Episode 74 – POTS Diaries with Jolene from MN

00:00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive. This is the Standing Up to POTS podcast.

00:00:29 Jill (Host): Hello fellow POTS patients and super cool people who care about POTS patients. I'm Jill Brooke, your horizontal host, and today we have an episode of The Pots Diaries where we get to know someone in the POTS community and hear their story. So today we are speaking with the very kind Jolene. I know she's very kind because I was late and she was so nice about it. So that's all I know about her so far. I'm excited to learn more, but she has kindly volunteered to share her story with us so that the rest of us might benefit. Jolene, thank you so much for joining us today.

00:01:05 Jolene (Guest): Thank you for having me on.

00:01:06 Jill (Host): So let's start with the easy questions. Where are you and how old are you?

00:01:12 Jolene (Guest): I'm 39 years old. I currently live in Minnesota, a suburb of Minneapolis. And originally I'm from northern Minnesota, a small area called the Iron Range.

00:01:25 Jill (Host): Ahhhh. Like Bob Dylan territory, or? [Laughter] Every small town is known for something, right? What's your small town known for?

00:01:32 Jolene (Guest): Yeah, so Bob Dylan is from that area, the Iron Range. I believe he's from Hibbing. Don't quote me on that, but I think that's the city. So yeah, it's the northern part of the state. As for what we're known for, definitely a variety of different things. When you start thinking of northern Minnesota, it's things like wild rice.

00:01:54 Jill (Host): Did not know that. [Laughs] Hot dish?

00:01:58 Jolene (Guest): Hot dish for sure, yeah. [Laughs]

00:02:01 Jill (Host): Shout out to my mom, who's from northern Minnesota, so I have an affection for making fun of things in northern Minnesota.

00:02:06 Jolene (Guest): Oh nice.

00:02:08 Jill (Host): Tell us something about you. What are some things you're passionate about?

00:02:12 Jolene (Guest): I'm passionate about photography, meditation. I have a small dog that's a rescue dog. I enjoy volunteering. Things like that. Those are kind of, you know, what makes me tick in life.

00:02:24 Jill (Host): Very nice. When did you rescue your dog?

00:02:29 Jolene (Guest): So my husband and I rescued him...let's see, we’re just coming up on two and a half years now. So, he's kind of young and we're going through all the training stage and all of that, you know, that comes with rescuing so...but he's been fun.

00:02:42 Jill (Host): Very nice. What is your favorite thing to photograph?

00:02:46 Jolene (Guest): Right now, I would say landscapes. I've been getting pretty into landscapes lately and doing things like going out and photographic at sunset. It's been really fun. I just made a large print that I put up on our wall and that's the first time that I've ever kept one of the prints I've made. I've sold a couple off and things like that, so it's been really fun to actually have this piece of work that I made up on my wall. It's kind of different and fun.

00:03:10 Jill (Host): Very cool. OK, so how would your friends or family describe your personality?

00:03:16 Jolene (Guest): I think that would depend who you ask, for sure...[Laughter]...but I think definitely that I am introverted, very sensitive, an empath, quiet, shy...those kinds of things...can be extremely stubborn. [Laughter] But yeah, those are kind of things that just pop into my mind.

00:03:33 Jill (Host): So the sensitivity seems to come up often in our demographic. I don't know if it comes up more often than baseline. But do you like being a sensitive person, or no?

00:03:45 Jolene (Guest): I think it can be kind of a double-edged sword. At times I like it in that I feel like I can sort of meet people where they're at and have that piece of compassion. It makes it easy to, I would say, talk to people in difficult times, things like that. But at the same time, you know, you have a tendency to get hurt easier, and I don't have as thick of skin as I would like to in circumstances like that.

00:04:11 Jill (Host): Yeah, for sure. OK, if we make you brag about yourself for a second, what is something that you're good at?

00:04:19 Jolene (Guest): I would say at times photography. There's sometimes...I get home and I look at the back of my camera and I'm going, “What on Earth was I doing?” [Laughter] But overall, I mean, I have taken photos for a lot of people over the years and they've told me that they're happy with them. So I mean, I guess that would be the thing I would pick.

00:04:38 Jill (Host): At what age did you first have a sign of POTS? And the reason I'm asking is so that I can ask what your life looked like before then - if you had a time before then.

00:04:48 Jolene (Guest): Sure. So I, in general, had a very normal childhood as far as not having POTS symptoms. I didn't really develop anything until adulthood. Earlier on I would say in high school and college there were some things, but they were very mild. It was headaches. I've always had numbness and tingling in extremities, but, I mean, there wasn't anything that ever pointed to POTS or something as severe as POTS.

00:05:17 Jill (Host): So can you give us a snapshot of what your life was like, say, in the year leading up to the time that POTS hit? Like, what did your life look like at that time?

00:05:26 Jolene (Guest): So in the year leading up to the diagnosis, things were very normal. I was working an office job. My husband and I had moved to Florida, so we were living in Florida and getting to be as active as we wanted. I was able to do anything I wanted. Go out. Be in the Florida heat. You know, basically the activities that were in Florida were things in the heat. Like he we were going out and doing kayaking. We were snorkeling with manatees. I mean, just a lot of active things, and we enjoyed being out and about in this environment that was so different from Minnesota and we've since moved back to Minnesota. It just kind of took us full circle, but yeah, there was just a lot of normalcy. I really didn't anticipate anything medically coming up for me at that point.

00:06:14 Jill (Host): So what was your first sign that something was off?

00:06:17 Jolene (Guest): I started to have high heart rate, just sporadically. I would have runs of high heart rate and it even would take me into the emergency room periodically and I would be told “anxiety” or things like that could be causing this. “You might want to talk to someone see a cardiologist.” “See a therapist.” That sort of thing, and I would be sent home. That happened a few different times.

00:06:43 Jill (Host): So what happened? Did you believe him that it was just anxiety? Did you consult a therapist, or what happened with that?

00:06:51 Jolene (Guest): At that point I did not consult a therapist. I had seen a therapist in the past and I wasn't not open to the idea, but I knew that there was something more going on and it wasn't just anxiety. I could tell by the way I felt - by looking at my pulse oximeter when I was completely relaxed - that these things were happening and these symptoms were coming up. So at that point I did go talk to a cardiologist and I had a stress test. The stress test was normal during the test and, at the end of the test, my heart rate spiked really high and it was really scary. When I was supposed to be recovering from the stress test, my heart rate just climbed and climbed and climbed and that's when the cardiologist said, “I believe you. There's something going on here. This isn't supposed to happen.” They had to give me a shot of something to bring my heart rate down even, and my husband had to come get me...and it was this whole thing, and that's when I knew like, OK, you know, we're dealing with something here that isn't normal.

00:07:51 Jill (Host): Right, right. So were you happy or unhappy to know that you had a definite cardiac issue, but that it wasn't anxiety?

00:07:59 Jolene (Guest): It was very scary at the time going through it, but at the same time, I felt validated and that there was something that this doctor was seeing. It was down on paper. There was no denying that I had a cardiac episode happen and from there I was able to get in...that cardiologist had referred me to an electrophysiologist - the first election physiologist I had seen. I ended up seeing three of them, and by the time I got actually diagnosed, at that point I was just so relieved to have something down on paper after fighting with, you know, whatever was happening and not really knowing.

00:08:35 Jill (Host): So how long did it take you to get the diagnosis from the first time you saw the doctor?

00:08:40 Jolene (Guest): From start to finish it took about seven months.

00:08:44 Jill (Host): So once you had the diagnosis, were you able to start finding things that helped very much?

00:08:50 Jolene (Guest): Yes, so from that first time when I saw the electrophysiologist, I had kind of gotten started. He introduced me to beta blockers. Some of the POTS things, but he didn't really believe that I had POTS at that point. It was manifesting a little bit differently. He thought maybe inappropriate sinus tachycardia was what I was dealing with, and what ended up happening was I had anesthesia for the first time for something unrelated, and that's when kind of the dam broke and then it was like...OK, now all these other symptoms started coming on. I was getting your typical dizziness that happens with POTS. You know, the tachycardia was constant and consistent with standing up now and all of that, so it kind of just snowballed. And then from there, I was traveling...my mom had a retirement party...I was traveling for that and I just got so severely ill while I was traveling. I ended up hospitalized. Had all kinds of testing, you know, the doctors trying to figure out if I had had a heart attack or what had happened. I mean, there was all kinds of things being thrown around. It was pretty traumatic, you know, going from not having ever had anything, medically...a surgery...I wasn't even on any medications. I barely had a primary care doctor and then having my whole world just kind of flip overnight. It was like we went from a slow burn to just the dam broke, and everything was unleashed at that point and I got really sick.

00:10:17 Jill (Host): So are you saying that the dam actually broke after you had the diagnosis? Like, you were kind of trying to deal with the more mild form of POTS that you were already diagnosed with, and then you had the anesthesia, that was it?

00:10:32 Jolene (Guest): At that point, once I had had the anesthesia, I still wasn't diagnosed with POTS, technically. The doctor I had been seeing had been thinking inappropriate sinus tachycardia still and that we were just dealing with that. But then all of the other symptoms came on and that's where, you know, the hospital started exploring different things and they said, “I don't think there's anything acutely wrong with you, but you do need to go see this electrophysiologist that we have who's kind of working onsite there and do a tilt table test,” and, you know, they had all these ideas for me and that sort of got the ball rolling. At that point I did the tilt table test. However, I was one beat per minute off, so I technically still was not diagnosed with POTS. [Laughter] So yeah, it was really tricky.

00:11:23 Jill (Host): Man. If you don't mind my asking...that sounds really horrible to be traveling and to have the dam break like you say...do you mind telling us about your worst moment with POTS?

00:11:37 Jolene (Guest): I would say my worst moment through all of this and it...it did...this story is kind of long and winding...I did end up with a second hospitalization. That ended up being the hospitalization that I was ultimately diagnosed. I was up in Minnesota, saw a different doctor in a different hospital, and that's when he was able to kind of get me on the right track. But I would say the moments leading up to that were the worst. I was released from my first hospitalization and I went home to my parents' house and I did not thrive at all. I could hardly walk to the bathroom. I was so out of breath, and just not able to really do anything, you know. Going up and down stairs was impossible. Showering felt impossible. I didn't understand, you know, how things could change so quickly, and I did have a referral into the Mayo Clinic, and obviously you know the Mayo Clinic being so popular, there was a very long wait time. And I thought, “how on Earth am I going to get through this?” You know, waiting several months to get into the Mayo Cli nikind of a thing. So I felt really lucky to have found the doctor in, you know, my second hospitalization, who was there. He was able to get me on the right track and start testing for things like, what kind of pots did I have? Did I have hyperadrenergic POT? Things like that, and he started running, you know, more appropriate blood work and tests and things like that. It was a tough go just trying to get the diagnosis, and I know that's common for a lot of POTS patients, unfortunately.

00:13:04 Jill (Host): So now that you know what's going on with you, and you've had a little bit of time to try different things to get better, how much improved are you?

00:13:14 Jolene (Guest): From my worst, I'm significantly improved. I still do have limitations in what I can do as far as...I'm pretty heat intolerant. That was one of the things uncovered at Mayo Clinic through a sweat test that, you know...I'm not sweating hardly at all and...I would say, the improvement though has been significant. I don't have those episodes anymore where, you know, I can't even walk to the bathroom. Things like that. So things have gotten a lot better just through finding treatments that work for me. It's been a lot of trial and error.

00:13:47 Jill (Host): So what do you think helps you the most?

00:13:50 Jolene (Guest): Out of everything, I honestly think it's just the hydration and salt that makes me feel the best.

00:13:57 Jill (Host): Do you have things that you can no longer do that you used to be able to?

00:14:01 Jolene (Guest): Yeah, I would say just picking up and going for a long walk is not something I can really do anymore. Just...kind of, the slow walking motion is really hard. Standing in line is really hard. I can handle it for, you know, a few minutes, but if it gets to be a long time...standing in line in the bank is just a nightmare for me. [Laughter] So yeah.

00:14:25 Jill (Host): Yeah, well, you mentioned heat intolerance. Is that part of why you moved back from Florida to Minnesota?

00:14:34 Jolene (Guest): That was definitely a factor that my husband and I considered. The biggest reason that we moved away from Florida, though, was because I was no longer really able to travel. I had a very bad episode - embarrassing and all of that - on an airplane where my heart rate just took off. I tend to be a spiker like that when things get in a flare. And we just realized that, you know, we're not going to be able to go back and forth to visit family anymore. That wasn't really going to be an option like it had been, so that was the biggest determining factor. We were really lucky and that my husband actually got a job where he had previously worked in Minnesota, and so moving back was pretty smooth for us.

00:15:15 Jill (Host): So, I just imagine that all the listeners right now are saying, “Embarrassing story on an airplane? Me too! But let's hear hers.” [Laughter] Is that something you're willing to share?

00:15:27 Jolene (Guest): Oh yes, absolutely. [Laughter] So we had been in the air going from Minnesota back to Florida and, all of a sudden, I don't know what happened. I was hydrated, you know, I was doing the things I needed to do to help control POTS, but my heart rate just took off, and I questioned if it had something to do with the elevation changing or something like that. There wasn't any other reason that I could figure out, but it did take off and so there I was upside down. I had the flight attendant...the poor flight attendants didn't know how to help me and I was trying to reassure them that this is OK.

00:16:04 Jill (Host): Wait a second. You said you were upside down, like you were sitting in your seat upside down?

00:16:09 Jolene (Guest): [Laughter] Yeah, I was trying to bring...

00:16:10 Jill (Host): On the airplane? [Laughter]

00:16:12 Jolene (Guest): [Laughter] ...I was.

00:16:13 Jill (Host): [Laughter] Let's just all take a moment to figure out how you got there, OK?

00:16:17 Jill (Host): Yep, embarrassing. [Laughter] Yeah, I pretty much just out of instinct, I went upside down and had my feet in the air. My husband was hanging on to my feet and I was trying to bring blood to my head, thinking OK, you know, my heart's not recognizing there's blood in my brain or something like that, you know, just thinking of the mechanics of POTS, and so I instantly flipped upside down and the people around us were so kind and just looked away... [Laughter]...I'm sure....[Laughter]...I'm sure they were wondering what on Earth was going on, but the flight attendants came to check it out and things like that. I had a heart monitor on so they knew that there was something legitimate, and they told the pilot, and the pilot went over the intercom and said, you know, we need to let this person off first. We have an ambulance. Waiting for her. [Laughter] And it was just so embarrassing and, you know, you never want to be that person who's the drama on the plane. But there we were, and... [Laughter] ...it was relieving to get on the ground and I could see my heart rate starting to normalize again and the ambulance was waiting for me down there. The EMT's were, and they took me off this plane and, you know, the heart rate was normal and the EMT's are going, “What happened? We don't see anything?”

00:17:29 Jill (Host): Of course, Murphy’s Law, right?

00:17:32 Jolene (Guest): Yep, and they're taking my blood pressure. Everything is OK and I'm going, you know what? This is a chronic illness, I think I'm fine. They offered to take me to the hospital, and of course I was fine the rest of the night, but it was just one of those things, you know. It's so unpredictable with POTS.

00:17:46 Jill (Host): Your husband, like my husband, has been through some things, it sounds like. [Laughter] How's this for him?

00:17:54 Jolene (Guest): Honestly, he's handled it like a champ. He's handled it...I don't think I could have handled things as well as he has. I feel awful that, you know, this wasn't what he signed up for. In my mind, I feel bad, like I'm holding him back from things, and he's been just a wonderful POTS husband...so supportive and I...I just can't say enough good. Like you said, he's been through so much. He's been through every single step of the way with me, so I've been extremely fortunate in that aspect.

00:18:21 Jill (Host): Were you guys able to joke about it after this airplane event?

00:18:25 Jolene (Guest): Oh yes. [Laughter] Yeah, to this day we still, you know, will crack jokes about it, and I think even more so, you know, we had more flight to do...that was supposed to have just been a piece of our flight. I mean, we landed in Georgia and we were supposed to remain on this flight to go to Florida, but we ended up renting a car instead, so....we were already cracking jokes in the rental car...[Laughter]...like, you know, you just have to make light of it at some point when something is so embarrassing, so....

00:18:57 Jill (Host): Ah, that does sound a little bit comfortable on the plane. I used to go to an infusion center in Alaska that had the kindest infusion nurse, and she would sometimes allow people to bring in their little dogs...and one day I came in and there was a patient in there upside down, just like you described. I was like “oh, that looks comfortable” and it turned out she had POTS as well, so I said, “can I try that too?” And so, it became a thing...being upside down in the chair was the way that some of us would go. I don't know. Maybe if enough of us gets POTS...[Laughter]...it'll be like...it won't be that weird anymore.

00:19:38 Jolene (Guest): [Laughter] There it is, starting a trend.

00:19:40 Jill (Host): Oh my gosh. So you seem like you're very strong, and you're smiling about all of these tough, tough things. What has helped you cope with all this?

00:19:52 Jolene (Guest): Definitely humor, that's been a big thing through all of this, and not that I've always been able to joke around, but just, you know, even being in the hospital. Having the nurses around me and cracking jokes with them kind of took some of that heaviness away from it. And that's just kind of my personality...that's, you know, my husband's personality, too. Or we crack jokes back and forth, so that has helped. In addition to that, you know, there has been some really awful moments and serious moments and, you know, a lot of tears shed and things. And in those moments, definitely my friends and family have helped me cope. Meditation...I'm hugely into meditation...that has helped me cope and my faith, I think, are the main things.

00:20:35 Jill (Host): So...I know that probably many of us listening - me included - have heard that we should try meditating and that the evidence is really strong that it helps. And I know that I have a mental block...I just have a hard time doing it because it feels like it's not going to give me the bang for the buck, even though I know that's wrong. I know all the evidence goes the other way, but can you talk about your experience with it and what has kept you excited about it? How long did it take you to feel anything? What do you get out of it? How long does it take you?

00:21:08 Jolene (Guest): Definitely! So, for me, meditation is actually something that I've been doing since I was a kid. I just didn't have the verbiage for it necessarily when I was young. But my mom would take me - I was kind of an anxious kid - and my mom would take me through sort of a body scan meditation where you go through and you relax different pieces of your body. And I have carried that with me ever since being a child and done that just kind of silently on my own, you know, before bed or something like that...and so, I think it kind of was ingrained in me all through these years and growing up. And so as an adult, once I started to get sick, that was something that I really went to and clung to. It felt like comfort for me, and I got just more and more involved in meditation. I mean, I started a group in my community...things like that. The meditations - and I hear you definitely...I know a lot of people struggle with really getting into it, and you know, seeing the benefits and all of that - the meditation that I think hooked me the most was the body scan meditation where you're actually doing something...you're in your mind going through each portion of your body and you're keeping your mind busy. I struggle more with the meditation that is less guided or giving me, you know, more room for my mind to wander away. From there, I went on to become a certified meditation and mindfulness teacher once I got sick.

00:22:35 Jill (Host): Oh, fantastic.

00:22:36 Jolene (Guest): So I really delved into it, and that's kind of my biggest passion right now.

00:22:41 Jill (Host): OK, so I have another question about this then. Do you think there's a difference between meditation and something else that someone would just find relaxing? Like so, for example, one reason I have trouble getting into meditation - even though I keep reading how wonderful it is - is that I tell myself that I could just listen to one of my favorite podcasts and that'll get me into a happy, good brain space, too...but, I'm sure I have that wrong. What would you say about the difference that you experience between meditation and just doing something relaxing?

00:23:17 Jolene (Guest): That's a good question, and as far as...if you're listening to something like a podcast - one of your favorite podcasts - and that's, you know, your focal point and that's keeping your attention and you're in the present moment, I think that's great. You know, you are getting that relaxing experience. And it's interesting because, I didn't realize until I became a teacher how many different types of meditations there are. You can do meditation while you're eating, while you're showering. You can do things like gaze at a candle and that's your focal point. There's walking meditation...so, I mean, meditation is not always, you know, what we think of...maybe...sitting silently for hours or chanting or things like that. There's definitely a lot more ways that you can get those benefits, and that's kind of what made me want to be a teacher...is to share some of that. I didn't know that...and, you know, my husband enjoys doing the walking meditation, and it just seems like it's not going to be one size fits all, and that's a big part of it...is finding what works for you.

00:24:19 Jill (Host): So, I had never heard of these either. Can you tell us a bit about what it looks like if you're meditating in the shower or at a meal or, well, walking?

00:24:28 Jolene (Guest): Yeah, definitely. A lot of times, for example, a mindfulness meditation...your focal point will be your breath. You know, you follow your inhale and your exhale, and that may not be for everyone. So, if you try something like a walking meditation, what you're going to be doing is bringing your focus into, for example, your feet and keeping track of those sensations and keeping yourself in the present moment that way. Or, you know, an eating meditation would be...what are the textures of the food that I'm tasting and what are, you know, the different sensations and flavors and all of that that come with eating? And that will be your focal point.

00:25:05 Jill (Host): So, is it correct...maybe I didn't even fundamentally really understand what meditation was about...but it sounds like it's about being in the moment and - I don’t know - you tell me what it's about. [Laughter]

00:25:15 Jolene (Guest): Yeah...no, you're right on track. Having the focal point is a big piece of it and also being present in the moment...and that focal point kind of taking you there.

00:25:27 Jill (Host): So, this sounds a little bit - I'm not educated enough to know how similar it is or not - but in some patient worlds, especially like with the mast cell activation patients, I'm hearing a lot about the Gupta program or the neural retraining programs which try to help you, I think, sort of harness the mental power to put yourself back into a relaxed state when your body starts getting away from you in a sympathetic over drive. And...is it a little bit similar, do you think? As far as you know?

00:25:57 Jolene (Guest): I've actually never done any of those programs. I've heard of them and I would love to try them at, you know...to even see what the difference is or what the potential benefits would be. But it sounds like there may be some pieces of similarity from what I've read, but again, I'm not 100% sure on that.

00:26:14 Jill (Host): OK, I will find someone to interview about that because I keep hearing great things about that, but the meditation piece does sound powerful. Now, before we started recording, you had mentioned that you had turned some of your experiences and your knowledge into a business. Is this your business or is that something else?

00:26:34 Jolene (Guest): The meditation is my business. So, I'm a certified meditation and mindfulness teacher and all of this came on because of my illness. I realized that I was getting deeper and deeper into meditation and just falling in love with it...and that I wanted to do more with it...and basically, at that point, I went on to get certified during the pandemic, and right now I have some meditations on Insight Timer that I've been published, and I'm hoping to be able to do some teaching within my own community.

00:27:08 Jill (Host): That's great, that is very neat. And do you find that pretty much anybody can benefit from it?

00:27:15 Jolene (Guest): I think there would be a meditation for everybody out there. You know there would be some instances that, you know, maybe a doctor would not want a certain person to do meditation for a different reason, but with the variety of types of meditations that are out there, I do think that most people would be able to find some sort of benefit, or enjoyment even, from meditation.

00:27:37 Jill (Host): So, if any of us are interested in doing the meditation that you created and put out there, how would we find it?

00:27:44 Jolene (Guest): So, I'm on Facebook under She Sought Health. I'm also on Instagram under She Sought health, and I do have my links on there also to Insight Timer. So, you would be able to access the meditations as well that are published.

00:27:58 Jolene (Guest): Very neat. OK, besides meditation, what else are your favorite activities or hobbies or things these days? I know you mentioned photography. Do you feel like your recreation or interests have had to change very much because of POTS?

00:28:12 Jolene (Guest): I do think that my interests and recreation had been limited to things that are going to be POTS friendly. I'm not able to, you know, do some of the things outdoors that I normally would do, like go hiking...things like that...going camping. I do actually have mast cell activation syndrome as well, and so that's an even more limiting factor with some things I used to enjoy. Like camping, you know, when people are having bonfires and things I just cannot be out there anymore. But yeah, definitely photography. The dog that we adopted has kept us busy with trying to learn some training techniques and teach him. And doing things with my friends and family. Obviously, with the pandemic, that's been extremely limited, and that's been hard over the last couple years, but generally, you know, I enjoy going out and doing things with them as well.

00:29:00 Jill (Host): So, do you think POTS has taught you any life lessons?

00:29:04 Jolene (Guest): I think POTS has definitely helped me appreciate the small things. I think POTS has also made me appreciate the people around me - the things they do for me - in an even deeper way.

00:29:18 Jill (Host): Is there anything you know now about living with POTS that you wish you had known sooner?

00:29:23 Jolene (Guest): I wish I would have known that POTS would still put me in the hospital periodically, that I would still, you know, struggle a little bit. Initially, I think some of my conversations and my expectations were that you do all the right things...you take the medications, you wear the compression, and things are going to be, you know...it'll be manageable, and that's the case for some people. It's not necessarily always been the case for me. I've still had trips to the emergency room for IV fluids. Things like that that, that I was, I think, maybe a little...a little too optimistic early on, so I kind of wish I would have thought that through or realized that earlier on, but...it is what it is.

00:30:07 Jill (Host): If you imagine that past self that was at their worst in terms of POTS - and I'm saying this because I assume there probably are some listeners right now who listen to this when they're not having a very good POTS day - is there anything that you would have liked to have heard from your current, more experienced self, if you could speak to that past self?

00:30:33 Jolene (Guest): I think what I would say is to seek out support from people who are going through what you're going through. Support from friends and family is wonderful and so appreciative. You know that can just go leaps and bounds in terms of where you're at mentally. But there's something about connecting with people who are going through what you're going through that can be just powerful. There's a quote by an author, Laura McKowen, and she says, “one stranger who understands your experience exactly will do for you what hundreds of close friends and family who don't understand cannot.” And that spoke volumes to me because it felt like, once I got connected through some of the Facebook groups - I mean, I've done things like the dysautonomia international conferences - and just finding people...it was just like a breath of fresh air, like OK, I'm not in this alone.

00:31:28 Jill (Host): Um hm. Yeah, that's great. That's great advice to your past self, and I'm sorry your past self didn't get to have it, but somebody out there listening does get to have it thanks to you. Could we cajole you into doing a speed round where you say the first thing that comes to your mind?

00:31:42 Jill (Host): Absolutely.

00:31:45 Jill (Host): Great. OK, what is your favorite way to get salt?

00:31:47 Jolene (Guest): Plantain chips.

00:31:48 Jill (Host): What is the drink that you find the most hydrating?

00:31:52 Jolene (Guest): I do a DIY Gatorade and it's basically tea, salt, and coconut water, and I mix that all up with ice. That's my most hydrating.

00:32:01 Jill (Host): Cool. What is your favorite time of the day and why?

00:32:06 Jolene (Guest): Evening, because I'm the least symptomatic in the evening.

00:32:09 Jill (Host): Where is your favorite place to spend time?

00:32:12 Jolene (Guest): At this point, I enjoy being at home. [Laughter] I'm kind of a homebody...yeah.

00:32:20 Jill (Host): Um hm. How many doctors have you seen for POTS?

00:32:23 Jolene (Guest): It's been around 12.

00:32:24 Jill (Host): How many other POTS patients have you ever met face to face?

00:32:29 Jolene (Guest): Several, just because I've sought that out.

00:32:33 Jill (Host): What's one word that describes what it's like living with a chronic illness?

00:32:38 Jolene (Guest): Unpredictable.

00:32:41 Jill (Host): What is some good advice that anyone ever gave you about anything?

00:32:46 Jolene (Guest): One of the PA's that I saw in Florida when I was leaving - I had a good connection with her, she was really supportive - she said, “Continue being a strong advocate for yourself,” and I think that doesn't necessarily just apply, you know, in the medical sense, but you know, just in life in general.

00:33:04 Jill (Host): What is something small or inexpensive, that brings you comfort or joy.

00:33:10 Jolene (Guest): Something small would be my dog and he brings me a ton of comfort and joy. He's fifteen pounds, so he's a little guy. [Laughter]

00:33:16 Jill (Host): Aww... [Laughter] Who is somebody that you admire?

00:33:20 Jolene (Guest): Dr. Terry Wahls.

00:33:22 Jill (Host): Yeah, me too. Do you want to say who she is for people who don't know her?

00:33:26 Jolene (Guest): So, Dr. Terry Wahls came up with the Wahls protocol. She has multiple sclerosis and came up with a diet strategy to help people who have MS.

00:33:38 Jill (Host): Yeah, and she's getting like all kinds of funding to have studies go. And you know what really made me admire her? She is so dedicated to what she does and she's so hard core, right? Like she has MS herself. She was the one who was in a wheelchair, could not walk, and was told she would never walk again and now she rides bicycles. So, she's making it happen, but she has to be pretty hard core and I recalled that she had been recommending certain fruits and vegetables, maybe like grown without pesticides or something, and people had asked her “what do I do if I don't own land? I don't have a way to grow any of my own produce.” And - I hope I have this right...I think this was her - she said, “Find some land. There's some land around that nobody is paying attention to. Go plant something, somewhere, a little hidden away and that's going to be your own little private spot and you can grow your tomatoes or whatever it is that you're supposed to be growing...” and I thought, wow. This woman is so committed. She does not let anything get in her way and that's why she is riding a bike when nobody thought she'd get out of a wheelchair, and so she's my hero, too. [Laughter]

00:34:48 Jolene (Guest): Yeah, she's so passionate. I met her once when she gave a talk in Iowa and it was like...I could hardly speak. I was just kind of, you know, fangirling I was... [Laughter] I admire her so much.

00:35:01 Jill (Host): She really walks the walk and so...she also has a phrase that I like because it's just so real when she's kind of talking about, you know, willpower to do what it takes, and she says, “yeah, it can either be bad or it can be really, really, really bad.” And sometimes I feel like OK, that's real, that's not sugar coating anything.

00:35:22 Jolene (Guest): Yeah, definitely. She is very real.

00:35:25 Jill (Host): OK, well that was such a good answer that you got me all off on that tangent. [Laughter] But thank you for bringing her up. OK, what is something that you're proud of?

00:35:34 Jolene (Guest): I'm proud of my husband. I'm proud of my sister. They both come to mind. I'm proud of my mom. I'm...there's so many family members that I am so proud of. They just instantly come into my mind.

00:35:46 Jill (Host): What is the toughest thing about POTS?

00:35:49 Jolene (Guest): I think the most difficult thing about POTS is the unpredictability. It's so hard to plan ahead when you don't know what your symptoms are going to be. That guilt kind of haunts me, when I feel like, you know, I don't know if I can commit to this big thing that someone has going on or buy a ticket to this. That's been kind of a mental struggle for me to, I guess, deal with.

00:36:13 Jill (Host): What is a gift that you would have sent to every POTS patient on Earth if you had infinite funds?

00:36:20 Jolene (Guest): Access to healthcare, for sure...to appropriate, knowledgeable healthcare.

00:36:25 Jill (Host): What is something that you are grateful for?

00:36:28 Jolene (Guest): My husband.

00:36:29 Jill (Host): Yay for all the supportive husbands out there...supportive anythings out there.

00:36:34 Jolene (Guest): For sure.

00:36:36 Jill (Host): OK, outside of your airplane upside down experience, have you ever had to sit or lie down in a weird place because of POTS, and, if so, where was it?

00:36:45 Jolene (Guest): Yes, I've had to sit down in a store before and just be kind of on the edge of the aisle because I was starting to pass out. It happened in Target once and I think it's happened at grocery stores, too. I don't really recall what I did. I think I just kind of took a seat on the floor and waited. I pretended I was looking at the lower things on the shelf, actually. [Laughter]

00:37:10 Jill (Host): [Laughter] What do you wish more people knew about POTS?

00:37:15 Jolene (Guest): I wish more people knew how to diagnose it. You know, just in the medical community kind of a thing. I think that would close the gap on diagnostic delay that some of the people have, you know...you hear about people living with it for years before they get diagnosed.

00:37:33 Jill (Host): Yeah...OK, and last question. Is there any final words? Anything you'd like to say to your fellow POTS patients out there who are listening?

00:37:43 Jolene (Guest): I think to the POTS patients who are listening I would say, you know, just keep going. As hard as it can be some days, just keep going and, you know, don't give up hope that things will get better.

00:37:55 Jill (Host): Beautiful. Well, Jolene, thank you so much for sharing your story and your insights with us. It's been really fun talking to you. We all really appreciate it, and we all wish you the best going forward.

00:38:07 Jolene (Guest): Thank you.

00:38:10 Jill (Host): And hey listeners. Thank you for listening. Remember, you're not alone, and please join us again soon.

00:38:17 Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you. This show is a production of Standing up to POTS which is a 501(c)(3) nonprofit organization. You can send us feedback or make a tax-deductible donation at www.standinguptopots.org. You can also engage with us on social media at the handle @standinguptopots. If you like what you heard today, please consider subscribing to our podcast and sharing it with your friends and family. You can find us wherever you get your podcasts or at www.thepotscast.com. Thanks for listening.

[Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopots.org]