Episode 22 – POTS Diaries with Brooke from Texas

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.

00:00:28 Jill (Standing Up to POTS): Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook, your hypovolemic host, and today we have an episode of The POTS Diaries when we get to know someone in the POTS community and hear their story. Today we're speaking with a woman, mom, and community leader that I admire for all her dedication to helping people with dysautonomia and related conditions. I'm excited to share her wonderful spirit with you. Brooke O'Shea is an executive coach who works with Fortune 500 companies. She is the mother of two Ehlers Danlos syndrome patients, one with dysautonomia, and she has done volunteer work in numerous different capacities to raise awareness and to advocate for patients. She is the current president of the Dysautonomia Support Network and she is so much more, which we'll get into. Brooke, thank you so much for joining us today.

00:01:21 Brooke (Guest): Oh my gosh, Jill, what a pleasure! I was so excited to be asked and just to have an opportunity to continue to spread awareness to people within our community and outside of it. So, thank you for asking me.

00:01:35 Jill (Standing Up to POTS): Well, I'm excited to share your story and your insights and your advice, because I think you've been through some stuff, and I think maybe you've had to learn the hard way a couple times, just how important it is for patients or families to be capable advocates for themselves, and even in situations where you would think that you wouldn't need to do that. But let's not get ahead of ourselves. Let’s start with some super basics. Can you just introduce us to Brooke O'Shea a little bit?

00:02:08 Brooke (Guest): Sure! So, I live in Coppell, Texas, which is in the Dallas-Fort Worth metroplex. I'm from Fort Worth. You had asked a little bit about my family before, so I'll tell you. I've been married 27 years to basically my high school sweetheart who has made this journey so much more of a blessing, and to have somebody by your side is really important. I have two daughters. I've got Reagan who's almost 21, and Delaney who's almost 19. And then we have 3 crazy dogs, one of which I'll call a COVID dog because she was our COVID rescue. And a little bit more, I mean, we have aunts, uncles, cousins, grandparents, great grandparents, that all live near us and support us and make this journey possible. And like you said, I'm an executive coach. I own my own business. I actually started my business when Reagan was in kindergarten, so I'd have more flexibility to spend time with the kids. And I just love what I do. That's sort of me in a nutshell of the most important parts.

00:03:21 Jill (Standing Up to POTS): You know, I don't think some people know what an executive coach is or what they do. And I think you're really good at it. And so can you tell us what an executive coach does?

00:03:36 Brooke (Guest): Absolutely. So, there's all different types of specialties within executive coaching and I'm sort of a broad executive coach, meaning I do a lot of different things. But some people specialize, such as being like a sales coach or a presentation coach, but mostly what I do is I work with leaders on their leadership skills, understanding their strengths, their development areas, helping them grow in those, helping them create a strategy for their team, helping them build stronger teams. Sometimes I work with the leader and their team. It's really just about helping them reach their full potential as a leader, which is really rewarding.

00:04:09 Jill (Standing Up to POTS): But I think that's a little bit interesting because I'm wondering if some of those skills might have come in handy when you found out that you were going to be having to kind of create an advocacy team out of your own family, and I kinda guess we'll get to your story - it did strike me that maybe some of your skills get used in real life.

00:04:28 Brooke (Guest): Well, I definitely one of the things I work on a lot with people is their network. Who's in your network? Who can you support? Who can support you? And I can just say I have an amazing network and that has been a huge help and a blessing as we've navigated this journey.

00:04:44 Jill (Standing Up to POTS): So let's get into your journey with POTS and Ehlers Danlos syndrome. What was the first sign that something was going on with the health of one or both of your children?

00:04:57 Brooke (Guest): Well, I thought about this question, and I was like, “Oh my gosh.” [Laughs] Reagan was 18 months old and my sweet mother-in-law used to watch her every Wednesday when I went to work. And I got a call from my mother-in-law and said, “You know, Reagan is screaming at the top of her lungs. It appears that her arm is popped out of socket and I don't know what to do.” I mean she had our pediatrician number and all that kind of stuff. So I was like, “OK time out.” I called the pediatrician, she tells us where to go. We go to an ER basically, or an urgent care. I meet my mother-in-law there with Reagan, and pretty soon they start asking me questions about my mother-in-law and my mother-in-law's care, and I was like, “Oh my gosh.” My mother-in-law is like one of the best people on the planet. She adores everybody, but especially her grandbabies. And so that sort of freaks me out. And at the time I didn't think anything of it other than her elbow popped out, you know, like I didn't know that was a symptom of something to come later. But that was the 1st thing, that really was. And then to be questioned about it was concerning. And eventually I mean they put her in a sling and she was in a sling for six weeks and we moved on. But having my mother-in-law questioned was scary. And then as things progress and you think about all the other things that my girls have been through, that was really the first sign.

00:06:42 Jill (Standing Up to POTS): Wow, what a nightmare and your poor mother-in-law!

00:06:45 Brooke (Guest): Oh, and she's precious. Everybody loves her.

00:06:48 Jill (Standing Up to POTS): Well, I can't imagine the stress! My my my. Anyway, OK, so what then what? What happened that it developed into something that you recognized as a bigger problem?

00:06:59 Brooke (Guest): I'm the queen of outsourcing. So one of my friends at church is an organizer and so I had her come and help me organize the garage and organize some things 'cause I was working a lot, taking care of little kids, and we realized I have an entire section of my garage called medical braces. Multiple sets of crutches, all different sizes of the wrist, ankle, and I wasn't a sporty girl growing up. I was a dancer, and my girls are very athletic and very into sports. So I just assumed either they were very klutzy, or they were just so involved and so athletic that these things were happening to them. And when my friend came over, and not just her coming over and really organizing all of our medical equipment, but people started making comments at school, at church, out in the community, like oh, you're on, you know, one of those roller scooters again. Delaney spent a year and a half on a roller scooter. So, you know, [people would say] “You're on crutches again. What did you do? Your wrist is broken, your finger is broken.” It became a theme in our family that people sort of knew us for. And in hindsight, now I can say that when you go to a wrist specialist or you go to an ankle specialist, they often don't ask about the entire skeletal system and all the different things that may have been wrong with you in the past. They're just treating that one injury. So in hindsight, nobody really looked at the whole picture and said, “Hey, your girls have joint and connective tissue challenges.” So that was really the first part of the Ehlers Danlos. But then that led into POTS. So, do you want to ask me about that part? [Laughs]

00:08:42 Jill (Standing Up to POTS): I do, but first I just want to comment on the funny - I have absolutely never heard of anyone reach some sort of conclusion by cleaning their garage. That's amazing. [Laughs] So, so, yeah, how did this eventually get discovered to be Ehlers Danlos syndrome and POTS?

00:09:03 Brooke (Guest): OK, so we switched pediatricians because my oldest daughter just kept being sick, kept being sick, and I just couldn't figure out what's going on. And she was playing competitive volleyball and she was the score keeper for the other teams whenever it was their time - turns team to sit out. And so she would play volleyball, she would be awesome then, she'd go sit down to be the scorekeeper and her heart would start racing and her legs would start bouncing up and down and all of a sudden she start to feel faint. And I'm like, “You were just playing competitive volleyball, like, what is going on?” [Laughs] And so, we switched pediatricians trying to figure that out. Then we went to a cardiologist. He told us that lots of teenage girls have this and the vagal nerve is hyperactive at that age and so we were like, “OK, what do we do?” [The cardiologist said] “Lots of Gatorade.” And then fast forward a little bit, she started having what we thought were panic attack and couldn't get out of the car, couldn't get out of bed. And we again go to the doctor and they're telling us that she's got anxiety, and so we get in with a phenomenal counselor to just do regular counseling. And again, it's a teenage girl, right? Who doesn't have anxiety as a teenage girl? And I'm like, OK. But the counselor was phenomenal and she kept telling me I don't think she has anxiety - generalized anxiety - I think this is a physical phenomenon. And she's like, “Go ask your pediatrician about PANDAS.” [Transcriber’s note: In Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), children start exhibiting unusual behavior or personality changes after a streptococcal infection.] And then I'd come back the next week, “Go ask her pediatrician about...” I mean, she always had this list, but she was not familiar with POTS, nor was I, so we didn't ask those questions. But I had a hunch, like, we weren't on the right path yet, and I didn't really know how to get there. Fast forward, Reagan landed her sophomore year in the hospital, and because of a bleeding disorder that was related to her Ehlers Danlos actually, and the contraction of blood vessels and things that weren't functioning properly. And that was in September, October. January of that year, I finally called her pediatrician and was like, “I need help, something is really wrong.” Everybody kept telling me this one weird thing, or that one weird thing, weren't that weird, but in my brain, like when you put them all together that didn't make sense. We hadn't figured it out yet. And so, she went back to the very first day that she had seen my girls and just looked through their entire chart while I was on the phone with her and it was like a light bulb went off in her head. She's a phenomenal physician. And she told me to go grab a pen and piece of paper and that I was going to need to write down the name of Dr. Golder Wilson, he's a geneticist, and that Reagan almost certainly had Ehlers Danlos syndrome, and that Delaney probably had it as well. And that Reagan probably had something called POTS or a form of dysautonomia. And those were all words I had never heard of.

00:12:07 Jill (Standing Up to POTS): Wow. So at that point what were their worst symptoms and how much did it affect their schooling or their social lives? Was it a big deal day to day?

00:12:17 Brooke (Guest): Let's start with Delaney, who doesn't have POTS, just her Ehlers Danlos syndrome. Like I had mentioned earlier, she had played competitive soccer, softball, volleyball team. Her skeletal and Ehlers Danlos symptoms had required her to really stop her sports because she wasn't able to be consistent. She would always have an injury and not be able to participate. She's just such a brave girl and she just switched on a dime and became extremely involved in drama and theater and worked both on stage and behind the stage. And that's been a really big new passion for her. So I was proud of how she made that transition. But that also involves, you know teenagers, making brand new friends and friends groups and kind of grieving the loss of what you could do before. Reagan’s situation was a lot harder in that she was missing a lot of school. She had a ton of absences, which meant having a lot of teachers to the house, self-studying, trying to get caught up on schoolwork over holiday breaks and in the summer. That was really how it was impacting her. And as far as [Reagan’s] symptoms, the worst one was fatigue - chronic fatigue - and we didn't have any - she didn't have any control over it at that time. But also heart palpitations, and when she was fatigued, she would have brain fog. So she really struggled with just thinking clearly, which makes studying as a student and keeping up with schoolwork pretty hard. And also keeping up with friends and family. You miss out on a lot when you're in that state.

00:13:53 Jill (Standing Up to POTS): So, is this a good time to get into what happened with her school that was so, in my mind, cruel at a time when it sounds like she had a really good grade point average despite all this?

00:14:10 Brooke (Guest): Yeah Jill. I mean, I'm happy to go there. I don't think there's ever a good time for me to talk about it 'cause it's just heart crushing for me. I mean I try, I've tried really hard to move past it and be forgiving, and I think that I'm getting there, but I will say it was really hard. So talking about it is hard, but I won't lie. So that was sophomore year when she got diagnosed and the school tried to work with us sophomore, junior year through her absences and she would have a flare and she would be gone. And then she would get better and be at school. So you just sort of never knew whether the faucet was going to be turned on or off, but she made it to school most of the time, but she missed extensive periods as well. Right before her senior year, she was doing really well. We had gotten in with an electrocardiologist and he got her medicines right and she was thriving - went to summer camp, was able to go on the senior trip to Colorado. It was just - we were so pumped. We were like, “Yes, like, we're in a good spot.” And she developed a stomach ulcer. And so the medicines that she'd been taking that had been keeping her POTS symptoms under control, she wasn't able to take 'cause they were impacting this ulcer. So we had to take six weeks off of the POTS med to give her stomach a chance to heal, which caused a flare, which meant she was missing school, and in October of her senior year they called us and said we think she's going to need to take a few classes online instead of taking them at school. That was a huge blow to her mental health because being with her friends at school was really important. But we were just determined to try and salvage that senior year and all the fun things that senior year has to hold. And I don't think I mentioned this before, but she'd been at the same school since 1st grade. So, this was not just her school, but it was her community, it was her religious community. So we were trying to salvage those last months of her senior year.

00:16:02 Jill (Standing Up to POTS): And you have been a big part of this school too, right? You had been a room mother and you...

00:16:06 Brooke (Guest): Yeah, and we loved it. Yeah, absolutely. I mean we go all in when we get into something. I mean the girls had played sports. Yeah, we were all in, you know, it was part of our community. So she was doing classes online. A lot of the work she'd done over the summer and in the first part of the year had been lost because she was not taking classes at the school anymore. She's now taking them online. And then? In December, at the end of December, right before Christmas holidays, they called and said they wanted to meet with us. And I just truly couldn't bear to hear that they were going to kick her out right before the Christmas holidays because I just couldn't imagine what that was going to do to her over the break. So, I said, “Can we come in first of January, talk about it then?” Well, that was not a good idea in hindsight, because the headmaster got the flu and so then she couldn't come be around him. So we were not able to meet with the school to know what they were going to ask of us until January, I think 26 or 28, at which point there was only 64 days left of school - of her senior year. And they indeed asked us to leave. I was in complete shock because no other private school can take you at that point 'cause you're not going to get enough credits from them, and to register and get into our public school and then get enough credits - it was brutal. And thank goodness at our church, I knew the head of the school board and a lot of the school board members, and they knew our situation and they really worked to help Reagan get homeschooled because otherwise she was going to be delayed an entire year for college. She'd been accepted to Texas A&M. She had an exceptional grade point average and a ACT score. She was ready for college. We just had to get the health thing under way and get her out, get her out of high school.

00:18:01 Jill (Standing Up to POTS): So they were not willing to consider that she was doing great despite a big health challenge? They said, “No, that's it, you're kicked out of here?”

00:18:09 Brooke (Guest): Well, I think what happened Jill was they kept discussing that they were a college preparatory school and she wasn't upholding those standards, or she hadn't met those requirements. And quite frankly for me, she wasn't given the chance to because she'd been asked in October to do this homeschool thing, and it was very difficult. I will just say everybody had a little bit different expectation. We had different expectations about what should have happened in the situation.

00:18:37 Jill (Standing Up to POTS): So then what happened to her academically and socially? What did this do to everybody?

00:18:42 Brooke (Guest): I think a lot of her peers were confused about why she was asked to leave, or didn't even know that she was asked to leave. And you know, Jill, she'd spent so much time at home and away from her peers because of her illness that it was - it's hard to reconnect at that point. So she just set her mind forward on how to go get engaged with the community at college. I mean, the happy ending of this story was Coppell graduated her, got her out of there with their home school program, and she went on to Texas A&M and she's in a sorority. She's a senior leader of a big philanthropi­cal organization, is a junior in public health, and she's killing it. So, it can be done, it just was a real painful process to get there.

00:19:28 Jill (Standing Up to POTS): Oh good, it's so good to hear that things turned out OK for her. Wow. And are her symptoms better and more under control now?

00:19:54 Brooke (Guest): Absolutely. But I also think - you know, I've been interviewing a lot of young women who are in Reagan’s similar situation, and one of the things that happens over time is you start to learn, and again, I don't have dysautonomia, so I'm talking about what others have told me, not my personal experience. But, you know, they start to learn to listen to their bodies and know when it's time to stop so they don't overdo it and then end up in a flare. They're all talking to me about learning how to pace, knowing to keep your snacks handy, to make sure you're hydrated - all those things. And when you're a teenager and you're just getting diagnosed, I mean, those things take time to really learn and grow into your own person, whether you have an illness or not. But in particular, if you have a disorder like dysautonomia, you have to become a much better listener to your body, I think.

00:20:47 Jill (Standing Up to POTS): So that ties into the story that I'd heard you mention, I think you called it the ER debacle?

00:20:53 Brooke (Guest): Oh my gosh, yeah.

00:20:54 Jill (Standing Up to POTS): Luckily we knew what she needed. Do you want to tell us about that?

00:20:58 Brooke (Guest): Yeah. So, maybe just to say how well she's doing. She worked for 10 weeks at a summer camp she's been going to since 4th grade. This was her second summer to work there. And imagine, you know, you're working at a summer camp. You're up early, you’re working all day in the heat, you're up late, you're expending a lot of energy. And I don't know what week she was on, but midway or towards the end she started to feel POTSy, is what calls it - “I'm feeling POTSy.” And she went to the camp directors who know all about her disorder and have been very accommodating and said, “I really need to go and get an IV,” and they said, “No problem. Go get an IV.” So she goes to an urgent care, which is what she does when she's at home or when she's at college. There's urgent cares she goes to that know her and her situation. And she shows up and they were like, “We have no idea what you're talking about. We've never heard of dysautonomia. We don't know what POTS is,” and I'm paraphrasing her story, right? This is kind of what I heard second hand. And she's starting to be like, really, you know, you start to be unwell and you start to not be able to think clearly and basically, they told her she needed to go to the ER. So she goes to the ER. It's a smaller town, not like Dallas TX where we have lots of resources and hospitals here and they, too, had not heard of dysautonomia and POTS and insisted on running - I don't even know what all blood tests and echo, MRI, what they did, but it was an entire battery of tests before they would agree to give her her IV and she was like I was so invested at that point Mom I had to. I had to have it. Well, lo and behold, she got it. Then she felt better and was able to get back out there. But, I still haven't gotten my medical bill yet, and once I do, and I know who those providers are, I do call and not be ugly by any means, but just provide some information to them about this disorder and point them hopefully in the right direction if they, if they're willing to listen.

00:23:03 Jill (Standing Up to POTS): Right, 'cause that's a good point, 'cause it's not just that she had to spend hours there to get unnecessary tests, but you might be stuck with a huge bill. And one that a lot of people thinking ahead about would not be able to absorb. They'd say forget about it, I'm just going to go suffer.

00:23:23 Brooke (Guest): Yes, we're blessed with that that we have really good insurance, and she knows that right now. Yeah, I can't, I can't stop to think about if she couldn't have gotten the IV. I would have had to probably go up there, I'm going to guess. I don't know. I don't know what would have happened.

00:23:35 Jill (Standing Up to POTS): And this kind of comes back to the power of awareness. If there had been one person at that ER who knew what POTS was, this could have been so simple and so easy and so cheap. And I know that you have fought very hard to raise awareness and so can you talk a little bit about your journey as far as getting more and more involved. Like I know that now you are the President of Dysautonomia Support Network, but I don't think you started out with it right? Like...

00:24:05 Brooke (Guest): No! [Laughs] I definitely didn’t start out that way! Definitely not. Uhm, well when your kid gets a diagnosis with words that you've never heard of before, and I guess I'm going to go back to maybe it is like, when you're an executive coach, you're gonna create a project plan and you're gonna [Laughs] figure it out, right? So, Mama Bear got a little obsessive and researched every dysautonomia organization out there, and which, by the way, there are many, and there are so many great ones. So, plug to many, many people who are doing a lot of great work. One of the ones that I ran across was Dysautonomia Support Network (DSN). And one of the times Reagan was getting a procedure in the hospital, I posted on the DSN Facebook group. I was like, “My daughter is getting this procedure and it was supposed to happen at 6:30. It's now noon. She's crashing. She can't eat, she can't have liquids, she's sobbing. What am I to do? And will you all pray for me?” And all the moms are on this thing going, “Never get a procedure without asking for an IV first.” And then days later, we're checking back in and saying, “How's your daughter? How did it go?” And so my first entry into volunteering was because people were helping me, and I was like I need to help other people. One, I need to get informed. And then once I do, I want to help other people. And so, actually our founder of DSN, she was a patient, a medical provider, and a caregiver. Was looking for volunteers and I applied and I was the executive coach of our founder for a while. And so I learned all about DSN by working with her and thinking about all the volunteers and the leadership team and how to organize things. And then I joined the board of DSN. And then we did a trip to Washington, D.C. where we were part of the Rare organization and they taught us about dysautonomia and taught us about the different laws and things that are important to our patient community. So, I met with senators and representatives when I was in D.C. We just talked about those items and talked about our personal experience because, really, your personal story is your best story, probably. And then when our founder stepped down to do other things, the board asked if I would be willing to come in and more like in an interim way. I don't think I'm going to be the President long term of DSN, but definitely with my business background and my executive coaching background, I said yes, I’d do an interim 2, 3, 4 years – whatever was needed to help us move forward and with our strategy. And so yeah, I've done a big event in Dallas with my family, and when I say I did it, really my entire family, my entire neighborhood, my entire church, helped throw this event. And it was an awareness walk and family fun day. And several 100 people, maybe 3 or 400 people, were there. It was so much fun. One of my favorite things to do though, Jill, is like last week I got 2 phone calls from families that are local that people had gotten my name from somebody else. And they’d just started their journey and were like, “What do we do?” And I pray that people don't have it, don't find it, but if they do, find somebody else who does.

00:27:31 Jill (Standing Up to POTS): Right, that's great advice. So do you want to talk a little bit about what is available at Dysautonomia Support Network, if people have not checked it out yet?

00:27:43 Brooke (Guest): I first wanted just to say that we are primarily patients or caregivers or supporters. Our organization is all volunteer and it's patients serving patients or people who are involved with patients serving patients, which I think is important to know because that's really the heart of who we are. We are a 501(c)(3) [nonprofit corporation], which is important for people to know just so that they know that we're vetted and we're a legitimate not-for-profit. Our primary mission is to provide a community so we're very community oriented. And within that community, we're trying to empower and support anyone affected by dysautonomia to live their best life. The best ways to know what, what all we have available is our website is an amazing resource for content - different types of dysautonomia, how to get diagnosed, medicines that you might take. We have a medical provider list that our members submit providers so that you can find providers in your area. But then on the other side of the house is really our community groups, and that is a real key part of who we are. So, every region of the United States has a community group on Facebook. We have a global community group. We have special interest groups for college students, for caregivers, for people in the military who have unique needs 'cause they're moving around the country a lot. And then we also have some groups that are just for fun, so you can meet up with people who have common interests. So, a wellness group that involves cooking and yoga and exercise and mindfulness. We have a gamers club, a creatives group. So, for people who do - you could craft you might be a phenomenal artist, and it kind of really runs the gamut of people coming together just to have fun, really. Support each other.

00:29:40 Jill (Standing Up to POTS): Yeah, I think Dysautonomia Support Network really does a good job of bringing people together in a positive way, like you say, around the fun things, not only about helping each other and exchanging information about illness, but about kind of a thriving. And I always find it has great people, great spirits, some fun, and yeah, I think it's really valuable.

00:30:05 Brooke (Guest): I interviewed one of our members today and he basically said DSN has become my online family and that just ah like made my heart so happy.

00:30:16 Jill (Standing Up to POTS): And I love how the community like like you - you look forward to helping the next person and what a beautiful thing that is. But that brings me to my next question, which is have any silver linings come out of this for your kids? And then same question for you.

00:30:25 Brooke (Guest): Well, I definitely think both of them have been influenced in their professional choices, like what they're studying in school, by wanting to help others. I think both of my children have matured immensely through this process and have become amazing self-advocates. Knowing that my daughter showed up at an ER and managed this whole process - I mean, that's just as an example, but I'm not worried about how they're going to be out in the world. Their ability to talk in medical terms and explain things to other people is amazing. Empathy, wow, you've been through something hard, your empathy factor either goes way up or way down, right? You never know. I mean, I had never heard of the term invisible illness. Like, what is that? And so yeah, empathy for other people and being able to look at others and know that you have no idea what's going on in their life, even if they look fantastic or their Facebook pictures look great. You never know. So I would have to say I wouldn't wish this on somebody. But we have a ton of silver linings and I mentioned the event we threw in Dallas and watching all these people that we’re friends with and so many friends from church and neighbors and all these people come out and walk. I mean, I was in tears, just to realize how beautiful people are, the goodness in people.

00:31:53 Jill (Standing Up to POTS): I wonder if there's any things that you do as an executive coach that kind of come naturally to you, but that would be good for other people to know. So, I think lots of people don't feel like they have their whole community supporting them, or that they would have a lot of people who would show up at any event that they would throw. So I don't know, do you have any tips or strategies or any things that are kind of like your go to strategies when you say you know you were the mama bear who decided to figure this out and make a project board? Is there any part of that that you think helped that you would recommend to others?

00:32:35 Brooke (Guest): When you first asked that question, I thought one thing and then I thought of another. So, I'm going to answer twice. We have binders of information of the girls’ medical information. And so every time I come home I, like, categorize it and I categorize it by doctor type. So I have all the results at my fingertips when I need them. That's really important. And we use Backpack Health, which is an app to share data with doctors. We collect all our data. My girls are off at college now so all of their providers that they've ever had, their phone numbers, their results are all in there, so we can both access it. If they can't get me, they know where to go. Being really diligent about keeping your medical records when you have a disorder and you're going to so many specialists, I think, is really important and may be one of those executive coach things that helped me. I never went into a doctor's appointment without the night before writing down all my questions. And then sometimes I was still writing them down as I'm in the waiting room thinking of new things. And then making sure I didn't leave without asking them all because you only get a limited amount of time, and sometimes they're ready to rush you out, but that's your one chance. You waited months to get in with them. So just being prepared ahead of time and taking notes when you're in there, so when you leave, you don't forget. But then you asked me about how to get other people involved and Facebook has been a really good tool for me. I had to get my girls’ permission, and even for this. I want to make sure, like, I'm not oversharing somebody else’s story, that it's their story to share. But once they realized that this had really become such a passion of mine to make sure other young women, and really, men and women of all ages, that live in small towns or don't have access to the things that we have, growing awareness, I think that they were like, “Yeah, I think it's important that we as a family share stories.” So I think letting people know what you're going through, asking for help when you need it, and just doing some small things like our coffee shop will give 10% to DSN if you invite people to come meet you there. Well, invite your two best friends. You know, it doesn't have to be a giant thing. One of the things that a lot of members do is they do a Facebook fundraiser for DSN. And that's just a way to - even if somebody raises $1.00, it doesn't matter about the money. All of their friends and family that are on their Facebook group hear their story and that they have dysautonomia. So people might surprise you when you start to share what's really going on and ask them to come alongside. That would be my tip.

00:35:19 Jill (Standing Up to POTS): That's great, so do you think that your daughters are open about this now with their current groups of friends? Or is it a big deal in their lives? How much does it affect their daily life and how much would their college friends know that something is going on with them?

00:35:37 Brooke (Guest): That is a really good question, Jill. I definitely think when Reagan was in high school, everybody knew something was wrong 'cause she was missing school all the time. Reagan uses a disability placard, so anybody that gets in her car is going to see there’s something, right? It's like the visible of the invisible. Both of the girls had a surgery over the holidays. One had a cadaver tendon put in her knee. The other had ankle surgery. So like I think their friends know because there's things that go on in their life that are unique or different. I don't think it's something they sit around and talk about all day long.

00:36:13 Jill (Standing Up to POTS): That's great.

00:36:14 Brooke (Guest): But I do think their friends know, so I don't know. I think it's probably that healthy balance, right? I don't sit around and talk about it all day long with my friends either. When I'm in my community, I do, or when it's awareness month I do, or my birthday I ask for donations, but it's not like every time they see me, 'cause I think if every time my friend saw me all I talked about was DSN and dysautonomia awareness, they would like be like, “Peace out!” right?

00:36:39 Jill (Standing Up to POTS): [Laughs] Right! Right, and I think that healthy balance is valuable and I think some of us struggle with that a little bit because if you don't share enough, then when it does affect you then it's like, “Oh what's going on?” And you know it kind of spirals into this thing of why is she acting weird, why isn’t she here, why did she cancel? But then oversharing can be an issue too.

00:37:01 Brooke (Guest): Oh, that's a really good point, Jill. That's something I try and tell a lot of people. So, our family used to be, “You make a commitment, you keep your commitment no matter what,” right? And then dysautonomia happened and we had to really explain to our entire family, extended family, extended extended family, friends - we plan to be there. We really want to be there, depending on how we're feeling that day. And you know, people are just going to have to accept us like that or not. But that's how we roll. And used to, when we would go on trips, I would plan out every day where we're going to be every hotel we are going to be in. And now I'm like, well, we're going to go on this vacation, and I'm not sure where we're going to stay when we get there because we might need to stay here two or three days 'cause you never know. And I think maybe that's a place that our family has grown too, right? Like, we've had to just give up on some of this structure and become a little more flexible. And some friends are probably more OK with that than others, but that's who we are now, and that's OK with us.

00:38:14 Jill (Standing Up to POTS): Do you think your family has changed in any other ways?

00:38:16 Brooke (Guest): We’re a lot closer, yeah. I mean, we were - we've always been a very close family, but anytime any family or any friend group goes through trials and tribulations, you know, you can go one or the other, right? It's going to break you or you're going to be tight. I think we're really tight.

00:38:34 Jill (Standing Up to POTS): That's great. I just have a couple more questions.

00:38:38 Brooke (Guest): OK.

00:38:40 Jill (Standing Up to POTS): Is there anything that you know now about life with chronic illness that you wish you had known earlier?

00:38:49 Brooke (Guest): Such a good question. Maybe I'll go back to the flexibility thing, you know, what I just talked about, that having a strict plan and trying to stick with it is not realistic. And that's OK. Just make sure that you communicate with the people around you, your intention, and then when things change, why.

00:39:14 Jill (Standing Up to POTS): See, I love your attitude, which I think you take for granted because it's just you. But, you know, you're so supportive and you look out for your girls and you are flexible where flexibility helps. And it's kind of no big deal.

00:39:29 Brooke (Guest): Oh I don't know. It was really hard when we were canceling, canceling, canceling plans and, you know, I'm like, “Can't you just get out of bed? Just get out of bed.” [Laughs] “Come along, it's a family thing. You need to be here,” and she would just be like, “I can't.” I won't say it was rosy and we were always happy and cheery and, like, I'm not the best mom on the planet. We had hard times. But, you asked me about the end result, not the middle.

00:39:57 Jill (Standing Up to POTS): [Laughs] OK, well you know it's good to know. I think it's important for people you know when you see a success story to know that there were some real struggles there.

00:40:06 Brooke (Guest): Oh yeah, yeah, real struggles. And even think about my youngest daughter, Delaney, would have to go to school. Her sister wasn't there, everybody asking her, “Where's your sister? What's wrong with your sister?” I mean, she's 14 years old. That’s a lot on a kid and...

00:40:22 Jill (Standing Up to POTS): I just had to ask, was your mother in law really relieved when she learned it was not her fault that the elbow popped out of joint?

00:40:30 Brooke (Guest): I think she knew all along. I mean, my child was crawling to her. She wasn't even touching her [Laughs] People always ask, like, “Well, why is it important to get a diagnosis when there's not a cure?” And for me, getting a diagnosis that I wasn't crazy, they weren't crazy, there were other people who had it that you could talk to who would get you. And while you can't fix it, there's no cure, you can treat the symptoms. And so there was a lot of power for me that came through a diagnosis.

00:41:06 Jill (Standing Up to POTS): Yeah, I agree with that. Well, I love your positive spirit and your strength around all this. Is there anything that you wish more people knew about POTS, Ehlers Danlos, and all their related comorbidities?

00:41:23 Brooke (Guest): I think the thing that's been the most surprising to me is how not rare this is. I have always considered myself to be pretty well educated, well read, invested, and interested in other people's lives. So, I was completely caught off guard that this was something I'd never even heard of. And then the more you learn about it, and you know that it's impacting so many people. And now, and now even with long haul COVID, there's being more cases of dysautonomia related to the COVID situation - the COVID illness - I think that's the part that really took me by surprise. I had a phone call from two different people last week that lived in my community. And I live in a 35,000 people community. It's not that rare.

00:42:13 Jill (Standing Up to POTS): I would love to get an expert on who has theories about why, because yeah, it's not that rare and it seems like it's getting less rare all the time. Well, you’re a mom who I think, seems like you've kind of come through this difficult thing with a lot of strength and grace and positivity, and I speak to a lot of people who aren't there yet, and they're having a really tough time with this. And do you have any advice? Any insights on what has given you the strength? Anything that you would say about coming through this and coming out on the other side still able to smile like you are doing?

00:42:58 Brooke (Guest): I'm not one to force happiness. And so what I mean by that is if you're in a sad place, accept that you're in a sad place. In my opinion, the more you try and push it down or ignore those hard sad feelings, they're not going to go away. They're there. You have to feel them. I go to a counselor, so I'm happy to say getting mental health is really important if you need it, and I needed it, so I got it, which was great. Definitely becoming a part of a community, whether it's DSN or a local community, and finding other people who get you is invaluable to staying sane through all this, especially if you're going through a hard time. There's grief support groups out there that I think could be helpful. Also, one of the reasons we have some of our fun clubs is because having a hobby, having something you do to take your mind off of it - if it's reading a book, watching a movie, hugging on your pets. I mean, what are some things you can do to take a break from whatever it is you're experiencing that's hard and painful and really trying to cultivate a few friends that you can always be there for them and that will be there for you. So, I mean my friends have sat and listened to me cry for hours about all this stuff. So, it's - I don't want to say it’s rosy all the time. I am a positive person, I do feel a lot of strength and what we're doing now, but it wasn't always like this.

00:44:31 Jill (Standing Up to POTS): That’s so good to know. Well, Brooke, thank you for sharing your story and your wisdom with us. And thank you so much for all the work that you do to raise awareness and to advocate and to help improve quality of life. We really appreciate everything that you do, and we send a shout out to your girls wishing them well. And hey, listeners, remember this is not medical advice. Consult your healthcare team about what's right for you, but please consider subscribing because it helps us get found by people just like you. Thank you for tuning in. Remember that you're not alone. And please join us again soon.

00:45:10 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 in. 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: To request a copy of this transcript or the transcript for any other episode of the POTScast, please contact volunteer@standinguptopots.org]