104 To LIVE Would Be An Awfully Big Adventure

I knew I had to keep fighting because I had kids that were dependent on me. And I remember thinking the same thing, like, if I, if I commit suicide, all this horrible pain that I would never wish on anyone that has consumed me will be shoved out on them. That will be my parting gift to them. If I commit suicide, then they get left with the pain, which is the very thing I'm trying to overcome. And so it, for me, it was like, okay.

Welcome to the Blind Voice Network. We are chronic illness warriors, caretakers, and advocates who are overcoming illness in all of its many forms. We created this show to inspire, educate, and encourage you on your path to Wellness. We're here to help you put the puzzle pieces of healing into place. Join us and our network of Lyme warriors as we discuss how fighting is a mindset, healing consists of choices, and living is the outcome.

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Lime Voice thanks Invita Medical for the continued support. Please reach them at 1-866-830-4576. Hey, Lime Voice listeners, we love bringing these episodes to you every week. If you would like to help us and support us, there's several ways you can do that. Those are all listed at limedvoice.com. And if you look there, there's ways you can donate even as little as $1. Any would be appreciated to help continue to get the message out, to help fight, heal, and live. Thanks again.

Welcome to another episode of Lime Voice. I am your host for today, Sarah Slickdy Sanchez, and this week we have a couple of new advertisers, which I'm really excited to tell you about. If you guys have not listened to the episode with tickwarriors.com, that is a great place to start. Tickwarriors.com was founded by a former Lymee, and you can get 10% off if you use the source code LymeVoice. At tickwarriors.com, but it is safe, effective treatments for your property, your pets, and the people you love. And I just got a new order of it today and we're doing our yard because ticks are terrible. Make sure you check out tickwarriors.com. But one of our new advertisers is LymeTV.org, and LymeTV.org is an all-volunteer tick disease education not-for-profit that provides free tick education to schools and community health events. They have filmed a Tick Talk series, which is a humorous PSA on tick diseases, and they're currently filming a scientific documentary on Lyme disease. LymeTV is a public health not-for-profit organization that is dedicated to reducing the incidence of dangerous tick-borne diseases. So check them out at LymeTV.org. And we also have an advertiser. It's called Integrative Health Colorado. So integrativehealthcolorado.com is their website. But this is founded by Elizabeth Kirk, who is a nurse practitioner who overcame Lyme disease. As she was studying to become a nurse practitioner at the University of Colorado, she was diagnosed with chronic Lyme disease. Tick-borne illness, multiple chemical sensitivities, chronic fatigue syndrome, and toxic mold exposure. If that does not sound familiar, a lot of those diagnoses go hand in hand. Um, but because she did not find relief going through conventional medicine, it changed the way she viewed disease and medicine. And we actually have an upcoming episode with her talking about how disulfiram has changed her practice. So if you are looking for an affordable alternative healthcare practitioner, she does telehealth calls all over the United States now. So it's $300 for the initial visit and $150 afterwards. That is so affordable. And because she understands the journey and the expense that so many of her patients are on, as a patient of hers, you can also get the practitioner pricing on the supplements that she recommends, which is about 50% off depending on the brand. So those are 2, 3 great resources for you guys. If you have not checked those out, I would highly recommend it. And thank you to Lyme TV and Integrative Health Colorado for partnering with Lyme Voice. Before we get into this episode, I want to talk to you guys about some stuff that I've just been mulling over in my own journey. And you've probably heard me talk about the book, The Obstacle Is the Way, and it's by Ryan Holiday, and it's the timeless art of turning trials into triumph. But there is a chapter in here called Recognizing Your Power, and I want to read it to you guys because it's just been hugely, profoundly helpful to me over the last 6 to 8 months as we've gone through some big changes and just some hard, hard life stuff. When you deal with life with a chronic illness, it just kind of feels sometimes like you're constantly putting out fires. And even though my health is doing really well, I have shared with you guys that Aaron and Nate have really— their health tanked in the last year, and they will both actually be going through some form of treatment with Elizabeth from Integrative Health Colorado this starting this summer. Both Aaron and Nate are going through treatment with her. And, um, this chapter called Recognizing Your Power has just been really profound. And I've read this book at least 6 times, but I want to read a chapter of this, and hopefully it will empower you in the same way that it has empowered me. So, Reuben Hurricane Carter, a top contender for the middleweight title at the height of his boxing career in the mid-1960s, was wrongly accused of a horrific crime he did not commit: triple homicide. He went on trial and a biased, bogus verdict followed: 3 life sentences. Wow. It was a dizzying fall from the heights of success and fame. Carter reported to prison in an expensive tailored suit, wearing a $5,000 diamond ring and a gold watch. And so, waiting in line to be entered into the general inmate population, he asked to speak to someone in charge. Looking the warden in the eye, Carter proceeded to inform him and the guards that he was not giving up the last thing he controlled—himself. In his remarkable declaration, he told them in so many words, "I know you had nothing to do with the injustice that brought me to this jail, so I am willing to stay here until I get out. But I will not, under any circumstances, be treated like a prisoner, because I am not, and never will be, powerless." Instead of breaking down, as many would have done in such a bleak situation, Carter declined to surrender the freedoms that were innately his: his attitude, his beliefs, and his choices. Whether they threw him in prison or threw him in solitary confinement for weeks on end, Carter maintained that he still had choices, choices that could not be taken from him even though his physical freedom had been. Was he angry about what had happened? Of course, he was furious. But understanding that anger was not constructive, he refused to rage. He refused to break or grovel or despair. He would not wear a uniform, eat prison food, accept visitors, attend parole hearings, or work in the commissary to reduce his sentence. And he wouldn't be touched. No one could lay a hand on him unless they wanted a fight. All of this had a purpose. Every second of his energy was to be spent on his legal case. Every waking minute was spent reading, reading law books, philosophy, history. They hadn't ruined his life. They just put him somewhere he didn't deserve to be, and he did, and he did not intend to stay there. He would learn and read and make the most of the time he had on his hands. He would leave prison not only a free and innocent man, but a better and improved one. It took 19 years and 2 trials to overturn that verdict, but when Carter walked out of prison, he simply resumed his life. No civil suit to recover damages. Carter did not even request an apology from the court, because to him that would imply that they had taken something of his that Carter felt he was owed. That had never been his view, even in the dark depths of solitary confinement. He had made his choice. This cannot harm me. I might not have wanted it to happen, but I decide how it will affect me. No one else has the right. This is the part I love. We decide what we will make of each and every situation. We decide whether we'll break or whether we'll resist. We decide whether we'll assent or reject. No one can force us to give up or to believe something that is untrue. Such as that a situation is absolutely hopeless or impossible to improve. Our perceptions are the thing that we are in complete control of. They can throw us in jail, label us, deprive us of our possessions, but they'll never control our thoughts, our beliefs, our reactions. Which is to say that we are never completely powerless. Even in prison, deprived of nearly everything, some freedoms remain. Your mind remains your own, if you're lucky, and you have books. You have a lot of time. Lots of time. Carter did not have much power, but he understood that he— that was not the same as being powerless. Many great figures, from Nelson Mandela to Malcolm X, have come to understand this fundamental distinction. It's how they turn their prison into the workshop where they transform themselves and the schoolhouse where they began to transform others. I have often felt like living with Lyme, you're imprisoned within your own, own body. Um, I've said that many times, and that can feel very similar to living an unjust sentence. And I have felt that way many times, that I've been falsely imprisoned for who knows how long by a symptom or by the lack that comes when you're battling this long-term chronic illness. But I just want to remind you guys that it's easy to feel powerless when doctors are disappointing you, when therapies don't work, or when you need to look at different protocols. It can all feel like a great injustice, and it is. There's no doubt about that. But there can be a way out. And I feel like what Lion Voice has done is provided documented journeys of overcoming. And that's what I feel like I try to bring in each guest. Each guest has overcome some aspect of their illness. Some of them have overcome a lot, but it really is this documented journey of overcoming one hurdle after the other. And so if you are struggling with your perception and you need help turning your trials into triumph, I really recommend this book, The Obstacle Is the Way. It's been very helpful for me just to focus in, in a new way on trying to overcome some of the things that are blocking me and my family. Please just know that none of this is easy. It's not easy, but there is a way out and a way through. And so many of our guests have bring that to light, have brought up some aspect of their journey, um, and been able to overcome it. So enjoy this episode. Check out The Obstacle Is the Way. Have a great week.

If you're listening to this show, you're probably not a fan of ticks or biting bugs. Many of us can't even enjoy the outdoors because of pests like ticks and mosquitoes. You know, Sarah and I realized this in a very sobering way with her second tick infection. You know, we live in Colorado, one of the most beautiful places in the world, but honestly, we were scared to enjoy it. That's why Tick Wires invites you to come to the green side and join them in the war against ticks. They provide— check this out— eco-friendly products for you, your family, pets, and yards to reduce damage from ticks and tick bites. Learn how to safely protect your family and yards and help battle tick-borne illnesses. Remember, ticks will bite year-round in many places. To learn how you can enjoy the outdoors again, visit tickwarriors.com. Go to episode 92 to hear the full episode about the products. Also, don't forget this: Tick Warriors is offering a 10% off discount to all first-time purchases. Simply add LimeVoice at your checkout and you get 10% off. Go to tickwires.com today.

Welcome, welcome, welcome to another episode of LimeVoice. With me today is Josie Busby. Josie, thank you so much for being here today.

Of course, it's my pleasure, really. Good.

Well, I think one of the most interesting things about your story is You know, to some extent we all have similar stories, but the thing that made an impact for me when I heard your story is just you were in high school, except you were not in high school because you were home because you were treating Lyme disease. And so you have really had a very unique experience of going through high school with this huge chronic illness and not being able to engage the way you would normally have wanted to. Um, so thank you for being brave, um, and willing to talk about that because I know it's really hard, especially as a young adult. I mean, in high school you're not even a young adult yet, but you're trying to create a life and you're trying to grow, and yet you're battling this huge illness. So tell us a little bit about your journey with Lyme.

Well, I mean, it all started when I was about like 15 or 16, so right at the start of high school, like 9th grade. We— I was homeschooled that year. We had decided to homeschool me, so it ended up working out great because my anxiety had just gotten so bad out of nowhere and we couldn't figure out what was going on. On with me. And we finally figure it out, and I try and go back to school, 10th grade, and ended up having to be put on homebound, which is basically homeschooling through the school. Yeah. And then I had to have my gallbladder taken out and my tonsils taken out and was so sick recovering from that. And then that Christmas is really when we got the diagnosis, I believe. I'm sorry, my timeline's not perfect. That's right, because Lyme brain. Yeah. I mean, it happens. Usually I have my mom sitting next to me being like, "Nope, that didn't happen that year, it was the next." But then I was still just wanting to have the normalcy of going to school. And so I tried and ended up homebound most of 10th grade, tried to go back for my junior year and it just, it wouldn't, it couldn't work. I couldn't sit in a desk in those fluorescent lights all day. I couldn't stay awake, let alone remember anything. So we tried homebound and then that was even a disaster with trying to deal with Lyme and school and remember things. So at the end of my junior year, my mom and I, I was finally just like, I can't do this anymore. And we decided to take me out of school for good and be a dropout, which is my favorite thing to tell people is I'm a high school dropout. My friends and I like to joke— my two, my very best friends are always like, "Jizzy, you went to school for like 3 months in total." So it was— school was just an experience. It wasn't so much the learning I was looking forward to, it was I just missed being around people and the schedule and the normalcy of seeing my friends every and eating lunch with them. And I mean, at one point I even missed waking up at 6:00 AM to get ready and go to school. So it was just all of that on top of dealing with trying not to die and taking like 50 pills a day and oh, just everything on top of it, the constant pain. The short-term memory, the not being able to speak and correct words. I still can't, but that's just the main thing at this point. But not being able to like find the right words. At one point I called shingles plates. It took my mom and little brother a hot minute to figure out what I was trying to say. Yeah. When I could have sworn I was saying it right. Yeah.

Word loss is really hard. Because then you feel disconnected from people because you can't communicate the way you want to, right?

And I mean, I've always had like, I guess, little quirky things that I say, and my friends are just like, you have to learn how to speak Josie. Well, they ended up in like an advanced class of trying to figure out what I was trying to say. Half the time they'd sit there and be like, I need you to describe it a little bit more. So it was, it was hard. Luckily I was surrounded by people willing to put in the effort to be like, what the heck is she trying to tell me right now? So I got lucky in that aspect, but it was just, I don't know, Lyme turned my life upside down. I went from playing softball 5 hours a day to not being able to get up and being able, being the social butterfly that was just walk up to anybody and say anything to I can't walk down and get the mail because someone will look at me. Type of anxiety. Was—

do you think anxiety was one of your first symptoms? It was.

I mean, that and kind of the weird pains, because we always— I mean, I played sports my whole life, and I did not— I made a very low contact sport at many points, so I was not easy on my body. So we were always like, oh, Well, your joints aren't connected correctly anyway. That runs in my family. So they're like, you're just being too hard. Ice it, heat it, rest. You'll be fine. And that was me and my family just being like, no, it's a softball thing. And then the anxiety hit and the pain got worse and the fatigue got worse. And I was just sitting there telling my mom, I'm like, I know something's not right. I can't tell you what it is because I don't know, but I know something's wrong. And we just got sent into this overdrive of going to doctor after doctor after doctor trying to figure out what is causing a seemingly perfectly healthy, in-shape 16-year-old to go from that to completely debilitated, right? And it took forever. We had a doctor give us a positive Lyme test, and then she came back and was like, well, it's not— those could be— sorry, excuse me— those can be Wrong. You can get a false positive. It's not that. Basically fired me as a patient. Wow. And we went back to our urgent healthcare, like, little facility that we had been going to and became friends with the nurse practitioner there. And she was like, I have it. I'm telling you, you don't get false positives. Yeah. Here's a list of doctors. This is what you need to do. And she sent me on this incredibly weird awful but exciting in a way journey of here's what's wrong, which just that validation in itself was a huge relief.

So what did you think? So you get diagnosed, how long did that take? Like, was that like your sophomore year then?

So yeah, I think it in freshman year because I came out of a really bad 8th grade year. My dad had gotten divorced from my my first stepmom and just a lot of personal things like that. And my anxiety got really bad. I was yelling at my mom every day and finally was just like, I can't do it. I can't go to school. Can we homeschool please? And they let me. And so, I mean, I was lazy all year. I did my work, but I wasn't like out and about all the time, but still feeling okay. So it really hit sophomore year. I want to say it took about a year and a half, the end of freshman going into sophomore year. So probably about a year and a half. Okay. So just figuring out what was wrong.

Your mom is a mental health professional. And so how did she— when she's looking at you and you should be perfectly healthy and fine and you're dealing with huge anxiety issues, what was— what were those conversations like at the beginning of your journey? Was it about distressing? Did she believe you?

That's a, that's a fair question. I'm sorry, Mom, in advance for if I say anything, but I love you. Um, I mean, it, to me, I mean, she'll sit there and tell you, and I fully believe her, that she's in the background going, what is going on with my kid? Like, what happened to my healthy outcome? Wing, full of energy, can't focus on anything child, going from that to she doesn't want to leave her bed all day. Yeah. And I believe that fully. But what I was getting was the, you have to get up and go to school, which is what she— it's her job as a mother to be like, you're a teenager, you're tired, you have to go to school. Like, is what you do. You get up and rally. And I think it scared her, but she couldn't show it to me and freak me out. And because I'd be okay, go to school, and then text her halfway through the day and be like, I can't make it. Yeah. And I, I couldn't give a reason because I didn't know what was going on or how to explain, like, I don't know what's happening, but I know something's wrong. Please let me go home. Because that's— I mean, that's not really a reason if you look at it, because she'd be like, well, are you just tired? Are you hurting? And I'm like, I don't know, something's just not Right.

Something's wrong. Wow.

So I think it was she believed me, not fully at first, because like, I mean, I was a teenager. What do you expect? I didn't want to go to school. And then it turned into I would have given anything to go to school. But I think she did believe me, and she tried to get me to de-stress because I was also My moods were out of control. I was angry all the time, more than just like a teenage angst. Like, I was on Lamictal at one point and my whole family called it the anti-Hulk medication because it just like made me be a rational thinker. But I mean, I feel like she believed me the best she could at first, and then she saw it more and was like, something's wrong with my kid. We have to figure out what it is. And my mom did everything she could. She yelled at doctors. She was like, I'm telling you, something's wrong. This is not my child. So she, she did really fight for it and for me just to figure out what was going on.

You know, it's interesting because I got sick at 18. That was when I started. But, you know, you don't ever think you're going to get sick and not get better. Right? Everybody gets better, or, oh, you are really sick, maybe for a couple of weeks. And so I've lived this for a long time. But even in the last year here in our household, my 15-year-old has chronic Lyme or congenital Lyme, but he's done really, really well for the last— since about 3rd grade. He's a freshman now. And he ended up having a surgery this year. He got his wisdom teeth out, braces on. And it's just been this downward spiral for— with his health ever since. And he had actually missed about a fourth of the school year and about a third of his basketball season. And we are just going— even though I know what I'm looking at and I know what's happening, I am still surprised that it kind of took me 9 months to look back and be like, wow, he's not doing well. Like, we are in a new season with him where we have to start functioning differently and getting him back on more treatments because he had done so well. And I know what I'm looking at. So I know for a parent who doesn't know what they're looking at or doesn't understand it, it's an unfathomable, unfathomable illness. So even when you know what you're looking at, it's hard to know what to do or what that best decision is. Because for Nate, we were at the point where we were probably going to have to pull him out of school. And because of the shutdown with Corona, it worked out that everyone's at home doing school anyways, but it's a huge issue trying to deal with the mental health side and the anxiety and all light sensitivities and then not be able to like pinpoint what is exactly wrong.

Yeah, and it's, it's, it's, I mean, even looking at, because Lyme can mimic anything at this point, it feels like. That you're like kind of in denial of that can't be it. Like, this can't be happening again, which is how we feel. I get a cold and I'm like, Mom, it's back. Yeah, it's not back. You're okay. Give it a week. So, I mean, I get that because if I, if I see my little brother start having weird little things that I could see as Lyme, I'm sitting there telling myself, no, it's not that. Like, it's not— it can't be that, even though he's been in treatment and he's gotten the all clear. But it's still always like, that's not what it is, just because you don't want it to be that, because it is this big scary thing. And when this all started, Mom had no idea what we were looking at. She just knew that I did a complete 180 on how I was as a human. That she was like, something's up. Like, I believe my child. Something is wrong. Yeah. If she could put it into better words than something is wrong, that would be great.

But so let me ask you this. I know along the way you had to start adhering to dietary restrictions and going gluten-free and different stuff, which is just— it's hard for anyone. But really hard as a teenager. So what were some of the mindsets that you came across and/or adopted and/or started to implement that made a difference for you in your emotional journey?

I mean, I feel like it wasn't necessarily my own mindset because my mindset was in a really bad place for a really long time. Time. It was more the mindsets of everyone around me, because when, when people get sick with Lyme and it gets bad, it's, it's dirty, it's horrible. You can't see it. It's this thing, because I mean, if you have cancer, you do chemo, you go bald. Like, it's something you can see. Yeah, you can't really see Lyme. But my friends, I got lucky they didn't leave me, which would have been— which happens all the time. And would have been very easy for them to do because I mean, they're 16 too. Like they love me, but they're 16. And they all were like, no, Josie's going to be okay. I have one of my very best friends. Her name is Jenna. If you ask her to this day, was it ever a possibility that I wasn't going to make it? She will go into straight hard denial that that was ever even a remote possibility when it was a very real possibility. So it was just those people around me being like, here's what's going on at school. You're going to be fine. We're going to go to dollar taco night at El Porton. Like, it's— it was like, we're going to get you out of the house. And I just kind of adapted their mindsets and the mindset of, well, if I leave, who's going to be there for them? Like, who? Who gets to see them grow? 'Cause it came to, I didn't ever think I was gonna get better. And I was like, well, if I don't, I still get to watch my friends and my family grow. 'Cause when I was 15, my dad and stepmom had twins. So all of a sudden I have these two little sisters and I saw their lives with and without me. And I was like, I will forever know who they are But if I don't make it through this, if I don't, if I give up fully, if mom lets me give up fully, they will never know who I am. And sorry, I'm getting a little emotional. That just broke my heart.

Yeah, I, yeah, right there.

Because it was just, it was, it was just, I will never get to see who they become. And I was so excited for that. I was so excited to see my little brother go from this annoying little kid to this brilliant human he's going to be. I mean, he's still a snarky teenager right now. And some days I just want to throw things at him, but I would have missed everything. I would have missed seeing my sister get married, my other sister get married, my other brother get married, meeting my niece and nephews. It was just, I'm gonna miss so many big things in their lives and I don't want to not be there for them, especially my sister Courtney, who, I mean, she's the only one I'm fully blood related to. I will never be like, oh, these are my step-siblings. Like, we're just family. But like Courtney's been by my side our whole lives and it was, If I'm not there to see her get married, I won't care, I'll be dead. But I know that would hurt her. And I just couldn't do that. And fast forward, I was her maid of honor. But it became not about my mindset for myself, but I can live like this a little longer to see them. I can. I can suffer through this to watch my little sisters learn to crawl, learn to walk, because I was going to miss all of that. And sure, my siblings and my dad would tell them stories about who I was, but they wouldn't know me. And that just— it was very much, I have to be there for them. I have to be here to watch my friends go to college and have all these experiences. Because I mean, I'm 22 now, and I never thought I would make it to this age, let alone being an actual human in the world. Yeah. Being able to be a functional part of society. So you—

the way you said it, you know, you get to be around to watch people grow, it really touched me because I haven't heard it articulated that way. But I— it resonated with me instantly, which is why I'm still crying, because Like, I had to, I had to make those same choices in a sense. Like, I knew I had to keep fighting because I had kids that were dependent on me. And I remember thinking the same thing, like, if I, if I commit suicide, all this horrible pain that I would never wish on anyone that has consumed me will be shoved out on them. That will be my parting gift to them. If I commit suicide, then they get left with the pain, which is the very thing I'm trying to overcome. And so it, for me, it was like, okay, even if I, I can keep going, even if it's just to watch my son graduate, even if it's, you know, even though I wasn't living, I was in a sense doing the same thing as you are. I was like, okay, 'Even though I'm in my bed, at least I could watch them graduate. Even if I'm in my bed, at least I can, you know.' And so those are immense choices. Those—

yeah, it was just the only way I could get through it was to be like, 'Well, I'll miss those moments.' And I couldn't do that to myself. I couldn't do that to them. I couldn't do that to my mom because My sister was in a really bad car accident a few years prior to all this happening. We just have bad health luck as a family apparently. But, and I watched, that was also part of it. I watched my sister also almost die. And I knew what it would have done to me, what it would have done to my mom, to my stepdad, to my dad, to my, like my whole family. I'm this barely teenager in an ICU waiting room refusing to leave because I don't want to leave Courtney in case she leaves me. Yeah, it re-manifested in a different way of, okay, now I'm in Courtney's position and I watched my family fall apart emotionally in the waiting room, so I know what the outcome of that is and I can't, I can't do that to them again. When it was a very real possibility before. So actually seeing it and keeping that in mind of if I make this choice, how it impacts them. And I mean, saying that, there were still days that I begged my mom, just let me go. I can't tell you how many times I told her that because it was too much. And I know now that is unfair of me as a child to ask my mom And of course she was sitting there going, no.

Well, I understand that's where you are, but no, there's nothing fair about any of this, right? I mean, there's nothing fair about any of it. I was going to tell you, I was going to— my next question to you was going to be, tell us about the year you tried to die. For nearly two decades, Invita Medical Center has been leading the way with the latest in personalized treatment options designed for patients dealing with Lyme disease complex.. At Invita Medical Center, they offer a team-style approach and the latest technology regarding treatment and testing at an unmatched radical love and care environment for their patients. Call to speak to one of the patient care coordinators today to learn why hundreds of patients choose Invita Medical Center each year. You can find them online at invita.com. I was gonna tell you, I was gonna— my next question to you was gonna be, tell us about the year you tried to die.

Yes, the year I tried to die. So throughout the whole thing, we, we decided early on in all of our lives that you can either laugh or cry about your situation, especially when it's one out of your control. And we have always picked to laugh. So we call this a specific one year, it was, it was I feel like it was more than one year, but we call it the year I tried to die because it wasn't me like actively trying to harm myself. It was this disease and getting real close to that brink and then coming back. And so my friends, my family were like, no, that happened during the year you tried to die. So you don't really remember it. That's just how we, coped with it was the year I tried to die, which if you say to like a normal person, they're like, what? Right. But I like, I told a coworker about it. He was like, you make it sound like you walked out in the middle of traffic for 365 days and were like, nope, not today. That's not what I meant. It's the year my body tried to kill me. Yeah. So it was just We can either laugh or dwell on everything horrible that was happening. And we were always making fun of my word mess-ups. And sometimes those were harder on me. But when I had my PICC line, I called it my arm weenie because like it sticks out of your arm. It was wrapped up, but I was like, it's an arm weenie. An arm weenie. Arm.

A wingy.

Yeah, like, yep, it would go to the store, run to the store real fast to like Target or something, to run in and just get out of the house. And I could be up and mobile that day, and I'd have someone staring at me, and I would just stick my arm up in the air and wave it around because the PICC line would flop around. It was just little things like that of You found something to laugh about. Yeah, it was how can we make this situation funny and keep our spirits up?

Yeah, that's powerful. It's huge. And I mean, I know because you were a teenager and in high school that a lot of the choices that got made were made for you. But what were some of those choices that led towards healing for you? Obviously comedy is one of them.

Yeah, that's one of the only things that got us all through it, got me through it. I guess the choice to involve my friends in not all of what was going on. Like one of my other very dear friends found out a couple of years ago that I was having seizures at the time. And she got mad at me 'cause she was like, "I didn't know that." I was like, "Well, I gave you select information." as to not freak you out. And so you'd understand it because again, we're 16. Like, I know you have your own lives and compared to what I was going through, your big moments aren't big moments. Like, oh, your boyfriend sucks. Well, I'm dying. So like, I couldn't do that to them. I know you're going through normal teenage things. I am not. But the choice to just tell them some of them and to keep— try and keep them in my life. I mean, at the same time, they had to choose to stay. I had to choose to let them stay. Interesting. Because it is a very ugly thing to go through. And a lot of the times I didn't want anyone around me. I was like, nobody could see me like this. I haven't showered in 2 weeks because I haven't had the energy. And but my friends would be like, we're gonna bring you gluten-free cookies. I'd be like, okay, come over. But it's— it felt like a choice to also keep them informed as much as it was for them to actively be like, we're in your life. I feel like it's a choice both ways because I did shut a lot of people out, and I feel like a lot of us do because we know no one's going to really understand. Yeah. So it's just easier to let them shut us out and us shut them out, even though it sucks and it may not be a conscious decision. I feel like it goes both ways. In. I mean, sometimes it is one-sided, but if you're not trying to still be involved in their life— because that was the other thing, it wasn't always like, woe is me, this is what happened today. It was, so what did he do today? Like, what, what did your boyfriend do today that was so bad? Or how was that test? It was me also being involved in their lives.

Yeah, that makes as much as I could. Yeah.

And then just the I don't know the, 'cause I mean, like you said, a lot of the choices were made for me, but I was, when I, so I mentioned my PICC line, I was adamant that I was gonna get that PICC line. And I know not a lot of people do, especially at the Gymset Clinic, they try and reserve IV antibiotics for like their sickest patients. But our first appointment, I looked at my mom and I was like, I'm getting that PICC line. I just knew. And I also thought like, this is the fastest way to do it, let's do it. But it was, I don't know, the choices to— so I, I know a lot of people study and read up online when they're diagnosed with it. I didn't want to know anything. Like, they have all these great books and these movies, and I actively was like, Mom, don't talk to me about it. I was like, I don't want to know. Yes, I don't want to know.

I believe that. And I believe that that is part of why I wanted to interview you specifically, is because I have found that to be a very consistent theme in kids in high high school. They— I, I know, I know a young lady, and after her diagnosis, it took her almost 2 years to even be able to admit to other people that that's what she was going through, because she knew, like, her mom had gone through Lyme. So they— you've seen, if you've seen people suffer, if you've suffered, you do have to be selective in who you tell things to. Because I have realized there's so many people in my life who if I actually tell them what has gone on, they can't cope with it.

They're just like, what? Like, no. And I—

it doesn't even make sense to them. It like stuns their ability to look at you. I don't know, it just changes the nature of relationships. So I still am learning to not say all of— not tell people who don't get it, who don't understand, because They don't want to know. I don't want to know.

Right, right. My mom went into research mode and I was like, please stop asking me to watch this. I don't want to. I'm not going to. Like, I don't need to know all the terminology. All I know is I'm sick. You make me take these pills at this time, these at that time, and these at that time. I was like, I know what my symptoms are and what's happening to me. That's all I need to know. And half the time I didn't even want to know that. But I learned, I got really mad one day because it just clicked in my head that like, people don't care. Like they would ask me, oh, how are you doing? In that voice, you know that voice? I'm like, you poor thing, how are you? I hated it. But if I said anything other than, oh, I'm okay, oh, I'm fine, you hit them with, well, I've had a really, excuse my language, but I've had a really shitty day. And I can't poop solid. They don't want to hear that. Like, they don't care. They're just like, oh, okay, and back away. Like, change the subject or talk to someone else. So you just tell people like, oh, I'm okay. But last time they saw you, you were walking, and now you're in a wheelchair, so they know you're not, but they don't— they don't want to know what's going on.

They don't and they can't. Yeah, it's so mind-boggling to most people. They're like, what do you mean you had a seizure this morning? You're like, yeah, that's not uncommon for me. Or I felt like I was going to have a seizure. Or, you know, because for them they're like, why aren't you in the ER? And you're like, well, because there's nothing you can do about it.

They're going to tell me that I'm crazy. Or you haven't— have you ever had an absent seizure in just like the middle of a conversation? Yeah. Mm-hmm. Yeah, those are always fun to try and explain. I'm like, I need you to repeat everything you just said. I was trying to listen and then I had a little seizure, but you're not shaking. So they're like, no, you didn't. So you're just— I got to the point where I just like smiled and nod because I was like, I can't explain this to them. I'm not zoning out. It's out of my control. Yeah.

Wow. Okay, so you made the choice to watch the people in your life grow. The people in your life were supportive and helpful to you in helping you to believe that you could get better or that they were standing with you. So as you have come through massive rounds of treatment and, um, have seen a lot of reduction in some of your symptoms, right? You said you're living pain-free at this point. I am.

I mean, other than the kind of lifelong damage that comes with it. I'm— I don't wake up in agony and go to bed in agony and experience the whole day like that. Yeah.

So how has this experience— obviously it's the only one you've had, but how do you think this experience is impacting the way you view things, the way you want to live, how you are looking at adulthood? And specifically, I want you to tell us about your tattoo. Having to overcome social anxieties. So let's start with your tattoo.

And okay, yeah, go for it. Well, I did. So I'm a big fan of Peter Pan, and there's one live-action film that is my absolute favorite, and it was in the early 2000s, I believe. And he always says the line, to die would be an awfully big adventure, but in My favorite version, he also says, "To live would be an awfully big adventure." And I was like, you know what? To live would be an awfully big adventure because my life has been completely derailed and cut short. So when I started to be able to see the light at the end of the tunnel of all of this, I was like, I'm getting that tattoo because I just, I needed it. It was, if anything, another thing to keep me going going because I told myself I wouldn't get it until I was no longer in treatment. And I was gonna get it— it was always in, always in the same place, always next to my PICC line scar is where it had to be. So finally, the moment of truth, and they're like, well, I mean, take your methylfolate and B12 and you'll be good. And I mean, they didn't say like that, but right, I was like, it just dawned on me, I was like, oh my God, I can get my tattoo. And I put it off is the thing. I didn't get it right away because I was so scared of if I get this tattoo and it's back in a month, I've jinxed myself or I've cheated myself. And finally I just came to my mom and I was like, I need you to write this for me. I need you to write out, to live would be an awfully big adventure. And I was making her so mad because I had her write that sentence so many times. And I was like, well, I like the way that that too was written, but I don't like that word. We finally ended up cutting out specific ones I liked and put it on a piece of paper. And my mom and I went to the tattoo shop and I got to live would be an awfully big adventure on my left bicep, right above my PICC line scar in my mom's handwriting.

In your mom's handwriting. That's so beautiful.

It was important to me that it was in her handwriting. I— because I looked at so many fonts and I was just like, my mom deserves the credit here, and she's the whole reason I live. Wow. Because I didn't want to, and she was like, well, too bad. Like, I'm— now she tells me, she's like, well, I have too much money invested in you.

Okay, Mom, that is hilarious.

I mean, that's just how we deal with things. I'll be like, I'll be dramatic and be like, I just don't want to do this anymore. Just like, or I'll be like, oh, kill me over something minor and I don't mean it. And she'll just sit there and go, ah, I can't, there's too much money invested in you. Okay, Mom. Oh, I love it. But the tattoo, the tattoo was a big deal for me personally because I just took on this mindset of You know, it would be a big adventure to finally get to live. Sure would.

Yeah.

Have all these experiences. And now I get to. I have my tattoo and it's— it— because it's on my bicep, it's kind of a little hidden. So it's like my own thing. And you can't really see the PICC line scar unless you know it's there. Right. So I don't have to explain it. They're just like, oh, that's a cool quote. I'm like, oh, it's way cooler than you know.

Mm-hmm. Oh, and then, and then how have you overcome the social anxiety aspect of being stuck at home for years and years, inability to communicate the way you want, when you want? Because that's a— that's something I think almost everyone struggles with. If you have been homebound for X amount of years, it's hard to re-engage and it not be something scary.

It was, it was hard. It was terrifying because it got to the point where all my friends are in college. I've got two of them were still in Memphis. One's in South Carolina, one's in North Carolina, one's in Indianapolis. Like they were all over and it finally came time and I decided I was going to be an EMT, which was just a weird decision in itself because I always wanted to be a baker. I'm an EMT, but I was sitting in the floor of our office talking to my mom when school's about to start for me. And I was like, what if I don't know how to make friends anymore? I was like, I've had my group of friends pretty much since we moved to Carterville in the first grade. Like, I met my friend Rachel in the first grade, Courtney and Jenna at church in the first grade. My friend Allie at church in the 3rd grade and Molly in middle school. So it was just, I was like, what if I don't know how to make friends anymore? Like I haven't had to in a very long time because it went from this organic setting of people you see every day. So you become friends with people in your class, but most of them left me because like your school friends, which I don't blame them for that at all. But I had my friends stick with me and I was like, what if I can't make friends anymore? That was a huge thing for me because I am a social person. And mom was like, it'll be okay. You'll know how to do it. If anything, there's only like 12 of you in a small classroom. Somebody has to talk to you. It's like, okay, mom, thanks. But what if I can't? And For me personally, my whole life my mom has told me that if you tell me I can't do something, it's going to piss me off and I'm going to turn around and do it just because you told me you can't do that. So she was like, well, maybe you can't make friends. And then it turned into, I can make friends. I can do that. And I mean, she is— she's a licensed professional counselor. She's legitimately reverse psychology me. I was like, I can make friends. She's like, well, I mean, maybe you can, maybe you can't, who knows? I was like, all right, Julie, I know what to do.

Calling her by her first name, she hates it.

But I then go to my EMT class, and there are only about 12 of us in there, and it was just kind of an organic thing. And that first day was so nerve-wracking for me. Because I do have little speech impediments and it hadn't bothered me in the past, but all of a sudden I'm like, these people don't know me, I don't know them. Yeah. Like, how am I going to do this? How am I going to— are they— or is everybody looking at me? Is there something on my face? Is there something on my clothes? It was just that normal endless train of anxiety. And then I started making friends because it is a very like social class that I'm in because we all be trained to be these EMTs. And so you have to like run scenarios on each other and take everybody's blood pressure and all this other things that it was, it was forced. Yeah, to be like, you're gonna interact with each other instead of a like a lecture hall setting where you don't have to talk to anyone. So for me That was the best thing I could have done because it literally forced me to talk to other humans. And then I was like, okay, I can make friends. I can do this again. And then I got my job and you're given a partner for 12 hours in a, in a small box, essentially. So you're again forced to talk to each other. And the anxiety was always still there. But slowly and surely, it's kind of shelled away from me to where I'll just go run to the store real fast by myself. No big deal. Whereas before I was like, somebody has to to be with me or everybody's gonna stare at me. And I mean, I'm not gonna sit here and say my anxiety is completely gone when it's not. You put me in a small group of people, I'm still gonna be freaking out on the inside.

Yeah.

But you throw me in a big crowd or you throw me in at work, I'm fine. Like, I'm not like fine fine, but I know I can get lost in that crowd. No one's gonna pay attention to me. At work, I know eyes are on me because I mean, I'm doing stuff, whether it's I'm moving a patient over or whatever else, but I also have my partner there and I have a really great partner. He's a wonderful man and he's just great. But he and I will just give each other these looks and we're like, well, that nurse is a brat or whatever. And it was just that underlying communication that we've developed That has also helped me because I'm like, all right, I know he's on the same page as me. Who cares if they're looking at us? But it was hard getting back out into the world. It was hard to try and start dating.

That was a weird experience. Really?

Oh, I bet. Yeah, because I was like, I want to be— I want to have someone, so I'm gonna go through this dating world, which kind of sucks, to be honest, but I was like, I don't know how to meet people. So I downloaded like Tinder and was trying to talk to people and I was like, I don't know how to start conversations. Like, I don't know how to do that. But I— it was just kind of a trial by error. And I mean, in those situations, if you do something that you can't get over because you think you've embarrassed yourself, you can just delete them. I mean, you can just— it's like a factory reset. I also honestly feel like that helped because it was practice of how to talk to strangers.

Mm, yeah, interesting. But it was weird. Yeah, it sounds like you're just walking it out, right?

Like, like, yeah, it was just— it's like trying to learn how to ride a bike. You're gonna, you're gonna crash and burn a few times, but you'll get it. Like, it's, it's okay to hit the brakes too hard and fly off. Like, it's Hmm. You have this room for mistakes for once, whereas with your health you haven't. Like, I still snuck food because I'm a teenager and I wanted blueberry Pop-Tarts. But like, I realize I'm gambling with my own health with doing those things. Whereas talking to people, I realized like, if they don't like me, they don't like me. That's okay. There are so many other people and like having a bad experience with another human isn't going to kill me.

Yeah, especially when after what you've already been through, right?

I just came out of it like, well, you know, you're not gonna put me in my bed for 3 hours because I tried to walk up the stairs. Like, it's a different— it's a completely different experience, and it is a hard thing to overcome, but it's, it's a good different to be able to have those trial by errors again.

Yeah, I believe it. So, Josie, what would you say to other high school students and other young adults who are battling this?

I know it's hard. I know that there seems like no end and that you feel like you've been robbed immensely because everybody always tells— all the movies, all the TV shows, old people— they tell you like, this is the time of your lives, this is when you need to be doing this. And you get gypped. Like, especially now with all the corona COVID stuff going on and all these kids being forced out of school— I know that has nothing to do with Lyme, but I feel for them because they've had that experience taken away from them, which every teenager who's been pulled out of school for Lyme knows that feeling. Yeah, because that choice was taken out of your hand. And I think that's the best way to relate that situation to people who aren't sick. Of you have no control. And to the people that are sick, I'm sorry you have no control, but you'll get it back. You may not know how to handle it again, but you will have that control back of, I'm going to Sonic, nobody can stop me. Like, you can make your decisions again. And for me, driving was a big thing because I couldn't— like, I turned 16 and could drive a little, and then I got sick and couldn't. And so that first time I was like, you know what, I'm going over to Jenna's house or I'm going over to Allie's house was a big thing for me. 'Cause that was my sense of control all over again. I'm in control of the vehicle. Like I'm in charge when you have no control in your life. So I guess that's the main thing. If people that are sick take the small wins, you'll be in charge again. Because that— I mean, that's part of what I think you have to hold on to, of it's chaotic now and it's not a chaos you're in charge of, but it'll come back.

It'll be okay again. Awesome. Well said.

And I mean, well, thank you.

Yeah, yeah, there is, there is another side to this, but it's hard to know that.

It's hard to see it, and I know it's hard to see it And I mean, honestly, once you, once you have it, let alone insight, but you are to that point where you can be a human again, I always say that I'm like, I'm not a human today. Well, you can be a human again. It doesn't feel real. Like it took me a long time to be like, this is my life. Like I'm okay. And there, and I don't know, it was just a huge deal. To be like, my life isn't filled with pain anymore. Oh my God, now I have to go to college. What am I gonna do? Like, it was, it was new worries, but it was normal again. And that felt so weird.

It felt unreal to have normal worries. Yes. Yeah, yeah, I get it. I would always tell myself, like, this is what normal people do. Like, it's okay. This is what normal people— because you lose that normality, you lose that sense of normalcy. And so yeah, you do have to choose over and over again to heal and come out of, come out of all of this. You do.

Like, you, even if you want to give up, you have to find something to hold on to. For me, it was for my family and for my friends. But if for you it's your dog, great. If it's to see the end of that series on TV, great. You have to find something. Yeah, I mean, come on, we watch a lot of TV. Like, I can't tell you how many movies I've watched, but it's just very much finding something just to get you to wake up the next day.

Find something.

Yeah, and I mean, that's the harsh reality of it. You gotta find something.

Thank you so much for being with us today and giving us some of your valuable, valuable energy. I really appreciate it.

It really was my pleasure. It was— my mom's been bugging me to talk about it because not many people that get well talk about it. And I know she was on earlier this year, and I was finally just like, you know what, I can do this.

Well, thank you for being brave.

It really was my pleasure.

Thank you for being brave. Thank you for having me, giving a voice to kids and young adults who may not have a voice. And so sometimes we have to borrow strength from people who have been through with something. I know that that's what these podcasts do for people, is it empowers them, it gives them hope, it enables them to have strength, even, even in a moment, right? Sometimes you just need strength for a moment, but those moments add up. So thank you. Thank you.

Thank you for having me.

Hi guys, I want to let you know about a book I wrote called Little Bite, Big Trouble, and I'm going to read a review that recently came in. This This is from Carolyn, and she says, "Thank you so much for writing your book. It has become the means by which I have explained Lyme to my 4-year-olds. They ask for it to be read as a bedtime story over and over again and love that the mama birdie does yoga and juicing like their mommy. I can't thank you enough for writing this book. It has helped my family so much." You can find it today at Amazon.com, Little Bite, Big Trouble. 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. Kay, Lincoln?

Kay.

The medical information on LionVoice is provided as is without any representations, warranties, expressed or implied. Okay? Okay. LionVoice makes no 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 health 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, 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 podcast. Got it, Lincoln? Got it.