022 In Sickness and Health, on Lyme Voice

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Right. Well, I mean, you know, there's a huge cultural aspect to this that doesn't get talked about a lot, which is— I mean, it's essentially victim blaming, that like you're just not trying hard enough to not feel this way. And that is something that I have faced over and over and over again. It's something that I've internalized to a huge degree, and it's something that I have to actively work on not listening to because it's not helpful. It's not true. This isn't a failure of will. Oh, I love that. My joints aren't dislocating because I'm not trying hard enough not to.

Right.

Congratulations, Lyme Fighter! Today you had the courage to open your eyes and face another day. Welcome to Lyme Voice. This show's purpose is to help you put the puzzle pieces of Lyme into place. Each episode is designed to inspire, educate, and encourage you on your Lyme journey to wellness. Together we will fight. Together we will heal. Together we will live. Here are your hosts, Aaron and Sarah Sanchez.

Hello, Lion Voice listeners. Welcome to another episode of Lion Voice. So happy that you are all here. Today we have Kara Gale. Kara is actually starting her own podcast called In Sickness and in Health, and you can find that at her website insicknesspod.com. All the links to this episode will be listed at Lion Voice any of the information we talk about will be listed there as well. So if you want to look that up, go to lionvoice.com, look up Kara's episode, and you'll see it.

Yeah, and she's just got a lot of insight. She has a lot of medical background and that she brings into dealing with her illness and just has a very intelligent young lady. Yeah, intelligent and has just a really fantastic attitude about keeping going. Yeah, she's really inspiring.

Yeah, one of the things that she realized is there just wasn't a whole lot of information out there, and that's why she decided to do her podcast. So make sure you check out her podcast. Definitely gonna add it to my subscribe list. Hopefully you will too as well.

In Sickness and in Health will feature discussions and long-form interviews about living with chronic illness, disability, medical traumas, and everyday health struggles. We hope that by talking about these issues, we can help to normalize them, reduce the stigma, and help all of us to feel a little less alone and a lot more comfortable talking about it. We'll also be talking to people doing interesting and exciting advocacy work while highlighting the different forms advocacy can take. And I think you will really enjoy this. She's very engaging. And now, without further ado, here is Cara.

Welcome Lion Voice listeners. So happy to have you here today. Today we have Kara on the line. Kara is an amazing girl. The first time I heard an interview of her, I told Sarah right away, babe, we gotta get this girl on Lion Voice because she has such a positive message. She has the fight, heal, live attitude. She has the turn your poop into fertilizer attitude. This is a very inspiring girl. And I'm glad to have met her, and getting to know her has just been a real joy. So before we get in any further and I tell her whole story, we'll let her do that. Cara, welcome to Lion Voice. Are you ready to help us put the puzzle pieces of chronic illness into place?

I'm certainly ready to try.

All right, very good. Well, like I said earlier, you've had a chronically ill path. Um, it has been quite a journey, but why don't you give our listeners kind of your fight story?

Yeah, sure. So, like you said, it's been quite a journey. It's been a really long path. I was diagnosed just last year, actually, with something called Ehlers-Danlos syndrome. It's a genetic connective tissue disorder. So it affects how my body produces collagen. And so, you know, a lot of people think that that's just your joints, you know, your ligaments and your tendons, but it's a lot more than that. And I have a lot of secondary conditions because of that. I've been having symptoms since I was about 7 years old, symptoms that I can identify and really trace back to. There's probably other stuff, you know, that we didn't quite recognize at the time. I'm 28 years old, so if, you know, You do the math, that is 20 years of being told that it was all in my head and that I just needed to relax and that I had an anxiety disorder until I finally got this answer. Like I said to you before we started recording, I actually did have Lyme disease at one point in 2008. It's actually something that I usually leave out of my story because it is so long and complicated. But, you know, since this is a show about Lyme disease, I figure I will actually include it this time.

All right. Yeah, tell us more.

Yeah, so in 2008, I had it for about 5 months before I was treated. And I didn't realize that I was sick 'cause I was so used to feeling so crappy all of the time. I also had, like, I went camping one weekend and that Monday I started a new job, a new job in retail where I was on my feet all day and I was working really hard. And so I just kind of kept saying like, oh, this is just, I'm stressed out from the new job. I'm worn out from the new job. And then school started again. So I kept saying, you know, it's school and it's work and it's this and it's that. And not even realizing that, you know, I could barely turn my neck and I was starting to pass out a lot more frequently than I had in the past, which we can get to that a little bit later. That's part of the larger picture. Picture that I have here.

Yeah, that's a horrible scenario where I pass out more than normal.

Right, right. Yeah, it was a little unexpected. So it wasn't until I actually passed out while I was in class that I was like, okay, I guess I probably have to do something about this because I just had kind of really lost faith in medicine. And because every time I went to the doctor, it's like, well, we'll test your thyroid and we'll test you for mono but if you don't have those two things, you must be fine.

Of course. Right.

So I finally went to the doctor and that was a whole thing. And when you start experiencing what they call syncope, which is just passing out, they want you to go for a full neuro workup and a full cardiac workup because it could be, the cause for that could be any number of things. I was cleared by neuro. I was mostly cleared by cardio. They did find something else, but that seems to be unrelated. And then I started thinking like, when did these symptoms start? Like, this is somewhat new. Like, where can I point back to? Where did this start? And when I looked at it, I realized that these things started after having gone camping. Camping in upstate New York. I live, you know, this is an endemic Lyme area. Of course it's Lyme disease. It doesn't make sense for it not to be. So they did the test, which I, the regular ELISA test, which was negative at the time, but it was actually after I got treated that the antibodies started showing up. And then after being treated and everything, within a few months, all of those new symptoms that had shown up started to go away. So there's no reason for me to think that I still have Lyme disease, but I definitely have some lasting complications. Fibromyalgia-type pain is really what kind of stuck with me during this time. Funny story, a few years after having Lyme disease, I had a routine STD panel from, you know, just a regular gynecological checkup that came back positive for syphilis.. And I was like, that's not possible. Extremely responsible. My best friend's mom growing up, she was a sex ed teacher. So I was prepared. I was responsible. That's not possible. So I called them back and I'm like, what's going on? And they start asking me questions. And one of those questions is, have you had Lyme disease in the past? And I jumped up and was like, yes. Well, it turns out that the syphilis bacteria is also a spirochete. So it's really a cousin of Lyme disease. And so you can get false positives on syphilis tests if you have antibodies from having had Lyme disease. So that was fun to learn the hard way.

Yeah. Yeah.

Not one of our prouder moments.

Yeah. There's not too many moments that you hear about where people are rejoicing in the fact that it was just Lyme disease.

Right.

No. Yeah. Yeah, I don't have syphilis. It was just Lyme disease.

Oh, too funny. So you're going through, you've, you've encountered Lyme, you're recovering from Lyme, but did you have your diagnosis at that point?

No, I didn't get the diagnosis until last year. I had Lyme in 2008. Okay, so, um The kind of process to getting my primary diagnosis was really long and drawn out. Like I said, when I had that cardio workup after having Lyme, they found something called supraventricular tachycardia. It's an arrhythmia in your heart. The way that it was explained to me was that you just have some, you have cells in your heart that are responsible for conducting the electricity and making your heart beat. I had like an extra wire of cells cells in there. So what would happen is I would be sitting there, my resting heart rate would be 60, 70 beats per minute, and then all of a sudden, as if somebody flipped a switch, my heart rate would be 180, 200 beats per minute.

Yeah.

And get caught in like a feedback loop. So this was something that I, again, I had symptoms of my whole life and was always told it was anxiety. And it happened to happen while I was wearing the monitor. So as somebody who like always had normal tests, it was so exciting to finally have something pop up on a test. Like there's proof there's something wrong.

Which is so sad and so screwed up. Exactly.

So like I said, I'd always had symptoms of this, but the Lyme really made it shine. You know, I would have had episodes of this, you know, once every few months previously and now is having them multiple times a day. And it turns out, you know, it's not something that's fatal or anything like that, but it is extremely uncomfortable when your heart is beating at 200 beats per minute. So they said, you know, we can do this procedure. It's called a catheter ablation. And what they do is they make a tiny incision in your leg and they thread a catheter up through your vascular system into your heart and they just burn out that little extra wire in your heart. Whoa. Yeah, I mean, it sounds crazy, but compared to some of the other heart surgeries that you can get, it's actually pretty good. So I had that done in 2009 and then it came back, which was quite weird because it has like a 95% cure rate. So already I'm in that special 5%. My doctor, the doctor who performed the procedure, also had a really hard time getting to my heart. She said I have quote unquote weird physiology. So that's a technical term. She said that she thinks my heart is actually tilted, which is interesting. But so it came back. And so I, at that point, was just really sick of doctors and really sick of The whole experience had been pretty traumatizing for me. So I just decided like, okay, I know what this is. I know how to kind of break the rhythm when it happens and I know it's not gonna kill me so I can just live with this. And so I did for about 5 years, but then again, it started just happening more frequently, which is something that sometimes happens, you know, like whatever. So I decided to have the procedure again And I did that 2 years ago this month, October 2013. And after that procedure, all of the symptoms that I'd gone to the doctor for in the first place, the passing out, the dizziness, just really severe symptoms were back with a vengeance, like 10 times worse than they had ever been. And all of this time they were telling me like, oh, once we do the procedure, it'll solve all your problems. You'll feel so much better. Feel so much better, blah, blah, blah, blah. Well, that did not happen. Um, so I kept going back to the doctor and saying, there's something really wrong. And they kept telling me, sometimes with this procedure, this sort of thing happens and we don't know why. And that is not a good thing to say to me because I am like, that's not a satisfactory answer for me. Like, sometimes this thing happens and we just don't know why? That's ridiculous. I was so disabled by this procedure. I couldn't stand up, I couldn't take a shower, I couldn't do basic life things. My fatigue had always been pretty bad, was now I was sleeping 16, 20 hours a day.

Wow.

Yeah, so that was just like not acceptable to me. So I wound up seeing another one of my specialists for a routine checkup in her specialty. And I was explaining what had happened with the procedure what I was experiencing and the fact that they told me that this just happens. And she said, "Have you ever heard of this thing called POTS?" Which stands for postural orthostatic tachycardia syndrome. And if I wouldn't have passed out, I would have jumped out of my chair and I yelled like, "Yes, I read about that. I talked to my cardiologist about that. He told me it didn't exist." And she laughed and was like, "It definitely exists." She had multiple patients that had it. And so she was actually able to refer me to a doctor who did the testing for it, who then diagnosed me 'cause it was basically what I was experiencing. And what POTS involves is autonomic dysfunction. So your autonomic nervous system is the part that's responsible for all of the things that are supposed to happen automatically in your body, your heart rate, your body temperature. And so when a person with POTS stands up, they have a really significant heart rate increase, a minimum of 30 beats per minute from laying down to standing up. And so that can cause either syncope or presyncope, which is that about-to-pass-out feeling. So the thing with POTS is that it usually shows up to parties it's not invited to. I like to call it the wedding crasher of the dysautonomias because it shows up in the setting of autoimmune disease. It shows up in the setting of infections. A lot of people with Lyme disease do wind up developing it. It shows up in neurological conditions and it shows up in genetic conditions. And so I was researching all of these possible causes and just reading and researching, and I finally started to realize that my symptoms pretty closely matched this Ehlers-Danlos thing that I had previously never even heard of. What that involves is hypermobile joints, so joints that bend much further than they're supposed to, spread soft tissue pain, subluxation, and dislocations of your joints, which I have in a few of my joints. And so the thing with Ehlers-Danlos syndrome is that it's not taught very well in medical schools. Even my friends that are now residents and just becoming doctors who were only in medical school very recently only had 1 or 2 slides on it. But there's multiple types of Ehlers-Danlos syndrome and each type has different kinds of symptoms. And so it's a lot more complicated than just 2 slides lecture, right? And so I brought it up to a few doctors. They all got kind of wigged out and were like, no, it's extremely rare, that's not what this is. But the more that I learned about it, the hypermobility type, which turned out to be the type that I have, is actually a lot more common than previously thought. So when I was looking for somebody to evaluate me for this condition, I wanted to make sure that I was gonna see somebody who would know what they were looking at if that was what it was. So what I did was I went to—

I like that strategy.

Yeah.

Yeah. Well done.

If I were just to go to any rheumatologist, they would laugh at me and tell me I don't have that, or they wouldn't know what it was. There are plenty of doctors who haven't heard of it at all. So I live in the New York City area and there is an EDS support group in New York City and they actually have a recommended doctors list. So I went to that list, I found a rheumatologist who obviously was familiar with the condition. I went to see her and within 5 minutes, she had already taken my family history, my symptoms, And within 5 minutes of the physical exam, she was like, "I know exactly what you have." Because when you know what you're looking at, it's so obvious. And now that I know so much more about it, it's so obvious. So the fact that I was just wandering around for 20 years and everyone just didn't know what to do with me when it's so obvious was really frustrating. At the same time, getting diagnosed with an incurable genetic condition was the best day of my life because finally I knew that I wasn't crazy. I knew what this was and I knew, you know, kind of what to expect and to expect the unexpected, but just to know was such an incredible relief to me. And it's given me this incredible community and, you know, just really opened the door for me to kind of move forward with my life and say like, okay, this is what I have, this is what's going on. Now, now what do we do with that?

You know, Carrie brings up such a good point because, well, first of all, kudos to you in the fact that not only did you go through Lyme disease, you didn't just quit fighting at that point. Those of you out there who are listening, keep fighting for that diagnosis. Keep going. Because I mean, I hear Kara's point in that the best day of her life was the day that she got that diagnosis.

Normally that— I feel the same way.

Yeah.

I mean, yeah, I'm in the process of writing my story in a book and I wrote that chapter and I'm like, it is like literally being reborn because you have a chance. Right.

Yeah. And I know that I'm not going to get better and that's okay because this is a genetic thing. This affects me at a molecular basis. A cure is not going to come in my lifetime. If it did, it wouldn't be for adults. It would be gene therapy for children or life, you know, in utero. And like, not to be able to not go chasing waterfalls, you know, and try and, you know, chase down cures or whatever. Like, I know that that's not really a possibility for me. And being able to accept that and say like, okay, well, then what can I do to improve my quality of life is is so much more productive than just sitting around and waiting for a cure.

Yeah. Yeah, and that's so important. I mean, wherever you are at in your chronic illness journey, that's good advice.

And it also is, it helps save money if nothing else. I'm not chasing down all sorts of other diagnostic stuff. I'm not chasing down all sorts of like which doctor cures, 'cause I have a reasonable expectation for what I can expect with this condition. Condition, which is also, I mean, I don't wanna oversell the reasonable expectations because I honestly have no idea what's gonna happen in the future. It's a very unpredictable condition, but just knowing that is really helpful.

Yeah. So your heel story looks different. And so you're looking for ways to improve your quality of life.

Quality of life. And I would say that my HEAL story is more about healing the emotional trauma from being told I was crazy for 20 years, you know? Yeah. And being put through a whole gamut of tests and stuff that just didn't yield any results. And, you know, being told over and over and over again, there's nothing wrong with you, I can't help you.

Is—

really does a number on your psyche. And after I got diagnosed with POTS, I tried seeing a different neurologist than the one that I had been seeing, um, because he had never heard of POTS, and this other neurologist at least had. So I thought, oh, let me just see if maybe she would be a better fit. And when I started trying to tell her my history She— I think we were, to be fair to her, I think we were both having a really bad day, but she kind of freaked out and was like, basically said in not so many words, but— and this might not have even been what she was saying, but what I heard was, there's too much wrong with you, I can't help you. So it was just like this automatic about-face of going from hearing "there's nothing wrong with you, I can't help you," to now, "there's too much wrong with you, I can't help you." And that day was really a major turning point in realizing like, okay, this is where I really need to get in the driver's seat and find somebody who's not gonna tell me that, you know? Right. Yeah, so it's really been more about healing emotionally Grieving is a really big part of it. I thought that when I got my diagnosis, I was ready to kind of hit the ground running because I'd had so long and I'd already done so much.

I'm laughing in familiarity.

Yeah, yeah, I recognize that laugh. And actually somebody that I interviewed for my podcast, her episode's gonna be out next week, this will probably come out after that. She said, and she had rheumatoid arthritis, she said that in the first couple years she was still in complete denial, but it didn't look like denial because she knew all her facts. She was doing all the research, she was engaged in the online support groups, but because she was pregnant and breastfeeding during that time, her disease was actually in remission and she wasn't able to take the drugs. So there she was, you know, knowing all the facts saying, yes, I have RA, and then not believing it on a very base level. And I've been thinking about that a lot in the weeks since I did that interview. And like just last week, I realized after, you know, having a stomach virus this month that really threw me for a loop, I realized that I was still in a lot of denial because I was thinking if I can just avoid getting sick, and avoid getting injured and avoid eating certain things and avoid this and avoid that, then I'll be fine and I'll be stable and whatever. And, you know, the reality of things is that you can't avoid all those things. Those things are going to happen. And I need to do a little bit better job of, you know, staying aware of that. Yeah, it's definitely an ongoing process.

I call that like shoulding yourself when something goes wrong. And people who deal with a chronic issue all do it. And it's like one little thing happens. And I did it to myself for years. And that's been part of my last 2 years' emotional healing is giving myself freedom not to go there. But I would be like, oh, I should have known that I was going to twist my ankle. I should have known that my kids were going to get sick and I would get sick. I should have done this. I should have done that. Because when you don't have those autonomic functions, then you have to become aware of them, really, essentially, to, you know, you're aware of all that dysfunction, right? It's a terrible— that's a terrible place to live. And yet we all do it to try to make sense of it and control the chaos.

Yeah, I think it's, it's probably, you know, it's a little bit of your brain trying to protect you. Yeah. Because if you really were fully living in that space of like, I have no control over anything, you'd probably go nuts. So I try to control for the factors that I can and then say, I can't control everything. To actually fully grasp that and believe that, I think I'm still really trying to work on that a lot.

So during your particular heel story, what has been one of the biggest assets as you're moving forward now?

It's a good question.

I really like the analogy you used of being in the driver's seat. Yeah, I heard, I heard someone say the other day, like, see any doctor you want, but never let go of the reins. And it's true, you have these pivotal moments where you realize you've given power away or settled for something that you shouldn't. And it's like, okay, game on.

Right, exactly. I would say one of the biggest assets that I've had in this kind of journey is my intelligence. And I don't want to be like, I'm so smart. I am, but that's not the point. I just mean that like, you know, I— and this has, you know, this is as much luck as it is anything else. I took 4 years of Latin in high school, which has helped so much with reading medical literature. Even if I don't know a word, I'm able to at least recognize its root and, you know, its suffix and that sort of thing and figure out like, okay, what does this mean? Right, without having to stop what I'm doing and look it up and that sort of thing. So that's been a huge asset. Um, I took honors and AP sciences in high school. I took science in college, you know. So having that kind of educational background has been really helpful to be able to evaluate information. And because there's so much garbage out there, you know, being able to figure out what is legitimate and what is not, what's worth paying attention to, has been really helpful. I mean, just the fact that English is my first language, you know, there's so many things that kind of lined up that had to— like, the stars just had to align in a certain way that made it possible for me to get to this point. And it's not something that everyone can do, and I recognize that fully.

Yeah, that makes sense because medical is a new language. And I remember for me, I would describe a symptom or something and they were always like, oh, that doesn't seem like that big of a deal. And so to me, it took me a long time to realize, like when I would say, oh, okay, I feel like I'm going to pass out every time I stand up. It took me a long time to find what that meant in medical terms so I could communicate it accurately. Exactly. And what was so appalling to me was the more I figured out, as far as like all these mysterious symptoms actually had a medical term. Yeah. And I'm like, what the heck? Like, they know this is in the vocabulary. This is a part of their language. So when someone is saying, here are these 10, 12 weird symptoms, and they're struggling to articulate, like it is really helpful. You have to come to that point where you speak medical in order to get any help.

Right. But you can't speak too medical. I know. Then they'll judge you for that and they'll think you've made all this up based on research that you've done or that you're seeking drugs or something like that.

How dare you look on the internet?

Right. Yeah. And so something that I've done is fired a lot of my doctors. Because I can't continue to see somebody who's not gonna take me seriously. They're putting me at risk if they're not going to take me seriously. They're putting me at risk of complications from untreated disease. They're putting me at risk for medical errors and diagnostic delay. Like that to me is no longer acceptable. I need doctors who are willing to be collaborative and are willing to let me participate in the process because I know my body better than anyone else. I live here, you know, like 24/7, 365 days a year. I'm inside my body and I know what it feels like and I know what's happening. So it's ridiculous that any doctor wouldn't want to hear my input, you know, or wouldn't want to share in the decision making. I've now assembled a really fantastic team of physicians who are all very collaborative. They all are okay with me being in the driver's seat. You know, they're— a lot of them actually defer to me on a lot of decisions because they know that not only do I know more about my body than they do, but I know more about these conditions than they do because they're obscure and I've read everything. I've watched all of the lectures that are available. I've done so much more research on this stuff than they have. So really, I'm the expert and they just do my bidding, I guess. Also, I'm able to use them as a soundboard and bounce ideas off and that sort of thing. So I'm really happy with the team that I have now, but it really was quite a process, and I went through a lot of doozies in the process of trying to find them. Wow. Yeah.

What is the medical or scientific term— that process like you were talking about earlier, how you are— it's so confusing because you feel so much of this stuff going on internally, and then you don't really get any validation.

So what—

it's like fighting with your subconscious or your body. I always felt like I was fighting with my body because my body was saying, I am in so much pain, and then I was trying to use my mental little, you know, power to be like, okay, yeah, you are. But it's— I was constantly talking myself into continuing to believe me, right?

Well, I mean, you know, there's a huge cultural aspect to this that doesn't get talked about a lot, which is— I mean, it's essentially victim blaming, that like you're just not trying hard enough to not feel this way. And that is something that I have faced over and over and over again. It's something that I've internalized to a huge degree. And it's something that I have to actively work on not listening to because it's not helpful. It's not true. This isn't a failure of will. Oh, I love that. My joints aren't dislocating because I'm not trying hard enough not to. Right.

But it becomes that as you try to should yourself and figure out all those strategies. Right. It does feel like a failure of will, which is the exact opposite of what's going on. But yeah, it's like this tangled web.

Yeah, it definitely is. There's so much of the cultural messages that we get. There's so much ableism out there that we really internalize, and a lot of times we're our own worst enemy. Oh, totally. What I try to practice is kind of radical self-compassion and saying, and if I am doing kind of negative self-talk, I'll ask myself, if I were a friend of mine, if I were somebody, if I were a loved one, would I ever say these things to that person? Or would I even think those things about that person? And 100% of the time that answer is no. So if it's something that I wouldn't think about or say to somebody that I love, I'll try and pump the brakes on saying it to myself because it's not— it's just, it's not helpful. Like, it's not getting me anywhere. It's only making me feel worse.

I love that, Cara. Radical self-compassion.

Yeah, um, actually, if you go to insicknesspod.com/blog, uh, I wrote, uh, a blog piece about that, and I also included a kind of algorithm that I created for the days where I'm having an especially bad day, um, and I'm having a hard time getting up and getting out of bed, I have a decision-making chart of like, okay, can't, you know, like if I follow these steps and I still can't get out of bed, I've tried everything, I've, I've made the attempt. Today is one of those days that's just going to be a bad day. And I can feel so much better about that than if I just didn't try, you know? Oh my gosh, yeah. Yeah. Well, I love that.

I would never have put it in those terms, but I would tell Aaron that, like, I have to run through this decision-making process and putting it on paper with step charts. I cannot wait to see that because I kind of do this dialogue of like, okay, these are the 6 things that have to be done. These are the one thing that, you know, you're constantly juggling the tasks in your head based off of how you feel, which fluctuates from minute to minute.

Right, and as if you didn't have enough spinning plates in the air, you're trying to juggle so much other stuff that just that internal decision-making process is like, it just adds so much more complication to the process. So putting it on paper, yeah, putting it on paper was a really good exercise for me.

Well, cool, tell us a little more about your podcast. The name of it is In Sickness and Health, which is a great name, by the way.

Thank you. Yeah, it's been such a long, long process. Like I was saying before we started recording, I had the idea last December. So it's been 10 or 11 months that I've been kind of working on this. I, at the time, wasn't able to find any other chronic illness podcasts. Obviously they exist. I know that now. But basically, like, I wasn't hearing what I wanted to hear, so I just decided, like, okay, I guess I'll do this myself. I've been a huge podcast fan. I've been listening to podcasts for about 10 years now. So when the idea smacked me in the face, it was so surprising that I hadn't thought of it sooner. And so, you know, I was just kind of conceptually grappling with it for a few months, and then This summer I did a workshop at Columbia Medical School in a field of study called narrative medicine, which is part of the kind of larger movement to bring more of the arts and humanities into medicine and medical practice. And so doing that workshop was really helpful because it really helped me better understand some of what I wanted the show to to accomplish, and also we spend a lot of time talking about ethics and the ethics of handling other people's stories, which is something that's really important to me. I want to make sure that I'm respectful of people's stories and that I'm not altering them to accomplish a certain goal that I have because it is ultimately their story. And there's definitely sample bias in the people that signed up for this workshop, but unbelievably, in my small group, there was somebody else who also had Ehlers-Danlos syndrome and POTS and had had Lyme disease. Like, it blew my mind. It was so incredible. And we're still in touch. She's now a friend of mine. Um, so that was such an incredible experience, not only to, to do the workshop, but then also to be You're like, holy crap, you've been through this too. And she's actually in medical school right now, which is amazing because hopefully she'll be able to, you know, make it through her residency and stuff and then be able to practice and bring this personal experience into her practice, which just gives me chills when I think about it.

Yeah, it's gonna be so powerful.

Yeah, exactly. Unfortunately, the training process to become a doctor is extremely grueling and very difficult physically. So it really is a huge barrier to entry for a lot of people with chronic diseases. I think we need so much more people in medical practice who have some personal experience with this stuff. So I did that. And then my local public radio station, WNYC, did a podcast accelerator program where you could apply. You filled out like basically a creative brief and submitted, and then they would pick a show to kind of develop into a show for them. We didn't wind up getting picked, but just the process of doing that kind of further, it really kind of congealed the podcast into an actual thing. And ever since I've been recording and working on it and we're launching on October 27th. Yay. Yeah, so I'm super excited. I'm actually, because October is Dysautonomia Awareness Month, I'm launching with a series of episodes episodes, I'm hoping to have maybe 4 or 5 different interviews with dysautonomia patients because it can affect people in such drastic ways. And so since October is Dysautonomia Awareness Month, I'm launching with a series of interviews with dysautonomia patients because it is something that affects people in such drastically different ways, and there is a real diversity of experience in the community. So I really wanted to highlight that and bring and kind of come out of the gate with something that's really deeply personal to me. But we'll have, you know, all sorts of other medical conditions on the show. I have people with RA, I have people with fibro, I have people with, you know, a whole array of different health experience. The show is by, about, and for sick people, but I'm hoping that it'll also speak to both caregivers, healthcare providers, but also everyone, because at some point everyone is going to be a patient.

That's awesome. Thank you. Yeah, it's so inspiring to hear you talk. And I like even how you're saying going through the process congealed this whole new concept for you.

Mm-hmm.

Yeah. And that's extremely powerful.

Yeah. I mean, everything's a process. We talked about before we started recording that some people start a podcast and they just hit the ground running. I wasn't ready to do that. I thought that that's what was going to happen when I decided to start a podcast. Like, oh, how hard could it be? I'll just talk to people about being sick. But I know it's taken a lot more planning and a lot more kind of conceptual planning of Well, what exactly are we gonna talk about and what kind of topics do I wanna cover and what is gonna make my show unique from the other ones that I've since discovered that exist? I definitely wanna focus a lot on things like women's health and a lot of the kind of structural inequities that kind of leave marginalized groups at such a disadvantage in our system. I don't want to focus entirely on that big picture stuff because I think a lot of those conversations are already happening, but it's definitely going to be kind of woven into the patient stories that I hope to feature.

Awesome. Well, Carrie, if people want to get a hold of you and they're not able to look at the show notes— because of course we'll list all your information on the show notes and at livenvoice.com if you want to get a hold of Kara that way. But if they want to just jot it down, can you repeat it for us so people know where to get a hold of you?

Sure, you can visit our website insicknesspod.com. There's a contact form there. You can also email us at insicknesspod@gmail.com or find us on Twitter @insicknesspod.

Very cool. Now Kara, one of the things I wanted to talk to you about is I call it the poop to fertilizer. Life hands us stinky poop sometimes.

Yes, it does.

We didn't want it, but we got it. And what are you gonna do with it? You have to deal with it. You have to do something. If you leave that in the living room, it's no good.

Right.

So, and as I hear your story, I see you took that fertilizer, that pile of poop— I'm sorry, it was a pile of poop. It wasn't fertilizer yet. You took that poop, you turned it into fertilizer, and you're using it to not only help others but help yourself. Yeah, I really—

yeah, the podcast is just an excuse for me to like have like a therapeutic process of, you know, dealing with what I've been through.

Yeah, I know. If you listeners have ever thought about joining us with us podcasting, do it for that reason only. You'll— it'll be worth it.

Yeah, I mean, I've, I've learned so much about the chronic illness experience in general and the different ways that people deal with it, but I've also really learned a lot about myself in the process. So it's been really, uh, kind of awesome to work on.

It's a cool side effect, isn't it? Yeah. Awesome, Cara. Well, we're so excited to have met you, and for you Lyme Voice listeners, please go listen to Cara's show, subscribe, Give your rating and review, and since you're in the mood and you haven't done it for LimeVoice, please do that for us as well. That's how shows like Kara's and ours get out, is by those ratings and reviews so that others who are dealing with this can find them. But Kara, before we let you go, can you give us a quote that has really helped you through this, uh, the last few months as you're growing and stretching your reach and your touch in people's lives?

Yeah, I've been trying to think of one. Um, I'm not really like an inspirational quote kind of person, but, uh, I can quote Guns N' Roses in this situation, in that nothing lasts forever, even cold November rain. So even though this condition will last forever for me, it's not always the same thing. It changes constantly, and in that change is such a relief. I mean, it's terrifying, but it's also a relief because at least it's not the same thing all day, every day, all the time.

Thank you so much, Kara.

Yeah, thank you so much for having me.

Yeah, we do look forward to hearing more about you, and I think by the time this releases, your podcast will have been out for at least a month.

Oh, okay, great.

Uh, looking forward to hearing more about that.

Yes, I will look as soon as those episodes go up. There's actually a preview on our website that's available now. It's about 4 and a half minutes if you want to take a listen to that.

Perfect. Thank you so much, Cara.

Thank you guys. This was great. Bye.

Bye. Disease is contrary to life. Therefore, wherever disease exists, life must also fight to exist.

Good job fighting, Lyme fighters. Keep it up. We'll see you next time. LymeVoice contains general information about medical conditions and treatments. The information is not advice and should not be treated as such. Okay, Lincoln? Okay. The medical information on LymeVoice is provided as is without any representations, warranties, expressed or implied.

Okay?

Okay. LymeVoice makes no representations representations or warranties in relation to the medical information on this podcast. You must not rely on the information on this podcast as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about your medical matter, you should consult your doctor or other professional healthcare provider. And for you, you consult your parents, okay?

Okay.

If you think you may be suffering from any medical condition, you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this podcast. Got it, Lincoln? Got it.

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