction.
And I really have a desire to just really see strong literacy work happen in Georgia. And so after my master's, I moved back to Georgia and I've been working in a very large district with about 83 elementary schools.
Jill Brook: [00:01:00] Oh wow. And so you help pass on these three approaches to literacy to make sure that like all the kids can read or tell us a little more about that. How does it work?
Megan: Yes. So part of my job includes being at the district office, and then part of my job includes going to the schools. And so when I, I'm predominantly at the district office, a lot of times we're planning professional learning, so this could include the audiences of administrators, coaches, teachers. And so when we're doing that, we're really just digging in.
And right now there's actually been a lot of science of reading research that's been out there for decades, but it's coming forward along with structured literacy. And so we have a big push in our district right now for structured literacy instruction. So we've been having professional learnings once a month on that.
And you know, of course we also, we have a high quality instructional material as our curriculum, so we go out to schools and we support leaders, coaches, teachers with implementing the curriculum for literacy.
Jill Brook: [00:02:00] Wow. Very cool. And I think from our correspondence in the past that maybe POTS put some of this great work at risk for a time. So let's, we'll get to that in a minute. But I guess for starters tell us a little bit more about you. Like how would your friends or family describe your personality?
Megan: They would describe me as positive, passionate, brave, you know, willing, willing to be friendly with anyone. I, I talk a lot. I'm more of an extrovert, but, you know, just, just really caring for others and always, I love learning. I have a love of learning and so I'm always wanting to learn more and wanting to learn more for students, teachers, leaders.
So anything you know that I can do to learn more is just something that interests me.
Jill Brook: Oh, that's fantastic. So can you tell us when did POTS enter your [00:03:00] life? And for now, what I'm mostly interested in is like what did your life look like at that time when POTS entered.
Megan: Yes, of course. So when I first began to notice a symptom that ended up being POTS is, it was after I had mono, so I had mono for a couple of months. It was actually about two years ago, actually exactly in April. And so about two years ago, I, I was having mono. It took the doctors a while to find out that that's what I had.
You know, they were testing different things and, and once I had mono, it was kind of jumping all over my body. And then after that I had about a week of calm and I returned back to work from being off for the summer. And then that's when I got COVID. And so I think the combination of the two is really when I started noticing at first a lot of vestibular symptoms.
But then I also noticed a rapid heartbeat. And anytime I was asking about that you [00:04:00] know, ENTs, I visited several ENTs, they were not able to explain that portion to me. And, you know, I was, I was doing the vestibular rehab therapy and all of that and having, you know, VNG assessment that showed weakness in my inner ear.
But it's still just, there was something that was not being addressed, and it was that rapid heartbeat from sitting to standing, and it would jump 30 beats or more anytime I would go from sitting to standing. And having trouble walking, you know, I, I went to about probably three ENTs, three neuro ENTs,
then I went to about three neurologists, because then they were thinking it might've been neuro. And one of the neurologists was actually like, you know, I, I think you need to really look into dysautonomia and I'm gonna have you put in a request, a referral to see Dr. Cutchins at Emory. And so then I was on a wait list for Dr.
Cutchins. And you know, it was very, it was very great that, and I feel very grateful that I ended up [00:05:00] having her. And so, you know, when I got off the wait list and I was able to go, that was last February. And so, I've had Dr. Cutchins for a little bit over a year. And just to kind of set the scene for what it was like when I first showed up.
At that time, I was missing work every week. I was missing two to three times a week. Whenever it would get to the afternoon, I was either, whenever I would go to stand, I was either seeing black or seeing a pinwheel like I was going to pass out. You know, my family members were having to pick me up because you know, it was just, it wasn't that great at that time.
But, when I explained it to her, it was interesting to me because I saw probably about 22 plus doctors in the span of a year, and immediately when she did tests on me, she just found stuff right away. You know, like it was like all, all of my tests were like normal, normal, normal. And then when I came to her to it, it showed, you know, just [00:06:00] some of the things in my blood work and items like that.
And, you know, she knew almost instantly. It was interesting, you know, she just had me, you know, some, some of the examinations she does in her office, I think it's at the poor man's tilt table and also just some of the EDS hypermobility tests that she does as well. And she noticed that. And you know, she began developing a plan right away.
It was interesting. I had listened to, shortly before coming, I had listened to her POTScast and just some of the strategies offered in her article. And so it was great to just see how she works with that and, you know, really just learning more about those strategies to use.
Jill Brook: Yeah, and in some ways it's almost like you sort of won the doctor lottery of all the...
Megan: Yes. Yes. She is truly remarkable. Yes, yes.
Jill Brook: Wow. Okay, so you went from missing a lot of work, needing to be picked up by your family members, seeing pinwheels and things when you would try to stand up. How'd it go? Did it make a [00:07:00] big difference? What helped? What didn't help?
Megan: Yes. So the first thing that she had me do was actually get medical grade compression. Before that, I, I was using maybe some other compressions that the neurologist recommended, but what I ended up discovering is that I needed it from the actual hospital. That was the only way, you know, I went through a lot of different types and then Medi or Mediven, that they make a custom fit one.
And so I ended up getting that one and that one really helped me along with, she had me try the electrolyte supplementation. And so I, I tried a different, a lot of different brands and I was reacting a lot to a lot of them. But then I ended up discovering the one that she recommended of Nuun, and that one has been a game changer for me.
I mean, I probably have four to six of those a day along with the compression stockings. And then since then I've been also going through different antihistamines. And I've actually went through quite a bit of [00:08:00] those and when I was writing you guys, when I say that this woman is just relentless, like she is going to get in there and really be alongside of you and fight for you, you know, she, she knows that you are fighting through this and she's gonna look. If one approach doesn't work, she's gonna try another and try another and try another.
What I really appreciated is that she was willing to truly listen to your symptoms. When she's taking notes, she's listening intently. She, she doesn't want any stone to be unturned. And so when you're telling these symptoms that appear odd, because sometimes, you know, the MCAS goes along with the POTS and you know, she understands it.
She understands that beforehand you might've had some allergens and now you know a lot more coming out, you're not understanding why it's not showing up on an allergy test. Items like that. And that's how she's really able to tailor it and listening to it. Really just learning a lot from her. I feel so grateful because she, she just educated me a lot on, you know, what are some of these inactive ingredients [00:09:00] that are included in medicines and supplementation and, you know, these are ones that you might wanna avoid.
You know, you can make a spreadsheet. Turn it into a process of elimination, and then from there, find out which, which inactive ingredients are causing this. And then from there, that's where you can really zero in and find one. And so most recently I've been actually utilizing one of, one of the antihistamines called ketotifin.
And so she ended up giving me a recommendation of compounding at the compounding pharmacy. And that has been great for me because normally I was having a lot of side effects. And so, yes.
Jill Brook: Wow. That's fantastic. So, so do you think that's probably why you reacted to a lot of the electrolytes until you found Nuun?
Megan: Yes, I do, because a lot of times it was interesting too, sometimes things that contained citrus were bothering me. And then sometimes also some of the other items there was, there was three ingredients that we've noticed so far. Micro crystalline cellulose, [00:10:00] magnesium stearate, and lactose monohydrate.
Those three were just coming up as trends in all the medicines. And like sometimes I would get, you know, maybe a hives or a rash, but sometimes it would be like a choking cough. Certain medicines have caused maybe for me to have to go on the nebulizer. Not a lot of them, but three or four of 'em. And so just because of that, I, it was, something was weird about it.
And so what I noticed also about the, the current one, ketotifen is that, you know, it's meant for that. And so that just kind of problem solving with that. And so just grateful for that. Yes. And so just appreciated that approach because it was just really interesting to see across all of the items that we tried along with, you know, I mentioned beforehand, I, I had about,
you know, maybe 20 plus doctors beforehand, you know, before getting to her. And I just felt so grateful. It really was like winning the lottery, having her as my doctor because she understands. You know, she understands what it is that her patients are dealing with, and [00:11:00] she really just looks to find, you know, what are some of those root causes through process of elimination.
Jill Brook: Well, yeah, I was gonna say, so it sounds like you saw 20 doctors, got no new diagnoses, and then you saw Dr. Cutchins and you got three, you've got the trifecta now. The Ehlers Danlos, the POTS, and the Mast Cell Activation Syndrome.
Megan: Yes, yes. It, it was interesting beforehand, you know, sometimes maybe people would, people were, people were wondering if it might have been something with vestibular symptoms only. But then, like I said to you, even through I did a lot of vestibular therapy. I did it once in Atlanta, I did it two times, you know, where I live.
And, you know, both of, all of those times, it was still the, the unanswered question was this heartbeat. You know, the racing heart when I'm standing, you know, the heartbeat and the heart rate jumping up. They, they couldn't figure that out. And then also just, you know, I always am kind of having like a, you know, the rash on my face and items like that.
And that was just something that they couldn't really explain to me either. [00:12:00] And, you know, sometimes, maybe, maybe some were thinking, oh, you know, this might be anxiety, or it might be, you know, something just still with vestibular. And I, I would say that before I started implementing some of those strategies, it did not improve.
And like we were talking about earlier, it was just, it was a blackout. Like I remember, you know, I was telling you one of the things I'm really passionate about is this professional learning, right? And having strong literacy, professional learning for the leaders and coaches in our district so that they can, when they're working with the teachers, it can really just, you know, improve literacy instruction and improve outcomes for students.
And so, you know, to go from you wanting to be there so bad on a presentation day and you know, you helped plan it and everything, and, and you can't even turn your head left or right. Or you know, you go to stand and you're blacking out or seeing pinwheels and you have to go home to now, you know, I'm able to be there, right.
I'm able to be there. Do I still need, [00:13:00] you know, assistance with standing for a long, long time? Yeah, I do. But just being able to be there and not have a constant pinwheel or a blackout or feeling sick to my stomach or items like that. I mean, that to me is a total win. And it's really, I've only had Dr.
Cutchins for a year, but she was able to accomplish all of that working alongside of me in one year. And, you know, in comparison the first year, you know, I didn't really have any improvement. And instead I felt like I was going backwards before her.
Jill Brook: So, do you have any symptoms that have not yet been helped by any of these things?
Megan: I think that still with, you know, the POTS, I still do have dizziness and I still do have the heart rate increase, but I, but I will say that some of the strategies there have helped with that. I think for me, my particular situation really involves just medicine sensitivity in addition to the food sensitivities that I [00:14:00] have.
And so because of that, it has made it, you know, a little complex. Like in the future we would wanna add, you know, more than the ketotifen, but right now I kind of just have to do it in a stepwise manner. So those, those are some. There's still something with light sensitivity. I just still have that and recently she was recommending to me that maybe I can try something called Heliocare.
So that's gonna be one of the next steps that I do, is just using Heliocare to help with some of the light sensitivity, just because the light sensitivity was playing into it sometimes as well. It's kinda weird. It doesn't happen 24 7. There are some times when it's worse than others, but yeah.
Jill Brook: Can I just ask, what is Heliocare for those of us who have not heard of it?
Megan: Yeah, sure. It is actually, what I've learned about it so far from looking online and just what she was sharing with me is that it's a supplement that can help protect UVA/UVB rays. And [00:15:00] so, you know, maybe something with, with this light sensitivity, in my work, we have LED lights and fluorescent lights, and it's supposed to help kind of hone that in.
They also make, you know, I think it was one of her nurse practitioners, Jenna, was sharing with me, they make a sunscreen of it as well. So I could try both of those and see if that's kind of like the external rash that I'm sometimes getting on my face from the sun. And then in addition to the internal, with the Heliocare, and it's right on Amazon actually.
So that's kind of nice and convenient.
Jill Brook: Oh, that's interesting. You know, I found that, that I had to change the light bulbs in my house because the LED light bulbs were just hurting my eyes too much. And so I found a company that still sold the old fashioned incandescent ones. And it's weird 'cause they're hard to find now, but it it helped a lot.
And so it's, it's interesting, you know, like there could be all, that's the tough thing about MCAS. Is it the UVA? The UVB? Is it [00:16:00] the fluorescent lights? Is it the LED lights? Who knows? It could be any of them. So, I guess you're, you're working your way to figure all that stuff out.
Megan: Yes, yes, certainly. And you know, she also, Dr. Cutchins also uncovered that, you know, maybe something with venous compression going on too. You know, I might have a little bit of that going on. And so I just really appreciate her thoroughness because you know, even though predominantly she's working with POTS patients, cardiology, you know, she still took the time to dig into that and really just uncover that as well.
So that is something I'm also very grateful about because sometimes I was, I was still having, you know, when I'm telling you about like the distance walking sometimes is a challenge, and it could be, you know, if the light sensitivity is going on, but it could also just be, you know, some of this, she's explained to me like you can get chronic fatigue sometimes after having two viruses like that together.
But then also it's something still with the venous [00:17:00] compression.
Jill Brook: Oh, that's great. And you know what makes me happy is that it sounds like Dr. Cutchins helped you get back to what you're passionate about and that's helping you do more to help all of the teachers and everyone get better educated about literacy, and that's helping them help the students, and it has this nice domino effect of good things.
Megan: Yes, yes. I'm extremely grateful for that because, you know what I, what I appreciate is that she, you know, she is a very driven lady and she's very passionate and she shares about her goals and how she does want to continue to help and serve more and more patients who have POTS, who have dysautonomia, things like that, the vascular issues and vascular compression.
And you know, she listens to her patients too and understands their goals. And you know, I know that she knows that I'm very passionate about, you know, literacy and professional learning. And she understood the sense of urgency that I had when I shared, you know, this is something I'm passionate about.
Once a month [00:18:00] I love getting to interact and facilitate and collaborate with administrators, coaches and teachers. And this, this POTS and dysautonomia that I'm getting and the MCAS, it's getting in the way. You know, it's getting in the way of me doing that. And she really heard that and she really just. Supported that goal that I have to continue to do that.
And so, yes, I'm very grateful for her for that. And you know, she just, she, she believes in her patients. She takes them for, you know, at when you're sharing something with her, she takes your word for it. And she then problem solves, you know, and if that means, you know, she's doing it right away, she's doing it right then and there in the office.
You know, she's also, you know, sometimes she'll send follow ups via her nurses in the portal too. So that's always been helpful too.
Jill Brook: So do you feel like this experience has changed you at all as a person?
Megan: Yes, because it's interesting, you know, I think in life we take for granted so much, right? Like, you know, you're just, you, I, I always have [00:19:00] loved getting to do that, getting to do the professional learning and interacting with literacy and you know, it, then there comes a time where you're standing there and you're like, you know what,
I can't move my head left or right. I can't stand up or I'm going to black out or have a pinwheel. And what it has taught me is that you don't ever need to be doing something alone. That if you, if you have goals, they should be shared goals with a team. And, you know, we have an incredible literacy team and they have worked together.
We've pulled it off together to continue. And, you know, it doesn't always mean that you have to do the same part every time, right? Like, you might present this time and then next time you might be doing, you know, something else for the presentation or this or that. And I think it's just really shown me that, you know, you can still work with others and, you know, accomplish goals and just really think about, you know, it, it makes you grateful when you do get [00:20:00] to come back
and stand there in front of, and work alongside of people. You know, it, it, it makes you just really appreciate it. Like when you look out and you see people smiling back at you and you're smiling at them, it's just a different experience. It really is because, you know, beforehand it, it's like maybe you were wearing your sunglasses or your hat and, you know, when that was going on,
I would just go up there and I'd be like, okay, I just feel like you guys are movie stars and I have to, I have to put my sunglasses on, or I have to put my hat on because you guys are just so incredible that, you know, I just got, I gotta get these on, you know, and I would just kind of make light of it and, and make a joke of it, you know. But it just, it makes you grateful to see that, grateful to be alive.
And, you know, I, I hope that this message will encourage others. I hope it will encourage other people who, maybe they're in Georgia or maybe they're in other states, I'm not sure, but you know, whoever it is that is, you [00:21:00] know, dealing with this or dealing with something similar, just to not give up, right?
Because sometimes, like I was describing to you, probably the rock bottom was at first, that first February, you know, only very shortly after I saw her, where it was, I was being dragged outta there essentially because I couldn't stay, you know. And, and you know, it's easy in that moment to say, you know, maybe, maybe I'm just not gonna be able to do this anymore.
But, you know, if you push through, sometimes even in the hardest. Moments when you push through that on the other side of it, you look back and you know what you're like, you know what, I still do have some growing to do. I still have some more to get through with this, but you know what, I'm not where I was a year ago and a year from now
I won't be where I am now. And I think it's about mindset too. You know, it's just your mindset and you know, it's like you were saying, like you can still accomplish goals. It may look different than what you thought. Sometimes things are not and are always in our control or in our, in our [00:22:00] hands. We can't control everything.
You know, even though, you know, we probably always want to, but you know, regardless of that, there, there's still a way to reach the goal. There's gonna be another pathway and so...
Jill Brook: Oh, that's fantastic. Has it changed your view of the healthcare system at all? I mean, it sounds like you saw a lot of doctors. It kind of sounds like, you know, the old fairytale you had to kiss a lot of frogs and Dr. Cutchins turned into your prince and made all the difference. And it also sounds like you've had a lot of reactions to a lot of drugs. And so I don't know, how do you, how do you feel about the healthcare system and medicine now?
It seems like some of it's been so good for you and some of it's been so bad.
Megan: Yeah, I, I think that what I think about it is really, you can tell right away probably because I went to 22 plus people, who's going to listen and who's not. Right. And so when I go in [00:23:00] there, I can tell right away are they gonna give you the time of day? Or is maybe there's something deeper going on in their life that day.
I don't know. You know, you never know. You wanna always assume the best of people. But that, that is just the kind of care that she gave was really, you know, listening, taking notes, really studying and inquiring about what's going on, you know, with you. And then, working a plan together and sharing next steps, and then also sharing kind of her process of elimination as to like, what, what could be going on?
Here are all the options as to what could be going on, and let's narrow it down. Whereas like in contrast beforehand, I kind of just kept hearing the same answer, but in my heart I felt it wasn't the answer. And, you know, I don't know if that's really something, I'm not a doctor, you know. So, but, but I, I just felt like, you know, I'm doing the, the PT, I was doing the physical therapy for vestibular issues and I'm, [00:24:00] you know, I'm not saying that I don't have some of that.
I probably also have some of that going on as well. You know, but it was, I was doing that, I was doing everything that they were asking me to do, the ENTs, and you know what? It wasn't improving. It wasn't. And I had a deeper question. What's going on? Why is my heart rate abnormal? There's something different going on here.
And you know, I did go to actually a regular cardiologist first prior to seeing Dr. Cutchins. And, you know, it was still kind of up in the air. Then even, you know, they, they did notice that I had tachycardia on the monitor, but that was about it. You know, they didn't notice anything else. And then they were one, then they sent me to rheumatology.
Jill Brook: So I, talk to a lot of patients who've had to see so many different doctors before they find the right one. And most of them say it's exhausting, it's demoralizing, it's depressing, it's expensive, it's difficult to get the time off. Like, did you just [00:25:00] have it in your nature to keep going till you found somebody with the answers?
Or was it tough? Like, did you ever think of just kind of like giving up, oh, nobody's gonna have any answers, or do you have any tips for somebody who's, you know, they've seen 10 doctors and none of them has been the right one yet.
Megan: I would say that my biggest inspiration is my parents. They actually, they, they're completely fine health-wise now, but both of them had cancer and so they pushed for second and third opinions. Right. So, you know, my mom had ovarian cancer. She really pushed and found that out. You know, she kept going, kept digging in.
Same with my father had lung cancer. He pushed, he, you know, if my, if my dad had stopped after his first opinion, he would not be living today. Because they told him, you know, stage three b lung cancer, you're not, you're not going to live. He had to push and travel to New York and he had to go to Sloan Kettering and get a second opinion.
And then [00:26:00] after that they wrote up the treatment plan sent it back down to Georgia and you know, he's here today with no lung cancer. So I would say that those two probably are what drive, you know, that that model for me growing up is what drives me to continue going. Right. Like I saw that. I saw two adults in my life going after that, even when the answer might not be there or the door may shut.
Now, I will be honest with you, I did have some struggle with that. You know, I had a neurologist I went into and guess what he, he was like, you know, I, I don't think there's anything wrong with you. I think you have anxiety, and this is quite honestly a waste of my time. And when I asked him the question, you know, why is my heart rate doing that?
I've never had that in my whole entire life. He blew it off. You know, he made me walk down the hallway and he is like, you seem fine to me. I was like, I'm not walking down the hallway. I'm, you know, grabbing onto things and I'm very dizzy, [00:27:00] but you know, he blew it off. Same, same with ENT. ENT was confusing as well because I went to three of them,
and some were saying, you know, this is vestibular. You had a vestibular neuritis that attacked your inner ear or labyrinthitis attacked your inner ear. You know, that's what's going on here. You know, there's not really much we can do other than physical therapy. And you know, then there was even someone else that,
you know, was trying to push for some other medication. I tried to take it. I, it was a medicine that I had taken a long, long time ago, and I took it and I had an adverse reaction to the point where it was a rash spreading in my sternum, spreading. I was like, this is, something's not right here. You know, and I had to call 'em up and say, hey, I can't take
this, unfortunately. And so I am very grateful because I remember that week before I got in with Dr. Cutchins, that whole week I was out of work, and it was the last week before Christmas. And I just remember thinking in my head, you know, I, I'm [00:28:00] at a loss for what to do. You know, I, I, I'm not sure what I'm going to do next because no one seems to really have the answer to this, but I do know that this is more than an ENT problem.
I'm sorry, but it is. I understand it's, it's partial, but there, there's something deeper with this. You know, I used to get this rash before, I will say before mono and COVID, like on my face and chest area and arms. I would get it before COVID and mono. I would, for certain foods, like sometimes foods would cause it.
I went to three different allergists, got the allergy sensitivity food tests, you know, the allergen prick test. You know, none of them were coming up. They would tell me it was preservatives, like monosodium glutamate was the first diagnosis for that. Then, you know, a couple years later I'm like, okay, I got the COVID shot and right, right after I got the COVID shot, I experienced actually I did also experience dizziness after that too, so I'm not sure if that was a factor,
also. It could be. But then, you know, I went to the allergist after that. I'm like, yeah, I kind of had this reaction. It was kind of [00:29:00] weird. I, I was feeling dizziness after it. And you know, I noticed also more food sensitivities. Like I was just like, this is weird. Now I have a list of so many foods that I'm reacting to.
I did not have this before. Like it's so strange, you know, when you're younger able to eat tomatoes now it's like a big problem. Gluten, you know, one of the things Cutchins did also recommend, I haven't had it again since, you know, last February was gluten. Gluten is completely out of my diet. I have never went back to it.
And for a while I'm like, you know, I don't really know if that's helping. Like I would think it for sometimes, you know? But then after a whole year, I was reflecting on it today and I'm like, you know, I am not where I was, I'm not where I was seeing pinwheels, seeing black, unable to finish the workday.
And what did I do to get to that point? Well, I listened to her and I did not eat gluten again, and I also wore the tights, the Medi Mediven compression, 20 to 30. [00:30:00] I also took the Nuun tablets. I also keep trying these antihistamines and other medications over and over until we find, find one that's, that's kind of working for me so far, which is the ketotifen, you know?
So, I just think that, you know, she shows in her practice, how to be relentless towards a goal of getting better. And then it inspires you to do that too, because you, you don't wanna give up on yourself. Yeah. It, it can be though, I would say that the, it's such a difference though, from what it was before.
You know, sometimes I talk to other people that I meet who, who might be experiencing this. And it's crazy that, you know, a year ago I could barely turn my head left or right without like an extreme dizziness. Or, you know, getting up and seeing black or a pinwheel. That, and you know, when they say that to me, they're like, you know, I may just wanna stay home and give up.
I'm like, you know, you gotta, I keep asking, you know, what is your dream and what is your passion? Because that's going to fuel you. You know, there are many people, you know, [00:31:00] they, their family is a part of their dream. Mine is. And so, you know that that's gonna fuel you and that's gonna really get you to push on, beyond some of the challenges that you're experienced.
It's not easy though, that's for sure. But I, I, I admire everybody that, you know, is pushing through and, and going through it and just, you know, letting them know they are not alone and, you know, it's, it's going to be okay.
Jill Brook: Can we do a speed round where you just say the first thing that comes to your mind?
Megan: Sure.
Jill Brook: What is the drink you find the most hydrating?
Megan: Pink lemonade Nuun. The packet.
Jill Brook: What's your favorite way to get salt?
Megan: Making homemade popcorn and using Celtic salt.
Jill Brook: What's your favorite time of the day and why?
Megan: It used to be, you know, when the sun was out during the day, but now it's probably early evening when the sun goes down because it's a lot cooler outside and you can just kind of reflect on your day and think about what you wanna do next. [00:32:00] Yes.
Jill Brook: Where is your favorite place to spend time and why?
Megan: You know, I, I always love seeing family, so a lot of times it's been my favorite place has been to go, my husband and I'll go visit my parents in Ellijay. And so that, that would probably be our favorite place, just being close to family and getting to spend time with them. I also, I haven't been in a while,
but, you know, maybe in, maybe in about two years, but I love getting to visit my sister in New York. She's actually four years younger than me, and so that's, that's another special place anytime you get that sister time.
Jill Brook: Nice. What's one word that describes what it's like living with chronic illness?
Megan: I think it's inspiring because every single day, you know, people, people are pushing through and sometimes on the outside people may not notice what's going on with you, but you are still pushing through. And that to me is truly inspiring. You know, you, you are inspiring others, 'cause if, unless you share with
someone, no one will ever know what's you're go, [00:33:00] what you're going through. And you, you know, I've started to meet people that it's, you know, they actually do have some of that going on, but they, but they're just so positive and inspiring and it, it makes me, it inspires me then to wanna be positive towards others as well.
Jill Brook: What's some good advice you try to live by?
Megan: The best things in life are not things at all. That is my favorite quote. It has been shared to me by my mom sometimes during her challenging times. She has relied on that quote. And it is one that I continue to bring because really it isn't about things, you know, in this life. And family, you know, friends those are the things that are really,
really the most important. You know, you, you, you never get enough time with that, and it's just, yeah, just really appreciating that in life.
Jill Brook: Oh, beautiful. Okay. This is my last question. What do you wish more people knew about POTS?
Megan: I wish they knew [00:34:00] that if you continue following the same routine over and over again, you will see results little by little. Like if every morning you wake up and you are continuing to drink your electrolytes and salt before getting out of your bed. If you are putting your stockings on before getting out of your bed, if you are wearing them throughout the day, if you're putting your legs up on the wall before going to sleep, if you are continuing to hydrate across the day, those little things, little by little will change and they will improve for you.
And sometimes it's just we might not see the whole staircase. We might not see the castle at the end of the yellow brick road. Right. We might not be at Oz yet. Right. But I do think that if you take it step by step, the journey, it's gonna continue to improve. It's gonna continue to grow. And yes. And I think, you [00:35:00] know, maybe, maybe there, there are people who don't really know what POTS is or you know, maybe they're not familiar with it.
Just, you know, being, being a listening ear to someone who is dealing with that and that, that is one of the most genuine things you can do because it lets that person know, you know what, I see you, I hear you, and I'm with you. And so I think that, that, that would be the takeaway for both groups.
Jill Brook: Awesome. Well, Megan, thank you so much for sharing your story and your insights with us, and I know that everybody listening really appreciates it and wishes you the best going forward.
Megan: Thank you so much, Jill. It was an honor to get to spend this time together and just share and just really get to connect with others who are, who are experiencing POTS. And also just very grateful for Dr. Cutchins and her team as well, their great support in this. And just a truly, she's truly a remarkable human and I am [00:36:00] just, I'm just grateful for all of you.
So, yes, thank you.
Jill Brook: Yes. Thank you, Dr. Cutchins. I'm sorry that I think we probably just made your waiting list twice as long. Okay, listeners, I hope you enjoyed today's conversation. We'll be back again next week, but until then, thank you for listening. Remember, you're not alone, and please join us again soon.
