Episode 59 – The Founding of Standing Up to POTS

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 Kate (Host): Hello POTS patients and people who care about POTS patients, like I do. I'm Kate Pederson, the Director of Social Media for Standing Up to POTS, and today I'll be interviewing the founder of Standing Up to POTS, my mother Dr. Cathy Pederson, for an episode of the POTScast Diaries. You already know about her professional credentials, but today we're going to share with the listeners more of our family, personal life, and why we are so committed to this community. So, to get us started, I'm going to ask you, what do you think you'd be when you grew up?

00:58 Dr. Pederson (Guest): Hmm, yeah, when I was in college even, I really thought I would be a physical therapist. And so I had done 200 hours of observation-sort of work. I always had an interest in teaching and I come from a family of teachers, so that was another option. But it wasn't until I was really a junior in college that one of my professors, Dr. Bowles, said, "You know, Cathy, I think you ought to think about graduate school." And so, I did. And I, I never looked back.

01:30 Kate (Host): And so, remind us again, what are you teaching?

01:33 Dr. Pederson (Guest): Yeah, so I'm a full professor at Wittenberg University in the Biology Department, and I teach courses in human anatomy and physiology, neurobiology, and pharmacology for majors, and then I actually developed a course a year or two ago for honor students on chronic illness and the health care system.

01:54 Dr. Pederson (Guest): Oh wow, that's cool.

01:56 Dr. Pederson (Guest): It's really fun.

01:58 Kate (Host): Yeah. So how did you come to adopt myself and my sister?

2:01 Dr. Pederson (Guest): Yeah, so my life has been unique, I think, in a variety of ways. And one of those is I just never found my partner, my person. And I was in my mid 30s and I didn't want to live my life alone. And so I decided that I was going to adopt. And I had a lot of friends in graduate school - and I went to graduate school at Rutgers, which is out on the east coast - a lot of friends who were Chinese or from another Asian country, and so I really was enamored with that culture. I liked the food. I decided this is what I was going to do. And so when I was 34, I started the application to adopt Lily and then I was 36 a couple years later when I started to adopt you.

02:50 Kate (Host): And how was the trip to China to adopt us?

02:54 Dr. Pederson (Guest): It was pretty crazy, you know, pretty surreal. So I went with my mother - your grandmother - to China. And, you know, at first it's getting used to the time change depending on whether it's daylight savings time or not, it's 11 or 12 hours off from where we were in time in the United States. And so, we did a lot of touring there trying to get us onto that local time, get us some culture. So we went to the Great Wall of China. We went to the Temple of Heaven, the Emperor's palace. It was a lot of fun. And then several days later is when we actually went to meet the children. That was really sort of something, too. And most people, I guess, haven't been through this process. So what happens is you travel to China and you already know the child that's going to be yours - that matching takes place, and it takes about six weeks or so to get the paperwork together then, after they've identified that child. And then you fly to China to meet and then adopt them. And so, the first time was with your sister Lily, of course. And so all of the parents were in the room, and grandparents I guess, were in the room in the Chinese hotel. And the nannies came in and each one had a baby on their hip, and so you could see all of the families really looking, "Which one is mine, right?" Can you pick out? And Grandma actually said that Lily, your sister, was the most beautiful of all of the babies. And she was whispering this to me and she said, "Whoever gets her is so lucky." But she didn't look anything like the picture that they had sent, so we didn't think she was ours. And that's who we ended up getting, you know. With you it was even weirder. We had a bigger group, and so they've got all of the parents in the dining room. And the nannies stood out in the hall. And so with Lily's group, they wore the traditional clothing from the orphanage. With you, they dressed you up. And I don't know if you remember this, Hun, but there were these little pink and white fancy outfits. Nothing like you were used to wear and all of the babies were in matching outfits. So we could go upstairs and look at them. I saved it for you. So it was just very different sort of atmosphere for yours.

05:17 Kate (Host): And how was bringing Lily, like at two years old, to adopt me?

05:21 Dr. Pederson (Guest): Yeah, she was three actually. And she was a handful. [Laughs] I'm thinking, "What am I doing, you know? I'm trying to take care of my mother and then I've got the three year old and I'm on my way to adopt an infant." And it was really crazy. But she ended up being - and I don't mean this in a bad way - but, the mascot of the trip. She was three years old, she was cute as a little button, and everybody there was going to adopt a little Chinese girl. And so she was really beloved. She was like the rock star of the trip. Everybody knew Lily and where Lily was, and of course she's a little bit extroverted anyway and always has been, so that was a super fun part when we went to adopt you.

06:06 Kate (Host): Yeah. So I'm sure it was a lot handling me and my sister when we were both so close in age and young. So how was that life, before POTS happened?

06:16 Dr. Pederson (Guest): You know, it was great. We were sort of a normal family, except that I adopted you as a single mother. So it was - it was me and my girls, always. My parents actually moved to Springfield when we adopted you, and so they were here to help, which was really lovely. But before Lily got sick, I mean, we did what normal people did - we went to the zoo. We went hiking. We did crafts. We painted. We had picnics. We did all of this stuff. And I think unfortunately, hun, you don't really remember that because when she got sick, you were about 8, and that's pretty young for people to have a lot of memories. So that's one thing I wish we could change. There's nothing we can really do about it, but I know that you don't remember a lot of those outings when you were little.

07:07 Kate (Host): Yeah, I don't really remember too many of them. We have some pictures and videos, so it can sort of bring up a few memories, but it's definitely more distant. But you and I have talked about how we have our lives before POTS, which I don't really remember too much, but then we have our lives after POTS. So can you talk a little bit about how Lily was diagnosed with POTS and how it kind of changed her family dynamic?

07:30 Dr. Pederson (Guest): Yeah, that was - that was really something. She was at the end of 4th grade - so you were in 3rd grade - and it was crazy. So, she spiked a fever and she had headache, sore throat, stomach ache, and so I know enough about medicine to be dangerous, right? So I'm thinking strep throat. And Lily has always been a kid - when she pops a fever, she pops a fever. So, she had a fever of 104, 105, right? So, we go to the doctor and I really thought the strep throat would come back positive. And it didn't. And so, I think they probably gave her some antibiotics or something at that point. And of course, we are taking fever medications and that sort of thing. But she got over the infection but she didn't get well. And so, Lily - and and I know you know this about her, even though most of your memories were after she was sick - she loves school. She's smart. She's very social. She really likes to be around people and talk to people. And she would drag herself to school - remember, this is the end of 4th grade, but on the days when there were field trips when they were going to an old school house or something, she would beg me for her to stay home. So the fun days when most kids really want to be there, my kid is saying, "Mom, please don't make me go. I just can't do it." But she would go on the academic days. So really really strange. But as a parent, I think my biggest issue was trying to balance. So you weren’t sick, and I'm not married. So, you know, we started running to children’s hospitals and doctors’ appointments and you would go with Grandma and Grandpa. And they loved you dearly and they took fabulous care of you. But you wanted to be with me. And I think that was very difficult. I know that really weighed on me, as your mom. But Lily - and again I don't know how much of this you remember - was adding symptoms every couple weeks. And if I'm being completely honest, I was terrified. You know, I teach these medically related classes. I had no idea what was going on. So, the fatigue never went away after that infection. She started getting brain foggy. You could almost see her, especially when she was tired, you could see it in her eyes, like the wheels are going trying to think, but there's no traction there. She started getting pain. And so the first pain was like if you touched her legs. Eventually she got neuropathic pain. I know you remember that because we had to be so careful.

10:04 Kate (Host): Oh yeah.

10:05 Dr. Pederson (Guest): Even a piece of paper touching her legs, she would shriek in pain. And then it felt like bee stings, and she said snake bites. And then the pain moved to her arms, so now she had it in her arms and her legs. And you were a big help. You were a pretty little kid - 7-8 years old - and you really were scared, too. I think, I don't know if you remember this, but she would eat and have incredible abdominal pain to the point where she would cry and literally lay on the ground in a ball. And you, Kate, have always been just this big-hearted kind person, even as a little little girl. So, you would run - we learned pretty quickly that if we put ice packs on her stomach, that in 10 minutes or so she was better. And so you would run. She would shriek and go to the floor, and you would run to get her ice packs to put on her abdomen. So, all this stuff that, you know, is not normal for a kid who's 10, Lily may have been 11 by then. We ended up buying her wheelchair when she was 11 so that we could try to do some things together as a family. You know, she started having hot flashes and chills. And again, when she was hot flashing, we were packing her with these ice packs, and when she was freezing running to get the blankets. It was difficult - it was a difficult time, for sure.

11:30 Kate (Host): Yeah, I don't remember too much of those early diagnosis stages. I do remember you guys leaving for the hospitals and I would stay with Grandma and Grandpa. And one day I forgot my recorder here at home, so I went to school without it.

11:42 Dr. Pederson (Guest): And you got in trouble.

11:43 Kate (Host): Yeah, yeah.

11:45 Dr. Pederson (Guest): Right? You got in trouble. And so here it was - I was at Cleveland Clinic with Lily, and it was a three and a half hour drive from home and our appointment was early, so we had gone the night before. And I know you were so upset 'cause, you know, you always wanted to do the right thing and have everything ready. And you were - you were really beside yourself about that.

12:05 Kate (Host): Yeah. And as far as symptoms, I don't really remember too much of those early stages. I do remember running and getting ice packs, but not really the in a ball of pain after meals. I think I sort of blocked that out.

12:18 Dr. Pederson (Guest): There was a lot going on and you were young. We were trying to keep you living your own life. That's some of the hardest thing, is trying to balance what she needed with what you still needed. You still needed me, right? Because you weren't - you weren't very big either. So that was that was a tough time, for sure.

12:39 Kate (Host): And then we finally got a diagnosis. So, can you talk a little bit about how that happened?

12:44 Dr. Pederson (Guest): Yeah boy, that was - that was really something. We were lucky because we lived close to a number of highly ranked children’s hospitals. And so, we were really going to Cincinnati Children's, which was ranked number one in the country at that time, for pediatric hospitals. And I'm really lucky 'cause I teach that human anatomy and physiology and I had been teaching for a number of years at that point. So I had some great students who I felt like I could call when I didn't know what to do. And I did that several times. I also, at that point, was doing MRI research and so I don't know if you remember going to see Dr. Osborne at Crystal Clear Imaging - he'd show you the scans and stuff when you went with me. He was super nice. So, I had physicians who didn't know what was wrong either or were saying, "Look, based on these symptoms, I think you need to see a neurologist or you need to see a rheumatologist." So I made a bunch of appointments and I made them right in a row. So, we went to Cincinnati Children's every two or three weeks for months and months, and my thought process was if we found the answer, I could cancel the next set of appointments, right? But sometimes it takes you several months to get in. So I just sort of staggered these appointments, got them whenever I could, and see what happened. Turns out that was a good strategy. Took us nine or ten months to get her diagnosed, which is really, really fast for a POTS patient, but it was 9 specialists. So apart from our primary care team, we saw 9 specialists, and that ninth one was the rheumatologist and he's the one that ended up diagnosing her. So, it was tough. And I should say that those other 8 - they were trying. They were running blood tests. They were running urine tests. They ordered MRI and other imaging, and everything came back normal. And so here is this kid who is obviously sick. But it looks like - on the testing - that everything is perfectly fine. And so it turns out, what we needed was a tilt table test. Finally, she failed something, right? We were so excited because I knew that that was the beginning to finding the answers.

15:03 Kate (Host): Yeah, and it was really good to get a diagnosis finally, but how did you feel knowing that it was POTS? Something that you've never heard of even though you're a neurobiologist and there's not really a cure - like, how did you feel when you found out that this is what she has?

15:22 Dr. Pederson (Guest): I was ecstatic. I was incredibly naïve, Kate, at this point, if we're being honest. And so, in my head, we had been battling for 9 or 10 months trying to figure out what was going on. I thought once we named it, we would start treatment and go back to our normal life. Maybe she would need some medication or physical therapy, but largely our life would become normal again. And of course, that's not what happened. But initially I was over the moon excited to have a name.

15:55 Kate (Host): How has your life shifted, like living with POTS? Like I remember this a little bit better than before POTS, but from your perspective how has it changed?

16:02 Dr. Pederson (Guest): I think that's when my real balancing act had to come in and it was really difficult because it became clear within a year after that diagnosis, she was no better, and in fact, maybe she was worse than when she was actually diagnosed. We had switched to Cleveland Clinic. We had been to Nationwide Children's. We ended up going to Pittsburgh Children's again, all very highly ranked places. And my kid is sick. I mean, really medically disabled. But you, my love, had boundless energy. So I have one who is, I mean, can barely move off the recliner - and I know you know this part well, you remember this part - and you that just wants to go out and see things and do things and all of that. And so there was no middle ground, very difficult to find a middle ground. You two don't even like the same movies, where we could all sit in the same room and watch a movie together. You know that's true, right? So to find something that the three of us could do together and enjoy together was really, really difficult. And so I felt really torn when I was sitting and watching TV with your sister, then I wasn't out doing things that you wanted to do. And when I was taking you to tennis, running to lessons and matches and all of that, then she was home by herself. So that that was really difficult. And I hope, honestly, that both of you know how much I love you and that I did my best.

17:40 Kate (Host): Yeah, I definitely get that. Like, it was really difficult, I mean, being a single mom.

17:45 Dr. Pederson (Guest): Yeah, it would be easier, I think, if I was married because one parent could take one child and the other parent could take the other. We did have, you know, my parents - your grandparents - here close, but it was tough. And both of us are tearing up a little bit and our listeners maybe can hear that a little bit. But this is the truth of it. POTS does not just affect the person that has POTS. POTS affects the siblings, the parents, the grandparents, the friends, and it makes life different. Not necessarily worse - I mean, we've had different opportunities. Certainly we wouldn't be taping a podcast if this hadn't happened. But, you know, there have been silver linings, but this has been difficult. No two ways around it.

18:29 Kate (Host): Yeah. It's definitely been difficult, but we've found a way to turn it into something good. So, I remember the way we started Standing Up to POTS was through my sister and I writing an illustrated book. So, can you describe how that was?

18:44 Dr. Pederson (Guest): Boy, that book was really something. You know, Lily wrote it for a contest. It was an essay contest. She was in 6th grade at this point, so she had been sick for a year and a half, maybe two years. And she won the contest. And so, she got to go to a special program. I think you won a year or two later. So she got to go to the Young Authors’ Symposium at Wittenberg, I think. And that was a great opportunity for her, but we decided to turn it into a book. We got a small grant from Thrivent - and they call them Thrivent Action Grants. So that was the very first Thrivent Action Grant I think that we had ever gotten. And we decided we were going to publish a book. And you have always been very artistic. And so, you decided you were going to illustrate the book. So we used Lily’s words and you drew pictures, and then we photocopied it and made little books. And we raised over $1,000 selling these books that went to POTS research. And a friend and actually a member of our Board of Directors, Matt Buehrer, said, "You know, you oughta start your own foundation. I don't think there's much out there right now looking at this, and you guys would be great. The book can be the start of this." And I was like, "Whaaat? Start a nonprofit?!" This was not on my list of things to do, right? I was working full time. I was a single mom. I had a sick kid, I had a highly energetic healthy kid and it wasn't on my radar. But you know, we talked about it, the three of us. Do you remember that, Hun?

20:27 Kate (Host): Not really.

20:28 Dr. Pederson (Guest): We sort of said, "OK, let's do it." And you two helped me with the name Standing Up to POTS.

20:35 Kate (Host): Do you remember the story of how you came up with the name?

20:38 Dr. Pederson (Guest): Tell me.

20:39 Kate (Host): So we're watching TV and a commercial came on and it was by the foundation, Autism Speaks, and so you were kind of interested in that because when you're autistic, you're not really great, or you don't speak as much. So you decided to kind of use POTS to flip that on its head because most people with POTS can't stand for very long or else they pass out or they feel really bad. So you decided to come up with Standing Up to POTS because it was kind of like standing up against it, but it was also like how POTS patients can't really stand, so we're standing for them.

21:14 Dr. Pederson (Guest): I love that you remember that. That's exactly right. That's exactly what we did. And the three of us sort of talked that through together, right? We were sitting in the living room and came up with this name that's stuck. And so, you know, we're incorporated and we're a 501(c)(3) with the government. And yeah, it's - that was the beginning. And at that point, you know, if we're being completely honest - I know that I didn't know what I was getting into. I never would have thought that we are where we are today, if we're being brutally honest. Again, remember, single mom working full time, one sick kid, one healthy kid, but it has been a true joy. Now, what I hope is that you don't feel like I neglected you for running this organization in my sort of spare time.

22:06 Kate (Host): No, I don’t feel that at all. I really admire you for taking the time and standing up and trying to give money for research. And you should talk a little bit about how much you've worked - like people don't really see the work that you put behind this organization. It really is a family grassroots organization that you've started just out of your recliner. Like, you spend hours after working at college all day, you came home and you'd start working on Standing Up to POTS and you're just really driven and motivated for this.

22:36 Dr. Pederson (Guest): Yeah, you're right about that. So, especially when you guys were home. So both of my girls now, for our listeners, are in college and so that makes things a little bit different. But yeah, she's exactly right. So I would work all day at Wittenberg and then I would come home and take care of my girls. I was on the tennis courts. So Kate was a varsity tennis player, all four years. And I didn't go to every away match, but boy, I went to a lot of them, right? And I was there for all the home matches. So I really tried to be at the band concerts and marching band and you know tennis and swim meets and all of that stuff. But after that, I would. I'd work for a couple more hours on building the website or working on social media or the 5Ks, and that's where you really started getting involved with the 5ks. You used to run them and you were good! For our listeners, I'm going to brag on my daughter a little bit - she won the women side couple years ago, right Hun?

23:35 Kate (Host): Yeah.

23:36 Dr. Pederson (Guest): Two or three years ago, you were in high school, and she had a a marching band contest - I think was actually a double header. So she ran the event, got the trophy, ran into the restrooms, changed into her uniform, and then we had a friend actually - 'cause I was still running the event - who took you to meet the bus at the first stop. Do you remember that?

24:01 Kate (Host): Yeah, I do.

24:03 Dr. Pederson (Guest): [Laughs] That's, I mean, that's how our lives were then. A balancing act, I think is is really important. But for you, you started pretty young, helping to design the T shirts. You were so artistic and at this point you hadn't done a lot of graphic art. You do a lot now, right? You are director of social media. And folks, those graphics that you see coming through Facebook, Instagram, Twitter - that's Kate that you're seeing, right? Very talented and a teenager is still. So you've done a ton of that work now. But it all started, for both of us really, with the 5K.

24:40 Kate (Host): And it's really grown through our new podcasts, and now you're getting interviewed for NPR and TV, and lots of exciting things. Can you talk about that a little bit?

24:51 Dr. Pederson (Guest): Yeah. You know, when I started Standing Up to POTS, I said that my new motto is going to be 'say yes to opportunities.' And for folks that know me, like you know me, I'm not the person that people are drawn to when you walk in the room. I'm not the big personality, necessarily. I'm sort of an introvert who quietly and happily does the behind-the-scenes work, and so these interviews [Laughs] - they stretch me a little bit. But I am really committed to trying to get the word out about what POTS is. And I think we're in a golden moment now with the pandemic where so many people are developing long-COVID, like your sister developed POTS after mono. So a lot more people are talking about it. They're interested in it. They're thinking about it than were a decade ago when Lily first got sick. And so yes, in the last couple of weeks I've had a couple of these interviews and it is a little bit nerve wracking, but I try to center myself and think about what my goal is, and my goal is to represent this community the best way that I can so that more physicians, more healthcare practitioners, more families, are aware of this illness.

26:09 Kate (Host): So it's been an amazing story hearing about how you started off not thinking you're going to be a college professor, and then you decided to become one. And then you adopted me and my sister from China as a single mom, and then Lily got sick and it took nine or ten months to get her diagnosis. And through that struggle you founded Standing Up to POTS and you started the podcast and interviewed and done some really amazing things. And I really look up to you for that. Like, you're really great role model to see as I grew up. So, I'm just wondering if you were to give advice to myself or Lily or anyone else out there, do you have any advice to share?

26:47 Dr. Pederson (Guest): Let me first say thank you, Dear, for that. I really appreciate that. My advice - that I want people to know that you don't have to have everything planned out. And you, Honey, are my planner and you like exactly what's going to come next. But, you know, some of the best things that have happened in my life, I didn't know what's going to happen when I was your age. And so I guess I would say don't be afraid to take that road less traveled because it might lead you to do great things that you have not even imagined yet. And for our friends and family with POTS, let me say hang in there. There are people who are really working behind the scenes like I am and in other places to really try to make a difference and improve that quality of life. So, stay with us. Keep hoping. I think there is hope now more than ever.

27:47 Kate (Host): And I have one final question for you, how would you like to be remembered?

27:53 Dr. Pederson (Guest): I'm getting a little older, Kate, so I'm starting to think about this in a way that I didn't even ten years ago. And as both of you are going off to college, I hope that first and foremost that that you two remember me as being a good mom, that you feel like I did my best for you. So that would be #1. Probably tied for #2 - I get a lot of joy from my students at Wittenberg, and I hope that I made a difference in their lives as well, that they look back at our time together fondly. The third thing would be Standing Up to POTS. I'm truly honored to represent this community. Hopefully I represent it well. But I feel like I've got a unique set of skills and talents that allow me to push this whole illness community forward in a way that that maybe would be harder for other people.

28:54 Kate (Host): Yeah, you kind of the perfect combination of everything to just really make a difference in this world. And I definitely know that I will remember you really well as - just as the role model you've served to me growing up and seeing you dedicate so much of yourself to everyone else, it's been really great. And I definitely think that Lily feels the same way.

29:13 Dr. Pederson (Guest): Thanks, Honey.

29:15 Kate (Host): I'd just like to thank you for being interviewed for this show. It's a little bit of a unique circumstance - me interviewing you - but I just want to say I love you and thank you and I'm really proud of all the work you've done.

29:26 Dr. Pederson (Guest): Thank you, Dear.

29:27 Kate (Host): And hey listeners, thank you for listening. Remember that you're not alone. And please join us again soon.

29:35 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.thepotscastcom. Thanks for listening. © 2022 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]