E208: Laura and Sharon published a book about Dysautonomia!

Episode 208 June 04, 2024 00:40:49
E208: Laura and Sharon published a book about Dysautonomia!
The POTScast
E208: Laura and Sharon published a book about Dysautonomia!

Jun 04 2024 | 00:40:49


Hosted By

Cathy Pederson Jill Brook

Show Notes

Laura and Sharon became great friends while they supported one another through dysautonomia and related conditions.  Between Laura's writing experience, Sharon's nursing career, and their joint ability to find the humor in every situation, they decided to help others by writing The Dysautonomia Diary:  Essays and Tips for Enjoying Life Despite Chronic Illness.  Their book has a foreword by Dr. Blair Grubb and is available here on Amazon

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Episode Transcript

Jill Brook: [00:00:00] Hello fellow POTS patients and magnificent people who care about POTS patients. I'm Jill Brook, your horizontal host. And today we have an episode of the POTS Diaries with two women who are authors and they have published a book called The Dysautonomia Diary, Essays and Tips for Enjoying Life Despite Chronic Illness. Our guests today are Laura Ruszczyc and Sharon Roloff. Thank you so much for being here today, ladies. Laura Ruszczyc: Thank you, our pleasure. Sharon Roloff: Absolutely. Jill Brook: So we always like to start by getting to know our guests a little bit. And I thought that it would be fun since you two have written a book together and you're partners, I thought it could be fun if you each introduced one another a little bit. So maybe Sharon, you could introduce Laura to us and then vice versa. Sharon Roloff: This is my colleague and co author, Laura Seil Ruszczyc. She and I were introduced by my brother. I grew up in Hamburg, New York. Laura lives in Hamburg and I now [00:01:00] live in Cleveland. And my brother one day murmured, you know, there are two of you. And each of us had a, a list of oddly enumerated symptoms that would wane and wax and not make any sense. So he said, there are two of you. And so he introduced us and we sat on their couch and Laura brought her daughter, Sarah with her. She's now all grown and fully employed and very, very mature young lady. And we spoke and at length about the strangeness of trying to pull all these pieces together. And Laura my background is that of a nurse and an educator. My, my professional career was in pediatric nursing. And then I got talked into becoming a nurse midwife. So, that career came crashing down when I made my last [00:02:00] payment of my graduate student loan. So, it took me a while but I'm glad I met Laura because we can reminisce, we can talk about social security disability, we can talk about giving up careers, we can talk about having to let go of colleagues, and saying goodbye in a very abrupt way. Laura is an educator and counselor. She worked in a school that I'm very familiar with. It's where, it's in the town I grew up in. And her responsibilities included helping children who had troubles in school and just needed time to talk and sort out and go on with learning. And Laura did that very skillfully. And they were very sad when she needed to resign. Jill Brook: Okay, and Laura, could you introduce us a little bit to Sharon? Laura Ruszczyc: This is Sharon Roloff and she is my co author of our book, Dysautonomia Diary. Sharon fell into my life when I first got ill and by mutual people that we knew [00:03:00] and she's a serious fairy godmother to me and everybody else who knows her. Sharon's a dog mom. She's a wife. She's a grandma. She's wicked smart. She knows all the medical stuff. She's my Ethel to my Lucy, and I love Lucy. We just have fantastic adventures together. We clicked immediately in the year 2000, and 11. We clicked like right away when we met each other and we've been dear, dear friends and I'm so fortunate to have her in my life. Jill Brook: Oh, that's so lovely. So, before we dive into your book, can we dive into your backstory? Like, I know Sharon, you had mentioned a little bit about your past life and your job and having to leave that. Do you mind telling us a little bit more about your POTS? Like, I like to call it Flavor of POTS. It's almost like we all get a slightly different flavor of ice cream. Sharon Roloff: Right, right. Jill Brook: What was yours like? Sharon Roloff: My immunologist traced my story back to when I was [00:04:00] seven years old, actually, and I've had it for 60+ years. And it took until 2010 maybe to get a name to all of this chaos. I had Measles Encephalitis when I was 7. I had the Sabin Vaccine and the Salk Vaccine when I was 5 and 6. But everybody in my life had Measles, Mumps, Rubella, the whole shot. And what it what the virus can do is damage, with inflammation, systems in your body, and in me, it damaged my autonomic system and my immune system. So, fast forward, I was a kid who was always sick in school, who had the runny nose, the strep throat, who had who fainted in church, who fainted at parades, who passed out when standing too long I would have tummy trouble and when things were stressful either good stress or bad stress, like [00:05:00] test taking or a celebration I would be vomiting and so, it, I, or when I would have like, I, in our family, we got to ride a bike when we were seven years old, and I couldn't learn to ride a bike. I sat on the pool at the high school for years in my little bathing suit, not even getting wet. So, when I got to camp, the counselor was really annoyed with me and, you know, it's enforced getting in the pool by picking me up and dropping me in. And at which point I had, it's called Reflex Sympathetic Dystrophy. It's what happens to paralytics who have a sudden reaction in their autonomic system that is spontaneous. So there I was at the bottom of the pool and my friend helped me get out and covered me with a sun heated towel. So along the way I've been nurtured by loving, caring, generous friends and I've chosen to forgive [00:06:00] the people who are not so generous. Because if I don't forgive, then it festers and then it makes a wound. Like, when I got my tetanus shot to go to camp, I went by myself, got my camp papers filled out, went downstairs, smelled the alcohol in the hallway, and threw up and passed out in the phone booth because I realized I wasn't feeling well. So my mother came in and there was vomit all over the phone booth and she called these episodes acting up. I was acting up again. Here I was. She had to come and get a cab because I was acting up. But really, I was having syncope because the smell of alcohol and the trauma of vaccination and whatnot. Well, I hated camp. I hated the bugs, the heat, the itchy, twitchy, I hated camp, so I never went back. But in high school I would faint, with especially periods, because you lose that fluid. I would have trouble standing up, and would, like Laura, sit on the floor, put my [00:07:00] legs up. And, well, that was un-lady like, so you had to sit in a chair. So, I made it through my baccalaureate. My first master's degree and my interest was in the wellness of children. My first job assignment was Pediatric ICU. And I thought there has to be a better way of helping people have healthy children. And I guess it has always been my passion. So I became a nurse practitioner and worked with mothers and babies and then I had three of my own and I went back to do mother baby nursing with a friend of my parenting group. I was recruited at THOB, and at CASE, and then a colleague of mine said, come on and become a midwife. And I'm like, what? Are you nuts? And she goes, you already know the OB part because that's what you're teaching. You know the baby part. So I went back to graduate school with three jobs, three kids, a new home, but I did it because I had a cadre of colleagues.[00:08:00] In the OR, when you had to stand and not touch anything that's blue, I would be against the wall so I wouldn't faint out and destroy the field. But I think you develop a rich sense of humor and forgiveness because these things happen and you become more aware of the fainting person. Like we were at a wedding and I saw this young lady doing the weave back and forth. It's not the side to side, it was the front, the back. And I thought she is going down and this is the wedding ceremony. And I thought, I splinted sprinted across the aisle and grabbed onto her. Two other people helped me get her out to the limousine that was meant for the bride and groom. I said, can you please get her in this cold car? 'Cause it was a pretty hot August day. And sure enough, but nobody put it together. Nobody put it together and because it's a, it's a 12 minute visit, it's a sound bite, it might be your tummy, it might be your [00:09:00] rash, it might be food intolerance, it might be fainting, it could be any of our systems, so, I forgive the physicians I've seen, they've done their part with what they knew at the time, and I think what propelled Laura and I was, at the time I got sick, and we had to leave midwifery, there was nothing in the press for lay people. Nothing. Zero. And even professionally, I was looking in the journals and doing med searches and stuff, there was very little agreement among the medical community. What is this? What happened? I've been told by physicians, well, if your autonomic system is damaged, you'd be dead. And I'd be like, I'm right here. I'm not dead. What do you mean? And so that's my story. Jill Brook: Wow, that sounds really tough. Okay, I have a bunch of things I want to follow up and ask, but first I guess I want to find out, so Laura, did you have something similar, a lifelong thing, or what was your backstory with dysautonomia? Laura Ruszczyc: I had a [00:10:00] career as a writer and then as a counselor for 23 years and my last year as an elementary school counselor I had a string of infections and then the flu and a month of like the flu and then migraines. The day after Christmas, I woke up and I couldn't get off the couch and that was actually the last day I took a bath because I was getting ready for the doctor because I got an appointment and I couldn't get out of the tub because I was passed out. So that was my first experience with IVs and I went back to work and tried to work and it was pretty unsuccessful. I met Sharon a few months later and she hooked me up with her neurologist in Cleveland and I was fortunate for that and then I got diagnosed with, with dysautonomia. They hadn't narrowed it down yet, about eight months later. Maybe about eight months later, but what's interesting is that was 2020, December 2010 when I, when everything spiraled out of control and then I reached, I worked like three weeks in 2011 and then I ended up retiring early in 2012. [00:11:00] But what's interesting now, my Dr. Grubb, my cardiologist, we go back and we've figured out that we think when I was a high school or college senior, I had mononucleosis. And my heart slowed down. Like, I remember two years later, my heart was going kind of slow, and I'd go for runs and feel better the next day. Went through a bunch of tests, and they said I had allergies. Well, probably, Dr. Grubb surmises that the monovirus is the first hit to my autonomic nervous system. And then I lasted, like, 25 years, and then I had this string of infections and then that's what kind of went made everything go crazy. But my heart slowing down was the beginning and Sharon tells the story about she couldn't ride a bike. I knew I was sick because I I had a dive off my bike I I'd love to bike 10 15 miles at a time. Summer 2010, I'm biking and I can only go five miles it's like what's going on in this awful hill by my house I got up and I had a jump off my bike because I couldn't see and I was like near passed out [00:12:00] and that happened a couple times and they chalked it up to dehydration. But I knew that biking, I couldn't bike anymore. That was a clue that something was wrong and then slowly we figured out what it was. And now I bike again. Thank God. It took a long time and I can't bike as far, but at least I can still bike. Sharon Roloff: I think what Laura and I appreciate is that we've been through the spinal taps, we've been through the blood draws, we've been through the arrogance, we've been through, I have had five consecutive worsening tilt table tests in the same autonomic lab in Cleveland and I wouldn't wish it on anybody, but it really is a diagnostic. I affectionately called it Six Flags because it's like a roller coaster. And as a kid I hated amusement parks. Hated them. I didn't understand why people like to drink alcohol. It has a synergistic effect on me. It doesn't taste right. I hated amusement rides, especially [00:13:00] ones that disorient your equilibrium. The only sport I could play was roller skates and ice skates because your foot is in a boot and it laces up your ankle foot support. So a lot of little pieces did come together, but if you tell someone these rare sequences, they're like, Yeah, I think you need to see, and then they fill in the blank of another specialist because we're out of their wheelhouse. And when you understand that it's a systemic injury to an immune system, an autonomic system, then it makes sense. It totally makes sense. Jill Brook: So Sharon, my follow up question to you was going to be going so long, knowing there was something wrong, but not having a name for it. What was that psychologically? You know, if, if your mom said you were, you know, quote unquote acting up, did you think you were acting up? Did you think this was all in your head or what did you think all those years? And what did it mean to you when you finally got a name for it? Sharon Roloff: Total [00:14:00] relief. You can handle, I can handle anything, and anyone can handle anything if it has a name. Tell me what this is. I, I wouldn't imagine this. I wouldn't wish it on anybody. Fainting is the total surrender. And when you come to, it's like, what happened? Where am I? People are screaming at you. You're in an ambulance. I anaphylax as well because of, I have, I have mast cell. And one time, I anaphylaxed on the conveyor belt in the grocery store. Jill Brook: Oh. Sharon Roloff: I woke up to the pharmacist in the grocery store holding my empty EpiPen. And the squad there, and they were like, what are these things on your legs for? And I'm like, what? Food was everywhere. Embarrassing, very. It was my favorite grocery store. So I think once it has a name, once it has an explanation, half the battle. We're sort of like a locked safe. And [00:15:00] people have to listen very carefully with a stethoscope to understand what richness is in that dark container that's locked up. And if, once you crack that code, once you get the right tumblers and the right combination, and the right meds with the right providers, and the right story, they're puzzle fixers. They, they solve problems. They fix, they, they put puzzles together. But if you have the right team. And I, I've seen dozens of physicians and I know who the good ones are. They listen first and then try to put the picture together. Jill Brook: Okay, so, Laura, can you tell us when did you guys decide to write a book, and why, and how, and what does that look like? Laura Ruszczyc: I'm not sure what year we started, but I write. That's what I, I've been a writer since I was maybe 14 years old. I say [00:16:00] it feeds my soul, and it really does. So I started as journaling, writing essays about my experiences, including like the going to the doctor and talking about a sick leave and then going to school the very last day of my work in September knowing I probably wasn't going back to work again. It was my way to get, get the information and the emotions out and also it, it really does feed my soul, writing. So I started doing all these essays and then I asked Sharon to join in. Sharon's the medical person, I'm the writer, so, her job was to find the quotes for the book and to find, and to write tips at the end of our, every chapter has the quotes, and it has information, and then it has questions for the reader. So Sharon was writing the tips, and I was writing most of the essays, and then you wrote some of the essays also, and we put it together, and it honestly took like 10 years, which is crazy. There's, I literally had stacks of essays, and I'm putting them into piles. Sharon Roloff: Me too. Laura Ruszczyc: And then [00:17:00] we're, I'm sending it to her, and we're editing, and, and then one day, maybe a maybe two years ago, I decided this book does not have to be perfect. It's okay if we have a couple errors. So that kind of freed me, because I'm like, I hate having errors in my writing, because I'm kind of a perfectionist on that part. Probably the only place I'm a perfectionist. So, so yeah, so it took about 10 years, and we did it together from a distance, and, and, you know, we're very proud of the book and we're hoping it helps a lot of people who are going through this process. And honestly, I haven't figured it out yet, but I'm hoping we can get it into some doctor's hands because I think medical students need to see the emotional component, the spiritual component, the physical component of dysautonomia. It's, we're just not a flat, you know, surface. There's so many, so many edges to us, or that's not probably the right analogy. There's so much to us that this book kind of looks at some of that stuff and on the goal, it would be fantastic just to get it in as many hands as it can to help the other patients [00:18:00] and also to have doctors get more educated. Sharon Roloff: And to do our piece, we really showed the ugly side as well as the good side. And to re edit it at some point became very painful. It was like ripping the band aid off over and over. And so I reached a point where I had to say, I'm done. This is as I wish it to appear. And if it has a mistake, no one is perfect. And there was, our first message is we believe you. We understand what you've been through. We've had, as I said, all the testing, all the gaslighting, the supportive friends. We've also had people who question our validity. So, we've been through it and we believe you. Jill Brook: Yeah, yeah, can you give an example of any tips that you give along with some of those really tough topics? Like, do you mention any tips around [00:19:00] the world of being gaslighted or losing friends? Because I think that's a really tough topic. Sharon Roloff: I let them go. Because I forgive them because they really don't know what they're saying or doing or the amount of hurt that they've inflicted. And I disengage. Jill Brook: Hmm. Sharon Roloff: Yeah. Yeah. Laura Ruszczyc: So we don't have the energy, any of us with POTS, to, to spend too much time on people that don't believe us and don't care. It hurts tremendously, but we just don't have that energy. I think I've learned that early on. And, and like, I'm a, I'm a counselor, so I I have a tendency to take care of other people and I still do. And I, I'm, I made a decision early on. I can't really take care of the people that are upset because I'm changing because of my my chronic illness. I can't explain it to them. I can't help them with their emotions. They have to take care of themselves. I have plenty of grief and loss from this whole [00:20:00] situation. I can't help those people. So, if they made it through with me and stayed, that's great. Some of them are gone and it's sad, but you, you have to kind of preserve yourself a little bit, your own energy. to get through this. As, as we all say, Sharon and I say, this is not for wimps, this diagnosis. And I'm sure a lot of the listeners here have more than one chronic illness. I have seven now. And, you know, they, they pop up and they're weird and they do weird things and we all have specialists and all that. So to have somebody in our life that doesn't validate us or believe us, it's not worth it. So you just have to let them go. Jill Brook: Yeah. Sharon Roloff: I, I, I'm, I'm understand that Thanksgiving and the holidays are approaching. And I kind of, we made lists of things to do when there's a holiday. One of the things is to bring your own beverage. We all carry around water jugs now. So, make what you like to drink and can drink. So [00:21:00] bring your own bottle. And bring an extra sweater and actually I would suggest like a small blanket. Because restaurants and other people's homes are cold. You can always get warmer, but you can't cool off, like in the summer. So, this time of year in, in our neck of the woods, we need to be sure we're warm enough because we have temperature fluctuations. And my third recommendation is to sit at the kids table because that eliminates the naysayers. They are the most genuine people. They ask straight questions. It may be a little awkward. But they see and then they ask, and I never mind a question from a child. Ever. And my questions to them are, what new thing did you learn this summer? It's amazing. You know, yes, I learned how to swim, ride a bike, I grew frogs in the backyard, whatever it is [00:22:00] that gets the focus away from you and into their lives. You can sit on the floor with kids. You can lean against the wall with kids. You can take your shoes off. Laura Ruszczyc: With I have tips, we have tips for dealing with challenging, really, or changing relationships. Changing relationships. Be honest with each other. In a marriage or relationship, realize there will be shifts. Negotiate, talk, and remember to listen. Understand the healthy partner worries about their partner's health and the issues. Just a side, early on, I encouraged my husband to continue to ski. Yeah, I can't go skiing with you, but please go. I'm okay. And when the kids were younger and I was sick, it's like, still do this stuff. And take some pictures and tell me about it. Yeah. Yeah, I'm sad that I can't do all these things, but I want to know what you guys do. I love this one. Look for angels. Those surprise people. that will come in your life who are already present with you that, that help understand and love. I had this dear teacher right before I retired and she'd stop by my, by my room on her [00:23:00] way wherever to the office and she'd say, How are you? And then she'd say, No, really, how are you? She really cared and it was awesome to be validated and just, so there's angels. Sharon's an angel in my life. We have angels that help us, and those are, you know, look for that. It's super easy to, you know, go into the to the bad stuff that's going on, and we have to deal with the ugly. But try to, try to get yourself out of it and look for the the things that are going okay in your life. Just real quick, I always think of hope, and like, there were times where I had like a tiny sliver of hope. Like, oh my gosh, this is so awful, I feel like I'm drowning, and there's just a tiny sliver. Try to hold on to that sliver until you can, until you can get a bigger sliver of hope, because I think once you give up with your hope, once you lose hope, it's hopeless, I guess. That's not the right word, but yeah, I mean it's awful. I don't want to make the people who are listening to this think that, oh, this is a great thing to have all this stuff, [00:24:00] but okay, this is crappy, but what, what's good today? And one other thing, tip wise, is I decided early on every day to shower and get in, or at least brush my teeth and change my clothes and not sit in my pajamas all day, because early on I couldn't leave the house, so so just, I don't know, just being clean feels good, so try to do that and, you know, do a little bit and go on with your day. Sharon Roloff: I think I want to make a pitch for our families. They often know something is happening before we can even perceive the change. My husband and my kids, even my sons in law, will say, are you okay? And I'll be like, oh yeah, I'm fine. But they knew, they spot the prodrome. And they go, let me take you and set you down. And so I'm very grateful that they have picked up on the nuances and they [00:25:00] understand that timing is important, rest is important and if I say I can't do something, it's not held against me. But, like, Laura's family is the same way. They can tell. So, instantly, that Laura's having a crummy day. And I think that's from that listening part, that hearing you out, like, when something happens, a new diagnosis, or if, like we all have the chronic assortment, or if I call them wobbles when it's not quite an anaphylaxis but it's like two thirds of one, I get angry and I give myself permission to be angry for three days. And I absorb that it happened. I absorb the situation that may have provoked it. I lament, like, darn it! I'm mad that this happened again. And then if I don't give myself permission, that three day and then pulling out of it, it festers. And so I realize that [00:26:00] the human part of me is, it's important to admit, almost savor it and then move forward. So three days is what I need. My family knows it too. Jill Brook: And that was just through trial and error. You figured out that that was your sweet spot. Sharon Roloff: Yes. Yes. And now, and I would be like, and I'd say out loud things like, this isn't fair. I've been doing all my meds, doing the exercise, doing, you know, but it would be another good stress or bad stress that offset the equilibrium and precipitate it. So. Yeah, but both of our families are stellar. They, they get it. Jill Brook: Oh, that's worth so much. Sharon Roloff: Yeah. Yeah. Like if you have to sit in a gymnasium with your legs up the wall, they're not like, what are you doing? What are you doing? But they get it. They totally get it. Jill Brook: So I would love to throw out to either one of you, do you have any other [00:27:00] essays that are favorites or that you think are crowd favorites or are the most helpful to people or that was the hardest to write or the easiest to write? I would just love to maybe if we could like ping pong back and forth between you and maybe just tell us about something. Laura Ruszczyc: My favorite essay is about learning to dance again. And it's, it's called learning, oh, Learning to Dance Again as a Couple and it's a metaphor dancing is getting us back in step as a couple because when you have a chronic illness and you think you're going to. Work 30 years and retire with a state pension and all of a sudden you don't, everything changes. And we still had little kids when this was going on so we had to learn how to renegotiate the roles of our family and how to still enjoy each other. So I wrote that one around our 25th wedding anniversary, and now we're celebrating 35 years, which is crazy. And we just had to, like, learn, like, how [00:28:00] to still be a couple and still enjoy each other, and that's, that's one of my favorite essays. Jill Brook: Wow, I would love to hear any, I don't know, can I just ask, like, what seemed to help you? I know every couple's gonna be totally different, but do you have any memories of what helped you, or what were the tougher parts. Laura Ruszczyc: Well, honestly, I, I was depressed, and I know Sharon knew about this, I got depressed at one point, and we think it was because the medicine was increased, and you're so used to taking medicines, you never think that they're going to affect you, and this medicine just sent me into a spiral. And I was depressed, and my husband and I are sitting in the living room, talking, and he goes, what can I do for you? And I said, just hold my hand and sit upstairs and watch hockey games with me, because I'd be watching hockey games in the family room and he'd be downstairs in his room. Just hang out with me a little bit. And he said, what can you do for me? And I said, nothing. And that scared the hell out of [00:29:00] both of us. I had nothing to give because I was so deep in depression and I was, it was just awful. And he listened to that and he started sitting with me and hanging out. And, and I, you know, I went to counseling obviously and got some help. And I think counseling is a great thing to do to help with all the stressors of chronic illness. And that, that was pivotal, that moment in our marriage where we just had to realize, oh my gosh, she's, she's, she can't do anything right now, I need to step up. And there are times where I have to step up and he, you know, we do it both ways. But that was a real turning point in our relationship. And also I forgot to say, we renewed our vows at 25 years and had a party, and it was right after I got my new pacemaker, so I had a good heartbeat at least, but I was still not feeling fantastic. And it was cool, like, we both decided after 25 years and all this, we still have this chronic stuff, but we still love each other, and we're fortunate, and, and I think one of the best things about having a chronic illness is I value the relationships I have. I have some amazing [00:30:00] friends, including Sharon, who who I never would have met otherwise and, and I value my husband and my three kids and my daughter in law and, you know, I value the relationships that I do have rather than grieve the ones that I've lost. Jill Brook: I'd love to bounce to you, Sharon, if you have any favorite or most helpful essay or some distinctive essay. Sharon Roloff: I think the most ironic story is one of my last day at work. It was my daughter's 16th birthday and when you're on call, you're there for 24 hours. That particular day, I was very thrilled to be able to write her date of birth over and over and over again. I was with a student was, I was precepting a student, and together we labor managed and birthed six babies. So it was a very full call. We did triage, we did postpartum visits, we did nursery rounds. I don't [00:31:00] think I ate anything, nor had anything to drink. I mean, it was constant motion and activity. And I remember Changing out of my scrubs, saying goodbye, I'll do your re, your eval later, but you were great. Gave report to my successor, and then still got back home to get the birthday girl off to school. And I remember driving her to school, but I don't remember anything after that. And little would I know that that would be my last day as a midwife. And, on her birthday, and it was like I'm glad I didn't know, because I wouldn't have those memories as genuine as they are. As an example of my three days of screaming around well, I wasn't ICU for a while because I totally lost neuromuscular behavior. Lost my blood pressure. It was a pretty rough [00:32:00] recovery. I did rehab. I used a walker, then a cane, and then I got my braces. I had to learn how to speak again. My kids were I wasn't able to drive, but they were 16, so they had permits. So they were driving Miss Daisy around. And then, where I worked, they helped me do light duty. And even those attempts were unsuccessful. I couldn't manage the tasks. My kids who, who were learning other languages helped me learn and learn to build my vocabulary back with flashcards. And they were very intuitive about how, how tiring I would get trying to say things. So they were driving Ms. Daisy. So, of course I was angry. I had made my last graduate student loan payment. I was on my second career. I was thrilled I could earn a salary to support us. And I crashed and burned. And what happened was after I recovered I came home and again I was, like, [00:33:00] mad. So we had a wake. Ed helped me put all my scholarly nursing books in a Xerox box. We put the lid on it and put it in the basement on the top shelf. Like, almost we had like a wake and a burial. Jill Brook: Mm hmm. Sharon Roloff: And it gave me a chance to realize that it was final, and that it was sorrowful, and I had to release it. So, in turn I did donate all my books back to school for students who didn't have the resources to get new textbooks. But that kind of started my, I needed that three day of, release. And that's in the book. It was tough to read. It was tough to write and then read. But if I can do it, so can other patients with this. I did learn to, to speak again. I did learn to walk again and I just have my braces now. I had the best physical therapist and speech therapist and the kids were great. I loved my teenager. They're, they're [00:34:00] teenager friends. They're very genuine, they're very prickly around the edges, because they're still maturing, but they were straight with me. Like, you're a little bit unsteady there, you need a hand? You know, very, very genuine people. Yeah, I love teenagers. Yeah. Jill Brook: Yeah, okay. Well, we just have a few minutes left. Is there any more of the essays that you want to mention as notable or favorites? Laura Ruszczyc: You know, I guess there's one, and I don't remember where it is, but it's I Hate Roller Coasters. Or at least that's something in the book. So I wrote on Facebook, I hate roller coasters. And Sharon's sister in law private messaged me, because I knew her, I was my, her nephew and my son were friends, and said, are you on a roller coaster? And I'm like, no, this medical roller coaster. I saw this doctor that's supposed to help me and he says I can't, they can't help me and that's how I got hooked up with Sharon. So, just [00:35:00] the, I hate roller coasters whenever I think of that, I think of Sharon and thank God that her sister in law hooked us up because it changed my life and helped me, helped me get a treatment plan quicker. Sharon Roloff: It does bring together a magical plan. It's part of the reason why I'm a fairy godmother. You know, in Cinderella she goes, Bibbidi Bobbidi Boo, and it becomes a beautiful dress. People have come into my life and Laura's life when you least expect them, and they will bring joy, common sense, laughter, and they'll just sit with you. And it's not anything you can buy. It's wonderful. And I think that's the message, that even if our readers are halfway around the world, we're still right beside them. We'll pull up a chair. We get being in the ER. Laura Ruszczyc: In our Chapter 3, it's called Having Fun and it, and it talks about some of the things we've done, like [00:36:00] for me, like being able to ride my bike again, going on a family vacation, because you lose that stuff for a while. And I think in the chronic illness field, sometimes we don't remember that we might be able to have fun again when we're going through all this awful stuff. So I like that chapter because it kind of provides hope that, you know what, these things are rough, but they might get somewhat better and we can still embrace some of the fun in our lives. Jill Brook: Yeah, yeah, I always like to make sure we have messages for people who are at their lowest point because I'm told that there are some patients out there who when they're feeling their worst, they listen to this. And so is there anything else that you would say if there's somebody, if you imagine yourself at your rock bottom, what do you wish somebody had said to you at that moment, somebody who was experienced, who had reflected on this and learned a lot from it, somebody who had Blair Grubb, you know, writing the introduction to their book, you guys in some ways have kind of [00:37:00] like done it all patient wise. What do you, what do you wish you had heard in your darkest moment? Laura Ruszczyc: I got lucky in my darkest moments I had Sharon, and I literally would, I would message her or call her and she, she's like 10 years ahead in the in this medical maze from me. So just, like, she believed me and she, she helped explain things to me and she'd joke with me that denial is a river, right, what did you say, denial is a river, because I would deny that, oh, this can't be happening, and how can my body ... Sharon Roloff: yeah. In Egypt. Laura Ruszczyc: How can my body be doing this? So I think, I think for me, it's like really for those people, we believe you and we're sorry you're dealing with this. We know it's really tough. But we believe you and we, we are here with you. I think that's just to be validated is super important. Jill Brook: Yeah. Sharon Roloff: I think for those who are in the, I have compassion for those who write on their blogs [00:38:00] or on Facebook or Instagram that they're in the ER, they've just been admitted. People are trying to sort stuff out and my message to them is slide over. Make room for me. I'm right beside you. Ask for a heated blanket. Those are wonderful. They have an incubator. A blanket cooling box. Get a heated blanket. And if you need another one, ask for another one. And ask for a pair of fancy socks, and they're ugly. They're the ugliest things in the world, and you're going to throw them out. But it kind of is an insider secret about having that experience, getting those ugly socks. But we're right beside them, and we hope that that message rings true. Jill Brook: Oh, wonderful. And where can people find you online and where can they find your book? Laura Ruszczyc: They can find the book at Amazon. Just type in Dysautonomia Diary. It should pop right up. We have a Facebook group called Dysautonomia Diary, [00:39:00] Essays and Tips for Enjoying Life Despite Chronic Illness that they're more than welcome to join also. Jill Brook: Wonderful. Well, Laura and Sharon, I'm so glad you found one another. I'm so glad you wrote a book so that other people can benefit from what you've been through. We thank you for all of your insights and wisdom. And I know that everybody listening just wishes you guys all the best going forward. Laura Ruszczyc: Thank you, our pleasure. Sharon Roloff: We had fun. Thank you. Jill Brook: Oh good. Hey listeners, we hope you enjoyed today's conversation. We'll be back again next week, but until then, thank you for listening, remember you're not alone, and please join us again soon.

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