Episode 24 – POTS Diaries with a POTS spouse, Mike from CALink: https://tinyurl.com/fczt2ura

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.

00:30 Jill (Standing Up to POTS): Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook and today we have an episode of The POTS Diaries where we get to know someone in the POTS community and hear their perspective. So today we are speaking with Mike Brook who is a long-time POTS spouse. He's a computer programmer and data analyst who has volunteered a lot of his time and expertise for several projects in the POTS community. He has made free apps. He created patientscount.org to help researchers collect survey data more easily. He has helped with data analysis on several research studies and he is 1/2 of DoodleThru, the web comic about POTS and related conditions. He is also my husband of 21 years, which means that POTS and related conditions have put him through a lot, but he's here to tell the tale. So Mike, thank you so much for joining us today as our first POTS spouse.

01:28 Mike (Guest): Thank you, I'm just happy to be first at something.

01:31 Jill (Standing Up to POTS): [Laughs] So let's start with some real basics about you. What is your age? Where did you grow up and where do you live now?

01:41 Mike (Guest): Well, I'm 47, thanks for reminding me about that, and I grew up in New Hampshire. I now live in California, Northern California, with my wife Jill, who's somewhere in this house.

01:55 Jill (Standing Up to POTS): How would your friends describe your personality?

01:59 Mike (Guest): Oh, uh, I'm not so sure... I think I have been told that I have the personality of a mid to large dog, mid size to large sized dog. I don't know what that means other than that I hope it means that I have plenty of energy but I'm also somewhat calm, at least.

02:22 Jill (Standing Up to POTS): OK, so how did you meet your wife and did she have pots or related conditions when you met her?

02:30 Mike (Guest): So, we met in college and I don't think she did. I mean, maybe in hindsight we could say that there were some clues, but certainly it wasn't anything that that was obvious at the time.

02:43 Jill (Standing Up to POTS): OK, and can you give us a snapshot of what your life looked like together before your wife’s POTS got too severe?

02:50 Mike (Guest): Sure, let's see. We lived in Los Angeles. We were in our 20s. We were - we were hard working, sort of early career people. We did a lot of fun things together. We went to restaurants all the time. We went to beaches, and we went hiking and went to concerts. We went to a lot of theater. We spent a lot of time stuck in traffic. I think I even got my wife to go to a Dodger game once or twice. We enjoyed the weather, which was very novel given that we came from New Hampshire and Wisconsin and I worked at a large company. And my wife - should I call you my wife? Should I call you Jill or should I call you, you? What are we doing here? I'll call you Jill. Jill worked, she had a small - her own small business. I worked for a big company. She had her own thing going on in a small town. It was a lot of fun actually.

03:47 Jill (Standing Up to POTS): Yeah. So, when your wife’s POTS started getting debilitating, what did that look like from your end?

03:56 Mike (Guest): Well, I would say confusion. I would say there was obviously a lot of struggle. I would say there was maybe panic at times, it felt like panic and a whole lot of frustration. There was a lot of pain. These things kind of came and went, I would say, although I think maybe more like over time, I guess, maybe you collected more of these kind of negative things. A lot of effort, at least at first, I feel like went into trying to keep things the way they were. Keep things sort of status quo. And so there were a lot of, I think probably a lot of dinners out where maybe you were kind of in a lot of pain, gritting your teeth the whole time, but the idea was that that was, you know, a part of our lives and so it was sort of, you know, something that we didn't really want to admit defeat on that. And so we had, I'm sure, a lot of uncomfortable car rides and times at restaurants and plane trips and all of that stuff. So, I think you were really good at hiding it, but you know at some point it got to be pretty impossible to hide, but I think that just kind of not willing to admit that there was something really serious going on was kind of a hallmark for a while.

05:26 Jill (Standing Up to POTS): Yeah, and I think loving our life so much made it harder to give up on it. And so maybe there was a bit of hanging on too long, getting too desperate, too far gone, and then kind of just falling apart. But how has your life changed because of your wife’s POTS?

05:52 Mike (Guest): Well, in a lot of ways we've moved many, many times, searching for cooler climates and cleaner climates. We've had a few false starts. We ended up up here in the mountains in California because it's pretty cool, it's very clean, there's a lot of things that we can do outside that really work for both of us. We ended up in Alaska for a while in search of cool and clean, and I've basically pivoted into being a telecommuter. So I used to go into an office like a lot of people and over time it was sort of OK, well, telecommuting a couple days a week, telecommuting a little bit more. Finally, working from home almost all the time and now, finally - I still work for an organization in Alaska, so there's no possibility of me going into the office from where I am now. So, it's I've completely severed that. But it's important.

07:02 Jill (Standing Up to POTS): And just to be clear, the reason that you transitioned to work from home is because at times I was fainting or passing out or having dangerous mast cell activation reactions and you kind of needed to be on call for a lot of that. That was a pretty big duty.

07:22 Mike (Guest): Yeah, yeah, I think so. That was a big part of it. Also, being, you know, when you're a kind of a part-time caregiver, there's logistical things, too, that you just sort of need. It's not just about being a de facto medical person, it's also about being a driver. It's also about being a stander in line at the grocery store. It's also about all of those kind of really small things, but things that would be impossible for you to do and would cause you to have all of these really severe limitations on what you could do. So yeah, I think that was part of it. However, I would be lying if I didn't say I wanted to go that way anyway. I mean, working in an office is not and has really never been a dream of mine. So, being able to work from home is was absolutely not a negative for me. And then of course, when the pandemic came around and everybody was working from home, we were set up for it. I mean, this was really a nonevent for us, whereas it was so disruptive for so many people. So I really feel like we were a little bit ahead of that one.

08:38 Jill (Standing Up to POTS): One more life change that comes to mind is there was a time at which I had a hard time being upright at all, spent a lot of time sitting on the ground or on the sofa, losing sort of everything I was attached to and sort of the antidepressant that did it for me was a small, cute dog even though we already had two cute dogs. And so, I think you became a little bit busy, very busy trying to kind of look after me, after a puppy, after two extra dogs, moving five times at one point all the way to Alaska. And kind of the visual I have in my head that kind of represents what you do is juggling, dropping me off with three dogs and suitcases at the airport so that we can move to Alaska, but you don't know how long that I can stay conscious. The three dogs are, you know, exceeding technically what's really easy to take on a plane ride like that. And you're basically having to juggle 20 things at once and keep it all together. And I feel like that is just a microcosm of maybe the last decade or two. [Laughs]

10:01 Mike (Guest): Well, if I can correct that story a little bit, it's actually better than that, I think, because I think what ended up going down was we sent you, we put you on a plane to Alaska by yourself because you were absolutely melting down in the hot California weather. So we got you on a plane and I don't remember all of the circumstances of what actually happened, but I do remember one very specific vignette which is I had three dogs attached to leashes in my left hand. I had a backpack with all of my worldly possessions on it and that was all I could afford to take because I needed the remainder of my hands to carry three dog crates. So I had three dogs and three dog crates in my hands and backpack on. And of course, Jasper, the oldest dog, took advantage of that opportunity to relieve himself in the middle of the airport. [Laughs] Actually, he did it twice within 20 feet, so at any rate that's the vignette that sticks in my head.

11:08 Jill (Standing Up to POTS): Yeah, you never know what's going to come up, and it's kind of unrelenting. But that brings me to the next question which is what helps you keep up your physical or mental energy to deal with all this and what gives you strength or what helps you cope?

11:27 Mike (Guest): Well, I think I'm actually quite lucky. I don't consider it a challenge to cope, to be honest with you, and I think part of it is that I like a puzzle. I like feeling like I need to be at my best. The story I told about the dogs, I didn't tell to elicit sympathy because I was having the time of my life. The idea that you have to be at your absolute best to get through a situation, I kind of enjoy, I'll be totally honest. I really do. And so I feel like there are times like that where I need to be pretty sharp in order to juggle things. I think what that does is it makes me take my own health very seriously. So, for example, the last thing that I want is a blood sugar crash. And so, it really does get me to take it pretty seriously what I eat, how much exercise I get, I take sleep seriously and all that kind of stuff. And part of the reason is that there's a little piece of me that kind of needs to be a little bit on call. I need to have a little bit of extra bandwidth. And I'm only relating all that to say I actually enjoy that. I feel like it's a, it's a puzzle or a challenge, but it's one that I really kind of relish.

12:48 Jill (Standing Up to POTS): Well, I know that you have always said you enjoy solving hard problems and so I feel like maybe I became your hard problem. [Laughs] Maybe not me, but a lot of my needs became unconventional and you have definitely risen to the occasion with some creative solutions. And the one that comes to mind is at one point I was trying so hard to still be able to work and be upright and I did a lot better when I was in water than when I was out of water. And so you had created for me a desk that I could float in, and it was made from a fisherman's inner tube with like a little sling to sit on and waders because I had been spending so much time in the water that my skin had become raw and so I was starting to having have to limit that. And I'll never forget the day that you showed up and he said, you know, "Hey, wifey, I got something for you to try." And it was waders, a fisherman’s inner tube, and a platform where I could put a laptop. [Laughs]

14:02 Mike (Guest): Yeah. For the people that don't know what this fisherman’s inner tube is, it's a regular old inner tube - the big kind - the big black rubber inner tubes that are in trucks, but it's covered in this sort of nylon sleeve that is designed for fishing, so it's got all of these pockets, all of these zippered pouches, and it's got this like flat platform where what a fisherman does is guts fish on there. I don't know if you knew that, Jill. You were working, you set your laptop or your iPad or whatever you were using in the spot where you would have been gutting a fish, and is it - that's why there is actually a ruler on it so that you could measure your fish and decide whether you could keep it or throw it back. But it makes a perfect desk. It's a floating desk. Now, you need the waders because otherwise you'll be so wet and cold all the time that you won't last in there for very long.

14:58 Jill (Standing Up to POTS): Yeah. So, creative solutions - definitely a forte of yours, which I very much appreciate as we've gone through the phases of trial and error for lots of things. But is there anything that you know now about living with POTS that you wish you had known sooner?

15:16 Mike (Guest): Uh, no, because where would the surprise come from then?

15:20 Jill (Standing Up to POTS): Seriously?

15:22 Mike (Guest): Well, I've learned a lot through this experience. However, the majority of it I don't feel it's things that if I had known it ahead of time, would have been beneficial. The one thing that does come to mind, however, is something that I believe, mercifully, it's a mistake I never made, which is to – I don’t know - maybe get accusatory toward you, that is, toward you. So the way this manifests itself in a lot of people is the sort of it's all in your head kind of thing, right? And correct me if I'm wrong, just don't do it on this podcast, wait till we're done, but I don't think I ever stepped in that mess. And now, the thing is what I didn't realize is how important it is not to step in that mess. That is kind of the ultimate insult you can hurl at somebody who's coping with a chronic illness. I did not know that at the time. I know that now. It is a mistake I will never make and for other people out there, don’t make that mistake.

16:24 Jill (Standing Up to POTS): Well, and I know you had a little extra pressure because I know there were people who were kind of saying, "Hey, Mike, don't you think that you are humoring this woman when this is just her being..." you know, there were some things thrown around about it being all in my head or such, and so you didn't give into that, even though I think you took some heat for maybe looking like you were indulging me.

16:53 Mike (Guest): I don't recall anyone quite phrasing it that way, but I think you and I both took heat for seemingly being kind of scatter brained. It was kind of like, "Boy, these two can't decide what they want to do. First they move here. Then they move there. Then they move all the way to Alaska." I think a lot of people felt like when we moved to Alaska, we were just running away from something as if we had robbed a bank and we were trying to get away with the goods, you know, or I don't know what.

17:24 Jill (Standing Up to POTS): Right. And for listeners, just to explain ourselves, the reason that we did move to Alaska is that I was getting so much blood pooling and pain when I'd get warm that I'd pass out, so I was having a very hard time staying conscious unless I was shivering cold. So, we kept our house at 58 degrees. You and the dogs were shivering. I was shivering, but shivering was the only way that I could kind of stay a little bit sort of functional. And so our moving to Alaska, in my mind, was a really desperate attempt. We had no answers at that point. We had no diagnosis. We didn't, you know, we had tried everything we could think to try. And I just wanted to stay conscious. I wasn't able to really think long term and I think that one thing we have always encountered with our friends and family maybe is that we don't want to complain. We don't want to look like complainers. We're very fortunate. We have a great life, but we did have this one really tough thing, but it's almost as if you don't complain then nobody understands what you're doing and why, and you can just look like nutty people who move every six months. And so that was a little bit of a struggle, but that's why we moved to Alaska and I think why nobody understood.

18:51 Mike (Guest): Right, I think that there's - yeah, there's this thing about what is the right level of - you say complaining, but it's also like showing vulnerability - what is the right level? Because yeah, you're right, we are super fortunate. And we're also both very positive people. We're not - we're not the least bit negative, and we want to keep it that way. But at the same time, if you have this sort of Pollyanna outlook on everything and you go and you move off to Alaska, you look like a couple of just sort of unserious sort of play boys and girls. And so yeah, I think that was that was part of the - that was part of what I think maybe it looked like to other people.

19:37 Jill (Standing Up to POTS): So you do a lot of things for me. I think you've mentioned you wait in line at the grocery store. If you bring me to the grocery store, then when it's time to get in line, you hand me the keys and you let me go to the car. You drive me places. I mean we could go on and on for like hours about all the things you do. My favorite thing that you do for me, I just want to share because it took me about eight years to build up to being able to cross country ski again. But that is your favorite activity, I live to do that with you. I so love being able to do that with you, but I'm still at a point with my POTS where I can really only be out doing things if my calves are pumping. My calves pump blood upwards. That works great for me. And the issue with cross country skiing is that your calves are pumping if you're going straight or up a hill, but if you're going down a hill then you're just in - there's no calves pumping and I would quickly pass out. And so you have made it possible for me to cross country ski down hills. Do you want to describe what you do to make it possible?

20:48 Mike (Guest): Well, it's not very high tech. All I do is hand you my ski pole and you sort of hold on to that. And then I snowplow behind you and slow you down. We actually tried some very high-tech versions of that where I created this belt with this lanyard that was sort of spring loaded. And I would clip that and then you wore a belt and I would clip that to you. So basically it was almost as if we were a rock climbing duo, you know, where we were belayed to each other. But we were going down a hill and I was just, I was the brakes and you were you were skiing as if nothing changed. You were skiing, full tilt going down this hill and I was the brakes. But then we realized actually, we don't need to work that hard. I'm just going to hand you my pole and I'll just, you know, keep it, I'll keep it slow back here and you can do your thing. So now we do this on down every hill. We get a lot of strange looks, but people don't judge us. As a matter of fact, they stop us and they say, "Hey, aren't you the two that have some sort of an illness that you're dealing with or something?" I don't know how this rumor got around, 'cause it's not like we tell anybody, but now people are kind of like, "Oh, those are the two that do that thing because they have to do the thing." Now the funny thing is they don't know whether I'm the one with the illness or you're the one with the illness. I halfway think they think that I'm blind and that you're the leader and I'm the blind skier. But, so nobody really knows what's going on with us, they just know that something is going on with us.

22:24 Jill (Standing Up to POTS): Yeah, and for listeners I do realize that I am so lucky to have this man doing these things for me. [Laughs] So that's one of the more fun, exciting things that you do to help me. But then there's also the really just boring, mundane, day-in, day-out things that you also do for me, like standing in lines. And I used to really worry that for someone who is busy and educated and has lots of things to do that that would be something that you might really resent. But the other day you made a fun, to me, comparison between spending an hour doing those little mundane things for me versus the hour that you spend at like a staff meeting every day. Do you mind sharing what you said about that?

23:26 Mike (Guest): Well, I think what you're referring to is, I'm on the lookout for times when I can spend a modest amount of time - say an hour - and unlock half a day for you, for example. And lest you think that, like you just described, that I'm somehow too good for that, I will remind you that I spend - I work full time, I work 40 hours a week - at least twenty of those hours are in meetings that have far less importance to the world, much less to you than, I don't know, standing in line for you at the grocery store or helping you down a hill on cross country skis, because what that does, that's a force multiplier. Because what that does is that with a modest investment of my time, it unlocks a half a day or an entire day for you, and it might make you sleep better that night, and that might make the next day better, and all this stuff. So it's actually the best time that I spend. It's a very important time, and it's definitely not beneath me or anything like that. It's actually really important. I mean, there's something else here which is this idea that little wins beget other wins and those beget more wins and so on, until you've actually made a big difference. Like I think about when we bought a van probably 10 years ago, we said we can't deal with small cars anymore. So we got rid of our small cars and got a van, got a minivan. We took the seats out and put dog beds in it and it was it was a laying down kind of a van - super comfortable. But what that allowed us to do was to travel a little bit further, and that allowed us to get to some places that had cooler weather and better activities for you, like the beach. We could go surfing. Surfing was a perfect activity for you because it was cold, because you're wearing a wetsuit so there's almost like wearing compression outfit, and it was a thrill. So now, rather than being stuck at home, we were out doing something and by the way it was surfing. Surfing is very cool. Everybody wants to surf. So we were having fun surfing and then you'd be cold, you'd be invigorated, you could ride home in comfort, not have your blood start pulling out. Then get home. You feel good, you get to then catch up on some of the things that your body hadn't been letting you do - I don't know, maybe you had some emails to write or something like that. You might sleep better that night and the next day was better than it would have been otherwise. All that from a little van, you know. So it's just like those little things compound, and if you could just be on the lookout for those little things, there are those options everywhere and they make a huge difference when you start adding them all together. I think they do anyway.

26:28 Jill (Standing Up to POTS): Yeah, and that that reminds me of something that you had said a long time ago that helped me enormously mentally. You know, there was a time where I just felt like I absolutely couldn't do much of anything. I felt completely useless, and you had told me, "Just try to do one good thing a day. That's it." At that time, like not that it's your job to coach me, but that helped me so much. And you know it's funny because as a nutritionist, I knew that, right? When somebody has a goal that seems too big and too onerous, you break it down into a smaller one, and until it seems like something that you can do. But I hadn't had the presence of mind to do that to myself, and you kind of gave me this permission and even just encouragement to just do whatever I could do, and to build on that day by day. And you know, I'm reminded that, you know, so now it's been like 20 years. And yeah, if you just do the tiniest little thing and try to improve yourself, then, boy, by the end of that 20 years, that really, really adds up. But I don't know that I would have done that without you're saying it.

27:47 Mike (Guest): I don't actually remember saying that to you, but I'm glad that you remember it that way, and I'm glad it worked.

27:53 Jill (Standing Up to POTS): [Laughs] OK, so how about this - has POTS taught you any life lessons?

27:57 Mike (Guest): Oh yeah. Yeah, many. One is that you can get used to it just about anything. You have managed to get used to an autonomic system that doesn't work very, very reliably. Boy, I mean if you can get used to that then any twists that life throws me I should be able to get used to as well. I've learned that routines are super important. You've mentioned a number of them, but we have a routine now. We have actually quite a few routines, but we are really good at sticking to them. Why? Because when we don't stick to them, we get sort of swatted down. So, we do we stick to them and we're really good about that. I've learned that health is pretty fragile, but how important it is. I mean, I think my outlook on health has - I've always been sort of a health-oriented person, but nothing like I am now. I mean, I think that I've learned from you how it can be fragile, but also how important it is. And then from having this sort of small bit of responsibility as a caregiver and a POTS spouse makes me take my own health really seriously because I realize that I need to lend you a little energy sometimes, and so taking that really seriously, I think, is really important. I think we've both learned to do your own thinking. I mean about everything, but I mean I'm thinking about medical things right now. I mean the idea that there's an expert out there that's just ready to ready to solve your problem - I hope that's the case more now for people that are just getting started with this syndrome, but back when you were getting started, that was definitely not the case. Even the great doctors that you visited, I feel like you did so much research ahead of time that by the time you got to them, you pretty much had yourself figured out and it was really a matter of confirmation and you were right about everything. But wow, nobody takes their health as seriously as they take their own. So, and you definitely took your health incredibly seriously, especially during that sort of like pre diagnostic phase. So, I've got a bunch of other I've got a bunch of other lessons, if I can keep going.

30:28 Jill (Standing Up to POTS): Yeah, absolutely. Can I tell one story though that has to do with what you just said because it is just funny that you had said that learning to do our own thinking and I just have to share a story that when I was first having symptoms and looking for answers, you helped me more than anyone because we are so old that there was not yet any patient advocacy groups. There - I don't even know if there was Google yet. And so I was having trouble finding any information or anybody who could help me. And so when websites were almost a new thing you helped me make a website called mylegshurt.com. Do you remember that?

31:13 Mike (Guest): I do remember that. I mean, we basically took the symptom that was the most extreme for you was leg pain. And I know it's not like that for all POTSies, but definitely for you it was. You were kind of - and it was a blood pooling thing. You know, we know that now. We didn't know that then. We had no idea what was going on. All you knew was that your legs hurt. So we found a domain, mylegshurt.com, bought the domain, and I think, I don't know, you set up a WordPress site or something like that.

31:45 Jill (Standing Up to POTS): Just hoping someone would get in touch with us. [Laughs] So anyway, that's all to say, that's all to say that you are right that I hope it's now easier for people to get answers. But let's get back to other life lessons. What else has POTS taught you?

32:03 Mike (Guest): I mean, I think that you've done a lot of self-experiments. You're pretty much always self-experimenting and attempting to - it's not random things that you're trying. These things are all have a plausible chance of working. And you're a research oriented person, you know. You were in grad school for research into health psychology and you participated in research studies. Now you're a research assistant in a statistician. So you have a high level of respect for proper peer reviewed research, but I think you would agree that waiting the 6, 8, 10 years for the studies to kind of trickle out that might help guide you, that's a little - that's a lot too long when a quick self-experiment can teach you a lot. So I'm seeing you try things all the time and I think that's a great thing to do and it's a great lesson. I mean, it's something that I've adopted too and I'm not trying to solve a chronic illness. So, I think that's a really important one. I have a different, a little bit of a different outlook on things. I mean, I've already mentioned that focus on health is a big thing for me now, but also just a different value system almost, because I think so highly of health and clean environment and things like that that I choose to spend my money on that, instead of things new clothes or a fancy car or something like that. So I will happily drive an old car and wear 1990s vintage clothing, which I do, and spend that money on organic food and to me that's the right, that's the right way - that's kind of the right outlook for me to have. I wasn't always like that though, you know, so that's something that's kind of evolved. You mentioned our dogs and how Toby, who is our little dog, he was basically a medicinal dog. I mean, he was the guy that got you through a lot. We had two other dogs at the time, but there's nothing like a little puppy to get you through and he is a wonderful dog, as all of them have been that we've had, but I guess we'll call this a life lesson. I mean, when you don't know what else to do, you should just go walk the dog right or or or hang out on the couch with a dog, if that's what you can do. But wow, talk about something that is worth folding into your life. That's - and I definitely have, so that's a new thing for me too, so.

34:46 Jill (Standing Up to POTS): Excellent. So, would you say that things have gotten any easier over time from your angle?

34:54 Mike (Guest): Hugely easier, yes. I think back to when you were just really struggling and all of the confusion and frustration and the pain that went with being in the early stages of this, particularly before you had any kind of a diagnosis or any clue, really, what was going on and there was no support system for you. You had a lot of people thinking it was in your head. I think back to that, wow, we've come a long way from there. I mean, I think a lot of it has to do with, I mean, since that time a really great support system has grown up online around this – foundations, Facebook groups, podcasts now. You know, that kind of stuff so. So I think that it's kind of amazing what a what a different landscape it is, so that's great. At the same time, you've gotten diagnoses that you were seeking and that has allowed you to enter kind of a new phase where it's sort of, "Alright. I know what I've got. I know what ought to work, or at least I have some candidates. I'm going to try a bunch of stuff, and then once I find some stuff that works, we're going to turn it into routines." And that's what we've done. That's where we are now is this idea that we kind of know what we need to do and we've cemented it in. And wow, that is a whole lot easier than it was. Thinking back 12, 15 years ago, we've come a long way from there.

36:42 Jill (Standing Up to POTS): So do you think that anything positive has come from all of this? Are there any silver linings?

36:51 Mike (Guest): Absolutely. I mean, there is a level of freedom. I think that's what it feels like to me, anyway. I hope you kind of have the same feeling, but there's a level of freedom that that goes with having to start over a few times. I mean, I told myself I would myself I wouldn’t quote 1960s country rock, but I will quote Kris Kristofferson: "Freedom is just another word for nothing left to lose." Sorry, I had to do it. [Laughs] So, but yeah, it's almost like hitting a little bit of rock bottom there. I mean, I don't want to be flippant or derogatory about it, but you and I have talked about how we feel like we hit rock bottom at one point and fortunately bounced off the floor, at least I think we did. And so - but wow, once you've been through that, you almost feel like nothing can get me now. Like, I've seen it, I've seen the bottom. So, you taught me that. I mean, I think that I saw you deal with that, and I think that we've been on an upswing ever since. I remember pretty distinctly when you were in tears and basically said, "I just hit rock bottom." It was not pleasant. But I will say that we made something out of it because we started trending up after that and it's been an upward and upward swing after that. So I guess I would just call it freedom. It's just kind of like, wow, I mean, once you've o- nce you've dealt with a lot of tough stuff, you feel like nothing really owns you anymore, and then you start to realize, wow, I was kind of owned by a bunch of stuff. I was owned by maybe my job or societal expectations, or some of this other stuff. And, I don't know you kind of - at least I'll speak for myself - kind of don't have the patience for it anymore and so that feels pretty liberating.

39:04 Jill (Standing Up to POTS): Yeah, I feel that too and that feels great. So just two more questions. First of all, what are you proud of?

39:14 Mike (Guest): That's easy. I am proud of this podcast, and the reason I'm proud of this podcast is because I had nothing to do with it. I have contributed 0 to this podcast except showing up when you told me to show up and answering your questions. But what that tells me, and you, you have POTS and dysautonomia and mast cell activation syndrome and you have you have the cluster, but the fact that you're able to host a podcast? I take as a sign that we're doing something right. So I'm totally thrilled that you're able to do this and other people that are participating in this project, too. So, I'm proud of this podcast because it's just - it shows that, you know, we're on the right track.

40:00 Jill (Standing Up to POTS): Awesome. Last question: why did you agree to let us share your story today?

40:07 Mike (Guest): Well, that's easy. I mean, this podcast is all the rage in my house and I just had to see what the fuss was about.

40:17 Jill (Standing Up to POTS): [Laughs] OK. Mike, thank you for sharing your story. Thank you for the computer skills, the data analysis, the cartooning that you lend to this community to help us get answers faster and keep laughing about our situation as much as possible. You are amazing, and, yeah, you're amazing. Hey listeners, remember, none of this is medical advice. Consult your health care team about what's right for you, because we're all so different. But thank you for tuning in. Remember, you're not alone, and please join us again soon.

40:56 Announcer: You can find us wherever you get your podcasts or on our website, www.standinguptopots.org/podcast and I would add if you have any ideas or topics you'd like to suggest, send them. You can also engage with us on social media at the handle, @standinguptopots. Thanks for listening and we hope you join us. This show is a production of Standing Up to POTS. © 2021 Standing Up to POTS. All rights reserved. [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.]