She Brought Me Into This World & She Kept Me Here

In this episode, Cass finally gets her mom, Lisa, to sit down and chat about the journey they have been on for the last *almost* 11 years.

This is a long episode, but worth the listen to get the full picture of what life with a child living with a chronic illness is truly like. We cover doctors, trauma, hospital visits and lots of laughs and tears were shed.

You will also hear us mention Under Our Skin several times, and if you haven't watched yet, here is your chance.

And our song recommendations are here:

Her Diamonds- Rob Thomas

Happy Days Are Here Again/Get Happy- Barbara Streisand and Judy Garland

See the full transcript below.

C: Hello everyone and welcome to the It goes without saying podcast. I'm your host Cassidy and I'm here with my favorite guest of all time. This is my mom, Lisa. Say hi, mom. Hi, mom.I have been trying to get Lisa to do the podcast with me since I started the podcast. And the reason I haven't had any podcasts in the last like six months is because she's the only person I wanted next and she wouldn't do it. So thanks for finally agreeing and letting me and Taylor Force you onto my podcast.

L: You're welcome.

C: You have so much to stay because you've been here for the last almost 11 years literally every step of the way lease. Yes, I certainly.Okay, we're gonna are gonna start all the way at the beginning. I'm gonna give a disclaimer that this podcast is probably going to be long, and it's gonna go all over the place. So strap in tight. Okay, so flashback May of 2014 When I started complaining about my headaches, what was your first reaction?

L: I mean, I believed you, I just didn't know what the heck it was. And so that's why we went to the first doctor, which was our pediatrician.And he suggested we go to we go to first neurologist who went to neurologists first gen ologists for children's. Well, not actually, but they are ologists. Yeah.Who was supposed to be this well, renowned neurologist, and we went in and told him about the headaches and only thing he wanted to do was put you on an antidepressant.And I, you were 14. And I said there's no way that's happening. And I asked him why we would do that. And he said that we he wanted to treat the house, what was the worst he wanted to do treat the symptom, not the not, but not figured out what was wrong. Like he didn't do any testing didn't want to do anything. He just wanted to put you on medication. And I was not ready for that at that point.

C: I remember that very vividly. And I remember, you like going out into the hallway, like afterwards, kind of, I think to say something to him or the nurse or something because he literally just came in I don't even know if he like touched me or anything. Yeah. And he just said we're gonna give you the medicine medicine. Yeah. And then I remember after that, you call the the pediatrician backup. And that was when you went into full. My, my advocate. For the first time I had to close them many times, yes, I yelled at them. And because they said there wasn't anything else they could do.

L: And I was livid. And I wasn't at that point. I knew it was time for me to start taking control of this and try to figure out what else we could do. And what was next. And next was when you want me to the ear, nose and throat doctor? No. But how about that other neurologist?

C: No, we didn't start going to that a neurologist until a little while later. You hooked me to the end, because you were like maybe it's a sinus thing. Because you were doing Dr. Google and you just started I remember this very vividly of laying on Taylor's bed crying. And you coming in. And you just started googling this happened multiple times. This time was when you were like I think maybe like maybe it has something to do with your ears and your sinuses. And then you brought me to the ear, nose and throat doctor. At that point was when my neck started getting stuck. Right. And then he's the one that was like, I think you should take her to an orthopedist.

L: Right, right. Yeah, he Yeah, that's right. Because your neck, you were having so much neck pain.That the headaches were so bad. You could barely lay on the pillow. And then it got to the point where besides not being able to lay down you couldn't turn your head. So Bo, you went to the ear, nose and throat? Yes. And he said he thought maybe it was something orthopedic. So then we went to the orthopedist. And they did X rays and told me that you had arthritis in your neck and I thought you're 14 How in the world? Do you have arthritis in your neck? So and they again, I don't think they gave us any answers as to why this would be happening to you and what we could do about it. And so that's when I Googled again. Yeah, and that was the first time that Lyme disease came up. Because I looked up and literally Googled, why would a 14 year old have arthritis in their neck and Lyme disease was the main thing that kept popping up. Yeah, and I think I don't remember. I feel as if you made me get tested from the pediatrician but that was when we also went to Rheumatoid Arthritis. The rheumatologist guy. Yeah, well, the pediatrician had done the Lyme test. And of course, you know, according to CDC standard, you didn't have Lyme, although you did have a band or two that was positive.

C: But we didn't know at the time to question that. That's true. Yeah, yes, that's right. So so yeah, so then we went to the, the first rheumatologist rheumatologist was that crazy guy over by? Yeah, all right. Yeah. Yeah, he was. He was nice. He just wasn't Hey, child, one. And he and that was also I think, the first doctor that we experienced, paying out of pocket. I don't think he took it. You know, he did not take insurance. I know that. I remember that, unfortunately, very well.

L: So yes, that was the first time we had to pay to go to a doctor. And he decided that you had the Ankylosing Spondylitis after testing, which is a horrible, horrible disease, if anybody's ever heard of it, and it can make you go blind. And basically, you're going to fuse together. So it was this horrible, horrible disease. And we were completely panicking about that. But at least we had a, a some sort of answer, we thought at that point. And that's when we started probably, I'm sure on the first really doses of some serious medicines to Yeah, he had me on he had me on some pretty big medicines. And then that was also I think, the time when we started doingthe other neurologists for the chronic tension headaches, because the headaches didn't like match up with the Ankylosing Spondylitis diagnosis, because I remember him giving me medicines.

C: This was in the summer. Because this all happened in the summer before my sophomore year of high school. And this was when I went, we I think we're getting ready to go to Deep Creek. And he had given me a bunch of medicines. And then the neurologists had given me that one medicine. Remember, I had to take nine of these pills a day. Yes, that was all at the same time. Yeah. So that was the that's when we probably first got our first big pillbox that we had no idea would be something you still to this day care. Yeah. But yeah, so that's right. We went to the other neurologist. And she asked, that's right. She she's the one who said chronic tension headaches. Yep. So yep.

L: So she had you on some medicine too. But meanwhile, none of it was helping really, and more symptoms kept coming out and things just that was when the art rolling downhill, the tremor started and stuff.

C: And I remember after I had been on that medicine for a while, like, and we had no difference was when you called me. I was at my friend's house, and you called me and said that you were coming to pick me up to take me to the ER, because you had been talking with our friend who is the doctor at the ER that said that they thought that I had Lyme, and we're going to help they were going to help us. Yes, yep.

L: So you went to the ER, and they gave you a large dose of antibiotics, because in hopes that you would herx which for those who don't know, Herxheimer reaction is I'm sure it's not just for Lyme, but when you start taking antibiotics for Lyme disease it it starts killing off the Lyme, and you start actually feeling much worse. Because it's killing it off. It's like last hurrah. Yeah, so that's that was the hopes that that would happen immediately at the ER, but it didn't. But she was that was also when they did the spinal tap. Just because that was when they did like all the tests. And one Yeah, they did all kinds of tests for everything. And then they were like, I think we went there more than once, actually. But yes, but then we did go into and they did Yes, they did a spinal tap. They did all kinds of blood work. But again, you know, the tests are not good for Lyme, and they don't show a lot of times what's really going on. So we never still after that got a definite answer. And I think at that point is when we started talking to people who had Lyme, and they started recommending some doctors and I first we had Georgetown though too. We did have Georgetown in there too.

C: Yeah, but when the er Yeah, we because we went to infectious disease. Yes, we were sure you headline. They didn't help us. They said you do not have line. They talked about TB at one point. I remember them talking about TB like they wanted me to do the TB test and stuff and we were like why that I don't have any of those symptoms but they just regressive just trying to find something. Yeah.

L: And then we wind up, wound up going to Is the rheumatologist at Georgetown and we were going to himfrequently driving down to Georgetown and he just kept giving you medicine and he still thought you had the ankylosing spondylitis. And during that time we found out we knew somebody who had actually did have ankylosing spondylitis. And I talked to her mother and she said, get an MRI, get an MRI, get an MRI. That's the only way you can really tell. And we kept asking for the MRI and we kept asking, no, he didn't want to do the MRI. And when he finally did it, more, lo and behold, it did not show that you had ankylosing spondylitis. And at that point, we had decided we were going to go to our first Lyme doctor, and we had an appointment made and I can remember the last appointment at the rheumatologist when we found out you didn't have it. And we both started giggling because what he circled instead of Ankylosing Spondylitis was fibromyalgia. I wrote my, okay. Lyme disease. Yes, the go to when they can't figure anything else out and you're in pain, you have fibromyalgia. So we literally I remember walking out showing you the paper and saying, Well, now I know you have Lyme disease, because look what he's circled. And it's exactly what you said. I remember that so vividly. That was the last time we took our trip down to Georgetown. So and I remember I don't know why I remember this. But our first Lyme appointment was in October. Yeah, it was going. So from May to October. Oh, and in between there. Didn't we also go to a cardiologist? I think. I think a cardiologist might have been a little bit later when you started getting into your well, does she have Lyme faces, which we'll get into. But yeah, but there had been numerous doctors before we went to our first Lyme doctor.

C: Yeah, because I don't think I had the heart stuff as bad in the beginning because it was like, I started off with a headache, then it went to the joints in the neck. And then I think by the time that we actually started seeing the Lyme doctor, I had just started getting like the tremors. And I always had the fatigue, but it was like getting worse, always having Yes. But then like once I started treatment is when a bunch of the other symptoms started coming out which we came to learn was because I had different co infections, right? Because then I had the bar or I had the Vizia first for a while we didn't know I had any other co infections for like, I feel like two years into your journey of such, which is crazy. What was your first your initial reaction after leaving our first Lyme doctor appointment? I think I even though I knew you were really sick. I was definitely relieved that we had an answer that I thought was really the right answer. And although the doctor was a little crazy.I felt like he knew what he was talking about. And I thought okay, so now we have the answer. And she'll be better, you know, time. Ha ha ha. Do you remember the homework that that doctor gave us?

L: Yes, we had to watch a movie. Yeah, we had to watch under our skin, which if you anybody out there listening, please watch that movie.It was the most eye opening, horrific, scary. just heartbreaking movie, but also at least gave me some insight as to what we were about to embark on. And that was not going to be a quick fix.

C: I think that we both went into my first Lyme doctor appointment with the thought that like, Oh, yes, like, we're gonna get on some medicines, and we're going to be fine. And then we went home and watched that movie. And we quickly realized we were in for a very, very long and hard journey. Because I also remember, we didn't we had to pay out of pocket for this Lyme doctor.

L: And that No, at first we didn't. He was he will he wasn't the insurance that was in the insurance, which was so exciting that he has an insurance and we didn't know that most Lyme doctors were not covered by insurance at that point, because this was the first one and he was recommended to us. So we didn't know about all the others yet. Yeah. So yeah, he was covered by insurance. And a couple months later, he was beingtargeted by the the CDC and insurance companies. And so he was going to have to stop taking insurance, which is when we also left to because we had been doing treatment for like three months. And we were like I should be feeling better by now not knowing how long this would take well, and I felt like every time we went, he switched you to different medicine, which again, was what most people do, but at that point we didn't understand it. We just didn't know why. You weren't on just a medicine that would fix you. And it was just so overwhelming at that point. I mean, his we're all preschool options which were covered, thank goodness, most of the things he gave us, but so at the beginning, we didn't realize what this was going to wind up costing and the burden it was going to put on us. But yeah, he was probably a good place to start. I think I don't regret that. That's where we started. I feel like as much as this journey was horrible and years and painful and costly, but I think it was we that's how we learned. So I don't, I don't regret that we kind of did it the way we did it. But I wish she wouldn't have been so long.

C: Yeah, but he was a good one. And then I'm trying to remember where we next you took. I know. Next, you took me to the homeopathic doctor that we went to who was also not covered by insurance, and it was $1,100 for the first. Yeah, the first appointment. And I remember we brought dad with us to that one because he was such, why are we paying that much? Yeah, it was such a goofy thing, which we all kind of thought, but we wanted to try it anyway. We've been recommended it to. Yeah. And he? Yeah, because it's right. There was a teacher at your high school who recommended him and she had had Lyme, and she swore that it cured her and her kids were never sick because they went to this doctor. And you know, it was all hunky dory. So we thought, oh, that's the one now this is who we need to go to. And yeah, he was quite convincing. And yeah, we walked out of there with lots and lots of homeopathic sprays, I can remember taking a picture of the pantry with fire. I think you had like 15 There was like store sprays that I had to do three times a day. Yeah. And they did absolutely nothing. I did it for like three months. And we kept having to go back. And it was so much money to get the little bottles to I remember. And then just finally, I just was like this. This, isn't it. And that was when we had found out about the other doctor who actually did take insurance because he was not an official. No, no, yes, yes, yes. Yes, you're right, because he's one to recommend us go to the next one. Yes. Yep. That's right.

L: So yeah, so then, somehow we heard Yeah, and and as this was all happening, we started getting involved in the Lyme community, which is, thank goodness, I don't regret that at all, either. Because we learned a lot. And we had a lot of recommendations. And we started to, you know, realize that everybody was different and how they were treated and how their symptoms were. And that, you know, there was no rhyme or reason to any of it. So we were learning a lot through all of this for sure.

C: That was the first time that I was fully depressed, too, as well around that time period, because that was the spring that was like it had been a year since everything had started. And that was when I started my Facebook group. And you started yours too. And I can't remember if it was, you were like all start one if you start one, or how we both decided to do it. But we've been in charge of these Facebook groups for the last 10 years. So mine, mine is just for it was teens with Lyme disease, but then we all grew up. So now it's teens and young adults with Lyme. And it started with like, 15 of us. And now it's over like 550 people. And your group is called parents. And it was parents of teens with Lyme. And then it was parents of teens and young adults with Lyme as we both had to keep changing.

L: And I mines got hundreds I haven't been great about keeping up with mine. But but in the beginning, we were on it all the time all the time. Yeah. And I do you know, people still talk to each other on there. It's I feel a little removed now because we're so much further into this journey. But you know, occasionally I'll I'll post some stuff in there and just try to give people little boost of confidence to tell them it's, you know, been there, done that and that don't give up. But yes, that's right. So we both did that.

C: And then I don't remember how we found out about this guy, but I think it was someone in one of the Facebook groups had recommended because then there's also like a Maryland Lyme disease support group that we were part we were a part of several support groups on social media. And you were told that you started going to some groups as well. That was when you started doing some stuff. Oh, yeah. I was talking to the Frederick people. That's right. i Yeah, that there was a Frederick there was nothing in Montgomery County at the time, but there was Frederick Maryland group and yes, I went to a couple of their meetings and was talking to some of the people there. And maybe maybe one of them recommended him so this this guy was local not far from us at all and wasn't officially a Lyme doctor. He was just a general practitioner, but he was very interested in Lyme disease and wasHe was studying it a lot and was was, you know, working with a lot of lyme patients. So we started with him. I remember that. Yep, that was, I was 15. And you essentially let me be a guinea pig for this man.

L: But it was one of like, the best decisions that we made. Yeah, he was awesome. I have recommended him many, many times. And he now I think, just as lime. But he, yeah, he and it was I think it was helpful because he, you know, he didn't try the same old thing. Like some of the other people were always doing the same things. And since he was new to it, he Yeah, you were a guinea pig. But at this point, we were like, What the heck, nothing else is working. And he was covered by insurance. So Exactly. Yeah. It was a rough, rough office environment. It was not not good. I don't believe we have ever found a Lyme disease doctor who has a good office. Officer. Oh, yeah. I think that they're all run. Yeah, they're all run very poorly. Yeah. Which I understand. They're probably under an enormous amount of stress. But so that was, I was not used to that. But at that point, I was willing to yell at anybody.

C: We've been through and he is the one that discovered well, you discovered my Bartonella. Because I had been changing. We're going shopping. My pants came down and you saw I had tiger stripes on my butt cheeks? Yes. And you said, What's that? Yeah. So we took a picture of it took a picture of my dad, and he said, huh, and I remember all three of us. He put his laptop on the patient table in his room, and we started googling. Like, he literally pulled up Google. And that's how we were like, Oh, you have this thing it looks like and it was Bartonella, which is another tick borne illness. And that was when he kind of said, You've graduated from my care. Well, and it was also because I know what the main thing that was the neural neurological, you were, you were having a lot of neurological issues at that point. And he that's when I say, and you were young, he didn't do a lot of kids either. He really were too young. He was really an adult practice, but he took you. But I remember actually him saying, I don't I don't feel comfortable dealing with neurological symptoms. And I think you need to go to an actual I'm literate Dr. Again. So what do you remember my neurological symptoms being because I feel like the only big neurological things that I remember was when I was in college, but I like in high school, but I think that's because it was memory stuff. And I don't remember. I do remember. Like I do remember a couple of times being in the shower, in high school and not remembering if I had just washed like my hair or my body or something and doing like you're telling you that like I was like, I just think I washed my hair like four times because I don't I remember that.

L: Yeah, I think a lot of it was memory. I mean, you were still the headaches never ever went away. I think you just for 10 years had a headache. I mean, it just was that was a big thing.I mean, you had the tremors that was you know, there was just a lot of weird little nerve things happening twitching.I think you know, he was I think a lot of it was because you were young too. And yeah, like, was concerned. He didn't want to keep playing around.

C: I also think this was when I started having my emotional issues. I think this is one of my Lyme rage started to, because it was a couple months after that was when I finally when I went on birth control for that. So I think that it was also like those were starting time. Yeah. Together. But that sounds at that time was when I was going into my junior year of school, which I think like my assault, what do you what how do you remember my sophomore year of high school? Because I don't do my description? Yeah, I think at all and I was working trying to work full time still at this point. So dad actually took a lot of the brunt of of your issues at home during the day at that point. I remember, in high school in my sophomore year of high school, every single morning, my alarm would go off, the very first thing I would do would be call you and say or call you at work, even though dad was down the hall and I would call you and I would say, Mom, I don't I can't go to school today. I'm too tired. And most of the time, you would just be like, Okay, go back to sleep. And I'll have dad, like come and get you in a couple of hours and see if you can go in then. And then you'd call me in a couple of hours. And I'd say Mom, I'm not going in today. You would just say okay, but then sometimes you would be like No, you need to go to school. You need to do this Dad, you would call Dad you'd hang up on me. You'll go call Dad can't make him come get in and get me. Sometimes I would go like he'd get me up like he would invite me up. I mean, he would literally physically lift me out of bed because I could not lift myself up out of bed. And I would cry the entire time that I got dressed. Sometimes I would go to school. Sometimes I would cry so much that he would let me say most of the time if I actually ever woke up on time and like felt like I could go in for my first couple of classes, I would go in and then I would call you even though you were at work a half hour away and dad work from home, I would call you at work and say, Mom, I need you to come pick, like I need to go home. And that would be like after being in school for like three hours. And I think my sophomore year of high school was when my final quarter, I missed 29 days of my first period class in like the fourth quarter or something it had said on my report card, which it was ridiculous. It was the craziest thing. And I don't remember if we had already got me my 504 plan or not at that point, I think I think we did that for we did it. So you had it for years. I think it was senior year, I think yeah, I had the abbreviated schedule junior senior year. So I think you might have got me my abbreviated schedule for like the last like my second semester of my sophomore years when it started me. Yeah. Which was also a funny day because I remember I did not go to school that day, we had to go have that meeting. Like I literally you brought me to school in my pajamas. I went into the meeting room with you. And then I walked right back out of the school and went home. Because just like I was awake for a total of like, an hour or two.

L: I think I just know, yeah, you've spent most of your life in bed. That's where you are for a good portion of your your day and night, every single solitary day because you were just exhausted all the time.

C: Yep, I like my sophomore year of high school. When I think about it, it's in my room. That was when we got darkening curtains in my room because I couldn't have too much light. That was when I started sleeping with an eye mask because they couldn't have too much light. And I would lay in my bed all day. And I would sleep. If I was awake. I would normallywatch a movie in my room laying on my body pillow, Fred, remember Fred?I would cry most of the time. And if I did get up like I think it would I don't even remember, like sitting in the living room very much during that year. Like I just remember being in my room. Yeah, I think we're mostly I don't remember. Any food things at that. Like, I know I ate food at that time. But I don't. I think I mean, I think you started doing some of the, like maybe gluten free at that point where I started being gluten free a year into me being sick. So yeah, like towards the last half of my sophomore year of high school, I became gluten free. So I started with some stomach stuff and gut stuff. And I we were just treating that I think as like in the beginning as I was doing probiotics remember I had the probiotics ahead of me in the fridge. And we used to have to go to Vitamin Shoppe all the time to get them super special. And then I um we went originally I went gluten free because we had seen so many people and talk to so many people with Lyme that said that I should be gluten free because like the line feeds off of it or whatever. And it was my with my pain because I was always in so much pain. And I remember I did it for like two weeks. And I said this is stupid, I'm not going to do it again. And it wasn't until we were at in the doctor in Virginia, when she yelled at me that I finally went gluten free. So that was once the doctor said he didn't feel comfortable treating me anymore with my neurological stuff he sent us to Virginia. And that was when we started on our two year long journey with that doctor, who we hated at the time. But I've grown to love her very much and love what she did for me. But that was what what do you remember about when we first started going to that office? Because I think that was when we both kind of realized, wow, this is we're like in it now.

L: Yeah, yeah, I remember. I remember. Just first of all, the schedule of just trying to plan for Dad would bring you to my office so that we could and we make late last appointment of the day at their place. We drive from Rockville to Virginia. We'd go see her most of the time we left there and you start crying because you were happy that you weren't fixed. And then we would travel almost two hours in rush hour to get home and seeing and open the windows and that's on the Sing along along started. But what I remember I remember with her I always felt a little bit like she was condescending. She was so smart. And when she was so many dogs are words. Yes. She she just she spoke way above our heads. But we didn't question it. But and there was a lot of a lot of different medicines into.

C: I remember that first appointment was when they took 15 vials of blood and I remember us, me just making eye contact because remember, she had to switch from one arm to the other. And we both just looked at each other like would Wow, what's going on here?

L: And that was one where you would also um Have to do the little questionnaire before you went for each appointment to which was also again, another new thing that it was like talk you realizing what your symptoms were and how you felt. And that was that was new, you know. And that was helpful because very helpful. Yeah. Because we added also let you see when you started to actually have progress, we actually saw that. Yeah.

C: And I think she was the first person that ever explained the chronic Lyme to me that really, she said, she was the person that said that based on my symptoms, that she thought that I had got sick, like if I if I was bit by a tick, which I'm not convinced I was, I was by the tick, I probably was bit when I was three or four. And that my symptoms and manifested for 10 years until I was 14 until it came out because of how severe they were when they came out. And I remember that that part was when I was kind of like, Oh, that makes sense. Because I knew I remember I would get frustrated a lot because I knew people who had Lyme, but they had acute Lyme. And I didn't understand that there was I didn't fully understand how that worked. And when she explained that way to us that helped. And then she was the one that said, I remember she asked us at one point, and she had assumed that I had been gluten free. And when I said I wasn't she kind of just like stopped, look back and she said, why are we doing this then? And I was like What do you mean? And she said, why are we doing all these medicines and stuff if you're not going to eat the things she's like, because then the medicine will be killing it. But then the gluten will be feeding it so it's just not going to change at all. Right? And that's when it really hit and that's when I went gluten free and sugar free for the first time. And you decided to go sugar free with me. Yeah. Didn't work for you. You're cheating in your car with your good and plenty.

L: Yeah, yeah. But yeah, that was that. That was we tried a couple of things while we were there. You remember, she used to do the cocktails, the IV cocktails. We did that a few times. It was supposed to help you to feel better. We try that thing they put around your neck that time I have no idea what that thing is called.

C: But I think about all that time because I'm like, I have like physical trauma and my body from that. I think comes it just like freaked me the fuck out. And it was like the noise I can hear the noise it makes and it just like makes me hate it. It was realistic. And it didn't do anything. No, it didn't but then she is the one who I think I saw her for two years and she's also the one who explained the onion to us. Yes, she said that Lyme disease is like an onion and you have to peel back layers at a time. And so like you peel back the the BZ layer and then you see that you have all the Bartonella layers and then you can peel back that layer but then there could be another Vizio layer or there could be another layer and so that mindset I think helped me a lot kind of understand even if something was better something else might not be and yeah, it was it would take time. Yeah, I think yeah. Yeah, but in between there I know there was definitely times where I thought maybe it's really not like a mess or something else going on and I just wanted there to be a better answer than like you did. You did so much. And I I think I always like knew, I remember like even when they were doing the spinal tap on me in the ER, before we had a diagnosis of anything I just like let you have your time because I was like I know that she needs to do this for her to wrap her head around it because you just wanted me to be better so much better.

L: Yeah, and I knew like it was killing me but like it was killing me way more because I'm your baby and I couldn't fix it makes me make you feel better and I can remember so many times you crying and me just laying with you and crying to you because you're both so helpless. Yeah, because I couldn't make you feel better not so mom's job and I couldn't do anything and I didn't know what was wrong and I didn't know how to fix it and I didn't know who to take you to that could fix it and even the doctors who who knew about it weren't fixing you quick enough for me so and then just knowing all the things you missed out on during all this time you were playing you know you were you're doing sports you're soft I mean your freshman year and you couldn't do sports she couldn't go out with your friends you didn't do anything you all the fun things of high school you missed all of it. I remember the one dance you went to that you stay to for like a half an hour at it and came home after all the pictures in the pretty dress and you know it was just constant it was just it I just didn't know what to do to make you better and that was so hard.

C: But I greatly appreciate you sitting there and crying with me. Because it made me feel like one like to know that you were struggling to made it okay for me to struggle as well because I always felt like All around other people, I would always wish we talked about this, like, how are you? And I just say, I'm fine. But then you you would be the one. Like if we were somewhere and someone asked me how I was doing and I would say, I'm fine, you would laugh and you would explain to them No, she's not fine. She has this, this, this, this this, because I just felt like I couldn't do it because nobody really neat, like, wanted to hear it and things. But you were the one that was always like, explaining them to me. And you never you kept looking for the answers and things which so many kids don't have parents that do that, or believed in them or like, let them sleep through high school. And you didn't let me sleep through high school. I got straight A's in high school. I did all my work. Yeah, there were times there were times though, that you had to type for me. Do you remember those you type? you typed up some of my essays for me? Yeah, I would literally like you were my like ghostwriter. And I would sit there and I would speak to you and tell you what to write. Right? And you would have to do that. And I'm out of high school now. So I can see this. But there were times when you had to fix what I was saying. Because my remember that I like my brain. Remember, I would fumble over words like I would have to fix them for me because I physic like, I didn't have the vocabulary anymore to be able to articulate what I was trying to say. Yeah, yeah, it was it was rough. For sure. It was very, and I remember you like when I was able to do things. You also like you would let me like I remember at one point, I think it was dad that was like, Why did I not go to school, but I could go to the football games, right? And you said, because I don't get to do anything. And like if I feel what because you understood that it literally was like, one minute, I could feel one way the next minute I could feel another. And it was just totally by chance how I would be feeling on some certain days. And you would let me because you and I can remember, one of the funny thing I remember my best friend. And we they were over and we're in the basement one day. AndI remember like they came in and I think you saw them or something and said hi. And then you texted me or something and said you didn't feel good all the sudden, you know, it would just come it would just hit you like a brick wall. And you were like, I'm going to bed I feel awful. And you came down to say good night. And I remember I used to say that you look like death. That was my big thing to say. And after you went upstairs, she looked at me and she said my god, she does look like death. I see what you're saying now. And it was just like your whole you know, your skin color the circles under your eyes, you would just your whole you know, so you could see it. It was physical besides, you know, internally it was external people could actually see a lot of times how horrible you felt just yep, I especially was very in tune to it. So I think I would know when when it would hit you for sure. Yeah. And I remember we also like that was when we started really utilizing Spoon Theory of like, I knew if I was going to be going to school or something one day, like if I would if I knew I had an exam or something big coming up, like I would not go to school the day before because so I would be able to go the next day because I knew that like I needed to preserve my energy to be able to get that done. Right and stuff like that. And we would kind of work my life around that. Which was crazy. And I remember it was senior year and I remember the summer before senior year. I felt like good. I think that was when like I started nannying, and I was driving, I was trying to drive drivers fell my drivers stressed two times. Three times a chairman there. But um, and that I was feeling okay. And then the beginning of senior year, I was doing good. Like I started, I was going to school, but I also had the abbreviated schedule because you and dad have all the pool in our small town. And you got me so that I was able to sleep until I didn't go into school until fourth period. I don't think I didn't have to. Because I asked I think it was 10 o'clock. Yeah. And so I got to sleep in, which helped a lot. I would still miss a lot of days, but it helps. And um, I would like do the football games, I would do the student section and stuff like that. I don't remember when it started going downhill. But I just know that that was when I realized like every fall, I feel like my body is very seasonal. And that was when it started going down. And it was right after Christmas that year when I like before Christmas is when I started asking you to get the PICC line. Because I just had known so many people who had a PICC line. And you were so adamant that you did not want me to get one because you didn't I don't think you wanted to accept that I was that sick that I needed it. Yeah, but then it just is a scary thing to do. I guess a really scary thing, which is another thing with me like I don't it was what I like I want it I do it again in a heartbeat. Right oh I mean, and yeah. And then I almost died. And then I did. But um, and I remember us being out for birthday dinners at PF Changs. Yep. And the doctor started calling you. And we walked out into the lobby. And she said that I was approved to get my PICC line and in January, and we both just like looked at each other. I just like, that was one of the first times we both cried.

L: Yeah, that was one of the first times I remember us being having something to do with a doctor and crying for joy.

C: Because we were so happy that I was because like, this is what we just knew. And I had started doing like college applications and everything. I think I'd already been accepted. Yeah, he just like we had that fear of like, Would I be able to go, which is why I think like how I convinced you to do it was like, I wanted to be able to go to college and this to get there because I was having the neurological issues. And that was what I knew would help it. And then we started the tech line process. And with Pete the pig. And I remember that first month, I remember we went back for that test, or for the doctor's appointment after the first month and how my numbers had dropped so drastically and printed out that chart for us. Yes, yes. And we were ecstatic. Yes, that was, yeah, that was almost an immediate improvement.

L: It was nothing we'd ever sought after, after we figured out that you were allergic to alcohol and you are allergic to the bandage and you were allergic to everything. That was one of the worst experiences. So your arm was lumpy and bumpy and red and swollen.

C: And it literally asked you at that time to have my arm amputated. I was the worst that was one of the worst experiences of my life going through all the Lyme disease was whatever, but having an allergic reaction to the thing inside of your body that you cannot take out. That is yeah, not I. Luckily, it wasn't actually the PICC line itself. It was just the dressing and the cleaning stuff. So I finally figured that out. And yeah, the PICC line was an amazing thing. I mean, it really, it really was helpful.

L: But how many months did you have that? I had that for nine months?

C: So I got it in January. And then I got it taken out. Right before you went to college. Yeah, right before I went to college. So eight months. Yeah. I got I like literally got it. Like, I think I got it out like the week before I went to college. And were you were cured. I wasn't sure. And that was also the time I remember us going into grandma's living room, on the phone with my doctor. And she said that she was calling them to the nurses to come and take my PICC line out. And that was when she also told us that she was leaving the practice. And I think we both once again, cried tears of joy with that doctor, because I think we thought I was like in remission. And you say that I was in remission. And I just always have a hard time admitting that I was in remission. But I think that was in that time. And I think it just like we felt like we were finally like I had finished high school. We are closing that chapter of high school. But we are also closing the Lyme disease chapter. Yeah. And then what did it feel like to you? When I called you a couple of weeks later, and I started telling you that I couldn't read anymore.

L: Yeah, that was that was. That was heartbreaking. Yeah, I just I thinkI couldn't believe we were going backwards again. And yeah. And he would call me crying. And you came home every weekend. And we had to pick you up once or twice. And thank goodness your brother was at college, the sames college, so he was there to help take care of you that his girlfriend at the time and your cousin was there. And so you did have people to help support you. But I can remember, your roommate was just clueless and I felt so bad. Because I mean, if at the time I was mad that she wasn't being understanding and sympathetic, but you know, she's an 18 year old girl. It's like what the heck is wrong with this girl. And again, there's no physical. You don't have a broken leg. You don't have a cast on, you don't have a amputation. So you look at you.

C: And that was always a problem through the whole thing other than the death look that you would get occasionally but and I think that was also when I started. People get the freshman 15 And I think I lost. Oh, very quickly.

L: Yes. Because that was one of you lived on clementines, and I don't even remember when times ginger tea. And I think gluten free bread. And that was like I literally that was all I ate. Yeah, and it got worse and worse.

C: And the it came to the head when we went to the football game. You came home for the state champion football. I always wonder as well. I hate why I hate football. This is why this is this might be

L: Yeah, so we I remember we went to the game. Everything was fine. I don't think you felt good. But you know, it was fine. It was cold. It was you know whenever we were on the we had were on the bus that we had chartered the bunch people chartered a bus and we were riding home and we were sitting together and you were laying your head on me and you felt horrible at that point. and all of a sudden you said, Mom, I can't feel my legs. And I was like, what? And you're like, I can't move my legs. And I was like, What are you talking about? And you didn't panic as much as I expected that I think I held it together pretty good, too. But I think somebody had to carry you will.

C: My brother in law carried me off the bus? He carried me on the bus number who remembered somebody carried you. Yep. And you had to carry me inside. Once we got home, he carried me inside brought me up to yours and dad's bed. And then you and I sat there and cried.

L: Yeah. And then we realized that you just when you said I want to go back to school, because I couldn't send you back to school like that. Luckily, it was the end of the semester, almost. And, and again, thank God, you were a great student, you were teachers loved you. And your professors were amazing. Because High School, your teachers were all great about it. But you know, this college, you don't know how they're going to be in if they're going to understand understanding, and they were amazing. And they all let you do your your exams finals online. So you didn't have to go back to school. And well, you just went back to clean out your room.

C: And I had to take one exam, one exam in person. room while I did that, yeah, that's right. That's right. And then we realized, and that was the other thing, I think we realized, number one, you weren't going back that semester. But we also realize you weren't going back period. I don't, we didn't make that choice yet.

C: I had made that choice. But you had not accepted that choice yet, I don't think because that I got my other PICC line. And again, that's when we get when I came home too, because that was when they did the mold testing. And that was when they found out that I had the mold toxicity, which is why they think I got so sick so fast. Um, because I had been exposed to mold, which makes sense in an old dorm that is probably never cleaned or checked. And they started me on an other PICC line. And at this point, I was with another doctor. Um, that was when we started with like the integrative medicine. And so I had been doing some supplements, but also like other medicines as well like prescriptions. And then they prescribed me. And I remember I was mad, because I just wanted the root like I had it in my head. I believed it so hard that I just had to have the IV rocephin again, and I would be just like it was the first time and it would be fine. And I remember I would get so angry. And we will leave those doctor's appointments. Because I did not understand why I couldn't just have the IV rocephin. And then it was because I had the mold. And they Sorry, I had to do that giant ball. And then I was also doing the number they didn't really fully understand why I was having the paralysis. Because at that point, I would just get it. It was like a weekly thing. I'd get paralyzed like once a week, and it was just random. And whenever it would happen, they just told us to hook me up to my saline drips. Which is why we have the picture of will also carrying me to the bathroom. And I had like the IV attached to me. And I remember, it was like a month or two into that. And like you were talking about like I think I had to like submit something for the next year. And that was when I was like I'm not doing it. Like it's not, it's not going to happen. And I remember that was it was way harder for you than it was for me. Yeah, I'm sure. Yeah, that was Yeah. Well, and I think because we, you know, you we had gotten to the point where we thought everything was done finally and you know, and then, of course at that point, mind you, we also found out that insurance didn't cover the whole eight months of the PICC line to so I think probably I was in complete panic about that as well. So, yeah, so then we you're talking about the first PICC line. So not only did we have to pay out of pocket for every doctor's appointment that I had to pay for, we didn't pay for supplements yet, but pay out of pocket for every doctor payment that I had. We put some supplements always that we were getting things that weren't on the network prescription. There was always other things too. So there was always other medicines to pay for. Yeah. And then I had my first PICC line, which we were told was covered by insurance. And then it wasn't until after I got the PICC line taken out that you were then hit with a bill of Do you remember how much that one was? That one was, I want to say?

C: Over 50? No, that was the second one. The first one was like only that the first one was five 6000. I want to say No way. It was more than that. I don't know. It's all it's all like at this point. I don't know. I can't I was more way more than we were anticipating having to pay. Yeah. And then you had to pay.

C: Well, my sister was getting married. I was going to college. My brother was also in college and then we got the next PICC line. And that one we got that approached to be covered. The doctor had told us like they knew how to code them so that they would be covered by insurance. And Lyme disease like not written anywhere, because if Lyme disease is anywhere written on a piece of paper insurance will not cover anything. And so it was not. We got the proof that they covered the insertion and the first dose of medicine they did when I was in the hospital. Right. And then it wasn't until it was like partway through me doing treatment when we found out they weren't covering these. And it was it was near the end of treatment, I think. And and But meanwhile, I wasn't going to say anything, because they were still I mean, it was I didn't care. I was you know, if they didn't say hand us a check right now, I wasn't paying and I wasn't, I wasn't going to tell them that I wasn't going to be able to afford this because you were getting the medicine you needed. And realistically, that's all I cared about. Yep. But we have to go back though, before when you got the second PICC line put in.

L: What happened that day when they didn't let me come back with you.

C: That wasn't that wasn't this one. That was when they inserted the third one in between me having my pulmonary embolism.I am pretty positive. Andit was the first time that they know this.

L: They didn't know the one where that guy totally screwed you up with no, I think that I think that was when.

C: So I had this PICC line in for nine months. And then in September I got I started having pain in my arm and like a little bit and then when we went to the ER, and they didn't do anything, they did the test, whatever. And then I went home, they removed the PICC line the nurse came remove the PICC line. And then we went back to that hospital to have them put in a new one in my other arm. And that was when they stuck me eight times. And because he that was when they put me into a different room because it like wasn't I didn't have the official appointment lined up for a long time and everything. And he you were in the waiting room.

L: I just remember whichever time that was was you were it was ours. I was waiting. And they didn't let me come back. Because you were an adult by then I was 18. Yeah. And yeah. And then by the time you came out, you told me that he's actually they wound up he didn't even do it and it in they run up having to take us somewhere else. So they could do it that way. Because they use like an x ray machine. And he was literally had me in a triage area trying to stab it. He didn't write he didn't do a Doppler machine. Yeah, that's right. That was and then I got that taken out a week later, because it found out that I had a blood clot, which was just absurd. But But I remember what the second PICC line though it wasn't that instant improvement. And that was super frustrating for both of us because you still didn't feel better. And you were still getting paralyzed. And you were still miserable. And you weren't going to school. You were doing anything. You were literally doing nothing. You stayed home. You didn't work. You didn't go to school, you did nothing for that whole semester. No, actually, longer than that was it?

C: It was just that semester, I knew I had the blood clot because I like wasn't doing I was doing a little better. But I was nowhere near how I had been first PICC line. But they finally when I got the blood clot,which also I think there's something wrong with me. Now that we're talking.I had a blood clot in my lung and like, you guys are freaking out and I was just vibing like I was like, alright, that's cool. Like it didn't, didn't faze me in any. I think I was just like, at that point, I was just I would think I would have just been numb to everything the entire time. I think my my brain knew well before I did somehow. But that doesn't make any sense. But like it just, we just had to go with what was happening because it was just the only option that I had for survival. Kind of true.

L: Yeah, so that that was crazy. So then you spent the night at the hospital. We spent the night the hospital hospital.

C: I also had remember I was breaking out because they had used alcohol on me when they had all said when that guy had stuck me eight times. Yep, I had a rash. Yeah, that was it. That was a time and then I did start at MC braid after that. It was like a couple of weeks after that. I started at MC and then which is Community College for those who don't. Yeah, can my community college and I was just I think I did like two or three classes like

L: Yeah, you didn't always we're not doing a full load.

C: And it was like, okay, but that was I remember how excited we were like my first day of school because Iwas able to like, do it. And I think that I made it through maybe I think I made it through the whole year. And then I started the next year and that was when like I kind of stopped doing treatment. I went through a couple of phases. Remember when I just told you I can't do it anymore, right? That was one of those times I was just like tired of my life revolving around taking medicines. And I think a lot of it some of that was the doctor too. We were done with our daughter. There's just we had again, that was a huge issue with their office and couldn't get through. We couldn't reach her we couldn't Talk to anybody when we needed to. And it was just, we were just kind of done with them too.

L: And that was when you had started also with, you wanted me to start doing things to like heal what we had done with all the antibiotics and stuff,

C: which is my favorite thing about us. Because in the beginning, people would say things to us, and we would shit on them and like, be like, they're so sick. They'd be like, the whole reason that like people can't be on antibiotics for this long of a period of time. And we're like, what the fuck not you can do this, and you'll feel so much better. And then we're like, oh, the damage to your intestines and everything of your body has been taken down by this medicine. And we were that way with essential oils to an acupuncture and yoga and everything. And now that now I am so granola. I now I should on the antibiotic. Yeah, really? No, I'm like, get those things away from Yeah, but I just think that's, but again, is what I say with our journey. I mean, we weren't ready. It does take you we always say that it takes you until it happens like you don't you never fully understand until you're in it. Right? Yeah. And we would have never yet and I don't. And I also, you know, like, and we'll finish with, you know what you're doing now.

L: But, you know, I think if I'm not sure if we had started with the doctor that you're with now, I don't know that you would have gotten better. I don't, I still do think that you needed some antibiotics I do. I do truly believe that. This isn't something that can be fixed just with alternative medicine. I don't think it can be just fixed with Western medicine.

C: Like I think it needed to be and Munger me and me and Dr. Sayed on talk about this, which is Western medicine and Eastern medicine have to work together to get the most healthy you can be. And I think that is very true. And I think I always I always say like, once again, I would do if I ever was as bad as I was before. Like the neurological things, I would get a PICC line in a heartbeat. And the bad thing is that I don't know if that's like a deep rooted anxiety that will pop up randomly sometimes is that I don't know if they would ever allow me to because I had that. Which is the most upsetting thing too, because the reason I got the blood clot was because I was on birth control and had the PICC line at the same time. And I will never be on birth control again. So not an issue. And I also think I think you got the blood clot when they pulled the PICC line out. I think it Iremember they said had been on the end of it. And they think that when they pulled right got dislodged that's when I Yeah, so I already had it and it wouldn't have traveled to my lungs if they wouldn't have popped it out. Yeah. Which is a fun thought. But then it was the fall of now. I think I've lied before because Braxton was born in 2017. So I'd lied. I didn't make it through your school.It was so I had the I had the No, no, no, I made it through a year of school. This is there's I need to literally need to write it out. Make sure we've done it before. But But I don't have it was it was it was the fall of 2017 When I started getting paralyzed? And do you remember the phone call that I made to you when I was driving? Like when I had been driving? When you were driving? Yes. Had that. You tell that story.

L: I can't talk.

C; I was driving home from my college. And I remember your best friend's live a street away from us. And I was passing their house. And I started because I could tell when I was getting paralyzed. And I think before this, I had been getting paralyzed a little bit. And this was when we had started going to acupuncture at that woman's house. I remember Yeah, yeah, she had been helping us a little bit. And I had gotten paralyzed like a little bit. And before it would happen, which is like I am like still convinced. I think they were a form of seizure even though they could never prove that it was because a lot of people before they have a seizure, they have like a tail that like lets them know what's coming. And mine would always be like, I could feel like the tingling and the numbness starting, then it would always be my left side first. And I remember my left leg went when I was driving. And I called you immediately from my car. And I was like I think my left arm went to like I can't put my left side of the body. I'm on like about to be on our street. And I think you like had to hang up with me and call Dad and dad met me in the driveway. He had to physically put my car in park. And like he had to then get me inside. And I remember I was crying because I knew that you were just like I wasn't going to be able to drive anymore.

L: Yeah, yeah. And this was one of when you started with your it's not a line thing. It has to be neurological thing which was an eye.

C: I I just let you I would have literally didn't have a choice because I was paralyzed. So whatever you wanted me to do, I was gonna do, but I just like I just said okay, because I knew like I knew and I don't remember if you remember this, but I would just keep saying like it's Lyme. It's lying. Like I I accepted it. I knew whatever my Lyme doctor was gonna be doing with somehow like I would get out there. And but you took me Murray took me to that neurologist in Virginia. I remember, he did some tests and all of them were coming back, but you kept fighting and you're like the the she's she gets paralyzed like she cannot, she cannot move. And at this point was when the acupuncturist had figured out that if you stabbed me on the foot, if there was a spine, so I carried on, I crocheted myself the case for the acupuncture needles, I kept them I literally remember you remember, you drew the X on my foot with a sharpie, because like you, if you weren't home, you needed to make sure that dad and everyone else knew where to hit beware to hit you. I feel like you literally with Sharpie X's on my foot where I had to be hit. And it was helpful, because I remember one time pop up, had stabbed me in the foot. And I think one time when a Grammys, nurses that was at the house had to stab me like, and that was also another time with i Good job on making smart and a good student because I did not finish my semester again, I could not finish my exams. My teachers all let me go because I had such high A's anyway, they were like, it wouldn't matter if you failed the test, you would still get an A. So I didn't have to do that. And I remember the one morning, it was like before you were going to work. And I was awake. And I said I was paralyzed. And you literally had dad carrying me to the car. You drove me to Virginia at like five o'clock in the morning to that doctor's office so he could run tests on me while I was paralyzed.

L: Yes, yes. He came out to the car. Yep. Because I couldn't come in. So he came out to the car did some tests on me.

C: And that was after it was after that time when he didn't do any I couldn't find anything that then I finally just like looked at you. And I said like, Have you had enough now like, but I really I we did go to another neurologist, because they had found something which we've never talked about before. And I've thought about it recently is that they remember they found something on one of my lower vertebrae in my back. And we just like never did anything about it because they didn't seem to concern and we were like we have too many other issues. And they were like, they said that that couldn't be what was causing the paralysis. You're like, All right, we don't really care. We have other other stuff door. But I remember also Oh, going to the ER when you were paralyzed? Oh, yeah.

L: That was it. I'm Yeah. And she lifted your arm and dropped it. And it fell. And then she left the room and didn't. And then just came back in and said have you had a flu shot? And we said no. She really am flu shot. And she said, I remember her looking in my face and saying you will be you won't be paralyzed when you decide you're not the right. Yes, that's she yep, yep. She That's what she said. She said she Yeah, when she's ready when she's ready to start moving show me. And I was like, what? I also and they never can she never came back. I mean, it was like they just left us in the room. And we were like, what? And I was and of course, that was one of the many times where I heard the who said you have mine. How do you know you have Lyme? Do they test you for Lyme? Did you test positive for Lyme? And this was also not about we also forgot about the doctor that yelled at me at our ER that urine infection? Oh, we'll go back to that in a second. But I just also wanted, they're not like you brought me to that. Er,

C: I never wanted to ever go like I would never. I never ever after like one of the first times I went to the ER and they asked us those questions for like probably one of the times I was constipated because we went to the ER a lot because we always thought my appendix or my gallbladder or something was going on. Because I was literally full of shit. And it was I like never asked to go there. And I was after that appointment at the ER when she said that to us. Because then dad was with us at that point. And he literally, he came and picked us up. I thought he followed us in the ambulance.

L: No, I don't think he was there because I think he came and got us. Unless he was in the waiting room. He wasn't in the room with us. I know that. And I went out and screamed at the doc the doctor and just was crying and yelling at them. And then dad came and picked you up could move carried you out and they said oh are you leaving? And we said yes. She goes, Well, there's some discharge papers. And I was like, nope, not doing it. We just walked out walked right out so mad. I don't think I'd ever been so mad. Yeah, that was one of the worst. My kid can't move and you're ignoring it like

C: oh, that was that was one of the worst experiences but we have to backtrack. Now like I said we would at some point, but this was a year into me being sick, and I had ear pain. And I remember like telling you I had ear pain and I wanted us to call the Lyme doctor and tell them and like see if they could do like anything for it. And you were like well maybe you just have an ear infection. So you brought me to our regular pediatrician which was like, once again a pediatrician. It was very regular regular doctor, family doctor and I said we stopped going to the pediatrician because they didn't help us at all when I was struggling in the beginning, and that he had asked why I was on on the medicines, and that was when we first learned oh shit don't say anything about Lyme disease, right? Because then he started on us with and this was we had heard other people talk about this in the Lyme community, and we had never experienced it yet. And because then you had gone through my whole history, and you said ankylosing spondylitis. And this man blew up. And he, I remember sitting there just with my jaw open, because he was saying how you had wasted a year of my life. Yeah. And I needed to be backwards. Totally. He said, You had wasted a year of my life. I needed to be at Hopkins seen by a team of doctors. I was like, essentially dying. Like scream at you have ankylosing spondylitis, which you didn't. And you me like, and I remember you calmly said to him, like, I had the definitive test done. Like, I had the test done. Yeah. Yeah. At that point, I was like, okay, but you, but then we gave me a form of like, get me to Hopkins. He did. Because he like had pull. It was gonna get us into Hopkins or something. Yeah, but I do remember a split second. Because of them went to the grocery store, which was is our thing and has always been our thing. And you cried out, you were crying in the car a little bit. And you were kind of because you were like thinking a little what he was saying. And you were like, maybe I need to get you to Hopkins stuff. I was like, No, we don't need to go to Hopkins. This is why I'm, it's fine. And but that was the first time that that had happened to us at a doctor and that was like to this day, to this day.

L: I will never ever tell a medical professional that I have Lyme disease unless it's like unnecessary but ironically, that doctor is the doctor who prescribed you marrow medical marijuana. Do you have Lyme disease does not know that I have Lyme disease. And that's why I have the medical marijuana, medical marijuana for anxiety, which I do. But I love that. That's my favorite. He's the one that you have to deal with. And I will I will.

C: My favorite thing also is that he prescribes me we'll get into this too, but he prescribes me my medical marijuana license, um, for my anxiety, but then also, he knows that I had all my endometriosis issues fully believes that and also was telling me how the medical marijuana would help with the pain and things like that. And I just some like, last time I go see him. I'm just gonna be like, looky here, sir. Let me tell you about let me tell you a little story. But that was even like, I never wanted to go to the regular doctor. Like I would never go to the doctor period. Unless it was a Lyme doctor, I would go but if it wasn't because I just like, right. It's medical. Now I know the terms for it, but it's called medical trauma. And I have it but you also have it for me. Which is like a thing when I know that if I've ever told you that I need to go to the ER, you know that it's serious because I know how badly I do not want to ever go. And a time with that was so before I had the medical marijuana. The reason why I have medical marijuana is because I had insomnia for like seven years and did not sleep. So I I think I still have a journal somewhere in my old room. Do you remember my Barbie journal that I would write notes to you at nighttime? And I would say, Dear Mommy, I it is 330 in the morning, I am still awake. I don't know why I'm still awake. I'm in so much pain, I cannot sleep. I'm turning off my alarms, please do not wake me up in the morning. I'm not going to school. And I would like to text you at 330 in the morning knowing there's gonna be like, I wrote you a note. I'm not going to school. And I have like, if you flipped through that journal, it would be like, read it. It would be like every day, like do your mommy it is 340 in the morning. I don't know why I'm awake. I cannot sleep. I am in pain and I could never sleep. And so finally, I think it was the doctor in Virginia that was like, You need sleep. You need like your body can't you know? Yeah, I think it was I can't remember which doctor but they were like you need to sleep like your body cannot heal if you're not sleeping and if you're not going into REM sleep to because I did have a sleep study done but I don't remember when that who did that either. And we did the pain doctor. I just remembered that crazy pain. Doc. Did you do a random pain doctor at one point? Yeah. And we did a lot of things. We did cranial sacral physical therapy. Oh, yeah, for a long time. Love. And we did the therapist in Frederick that did some weird that Tukey remember that? That was before I even had Lyme. I was in middle school for that. That was for my job. Not 100% That was for my job. Um, but I always quickly go back to that later too. But I was always randomly sick. I was your problem child and I always will be you're probably not like in your favorite but we'll get into that. And butnow you made me lose my train of sleep.Oh, the sleep medicine. And so they prescribe I was on flexural member I was taking three flexural a night and would not get knocked out. You take flexural sometimes for your pain and you could take like a half a pill When you're out, and like it was three furniture and we used to do melatonin that did not do for you everything that you could think of to sleep, like we would remember you, Scott, the lavender spray on my bed, I tried everything, and nothing would put me to sleep. And then they gave me Ambien. And he I was in high school, I think still, the Ambien thing happened, either high school or like, right when I came home from being sick. And I remember we were watching One Tree Hill, so had to pass. We were watching One Tree Hill. And we had paused it because dad came in the room. And I can't remember. I think it was Jake Jake kowski was on the screen. And so it was Peyton Sawyer. And I was just staring at it. And I said like, he's coming towards me. Like I can't like I'd like thought that the pic like he was literally coming at me. And I remember you were you were just like you just turned and I don't know what I looked like. But I can imagine what it looked like. And it was just like, my eyes just like nothing would focus. And then I started hyperventilating.

L: Yeah, then you got scared like, first I thought it was cool. Like it was on a trip or something, you know, anniversary. That was cool. Then it freaks you out. And then you were panicking. And they couldn't breathe. And yeah, and that was yeah, that was and then. So then we wound up having to call 911 Because you were like knocking on Bravia, we're out of control. And I didn't want to take the chance of like getting you in the car and driving. So we call 911. And they took us to the hospital. Another one of our wonderful trips that will make you not want to ever go to the hospital. And they took her right into the rubber room. psychiatric ward, put us in this room. And you remember the room I think better than Yeah, it was literally like how it was padded walls. They put me in a rubber like my instead of a paper gown, it was made out of like a foamy rubber material that they put me like in like a shirt and shorts. And I don't you were with me the whole time. I think I was with I think like at that point too. Like, the ambient already, like kind of worn off. Like I don't know what like, and I just like looked at you like what the fuck is going on? And then that was when we realized they thought that I had did it intentionally. Right? They thought that I was trying to kill myself. And then you had to like go out there and be like, Hi, the doctor. The doctor prescribed us this dose, right. And I remember we finally a doctor came in. And I told her what had happened. And she went right out. She said Get her out of here like she she was like this is not where she belongs and no. And you know, I think they just took us to a regular room and checked you out. You were fine. But yeah, yeah, that was that was the two.

C: We have a lot of them. And that is one of the questions that I've had written down since I came up with this idea for the podcast for you was What is your scariest moment that happened with me being sick?

That's a really hard question. Probably the PRI there's two and I don't I don't know if there's anything worse than these two, but probably the first time we got paralyzed because I was like, What is wrong with my child like that was, you know, the other symptoms were set, you know, but but being paralyzed, I was like, you're gonna be paralyzed forever. What's happened like, and when that was really scary, and that was just a symptom. And that wasn't something I'd heard about people having and it was just something completely out of the blue. And then the when they told me that you had the pulmonary embolism that was very scary, because I knew people die from having blood clots, and I was freaking out about that, too. So those would probably be the two scariest things ever. Probably. You were always very good at hiding house. Yeah, well, and that was and that was always hard for me to because I really didn't. You know, I tried to always be brave for you and try not to cry. I mean, a couple of times. I certainly did cry with you. But there were many times where I would be out of your earshot and I shot Yeah, there are many times that I would break down and just ball and and it was hard because you know, I mean, dad knew you were sick too. But he wasn't with us for 99% of the appointments and he didn't really ever really understand it and then he stopped. Yeah, no, exactly. I mean, and most and I'm not sure anyone in our family but I don't know period nobody in any other line people and you know their and their their person.

C: And they're even line people who I don't think like the paralysis. I don't know anybody who has the same paralysis experience that I did, because I was literally periodically paralyzed throughout the day, all day for six months of my life. And that that was I'm crazy. And I don't remember like how it came to a point where like, I would be numb to it like now when I get paralyzed now, which like I randomly will get paralyzed, sometimes at nighttime, it doesn't, it literally does not faze me at all. Like, I'm just so numb to it. Because I know that it's not permanent. But there were like you said, like, there were time, I remember the time when we went to the ER, I can remember I was paralyzed for five hours. And that was the longest I had ever been parented, like, normally, it'd be like, an hour tops. And I remember that time when we was we were kind of like, What the fuck do we because like, you had stabbed me in the foot.

L: And like, it wasn't, nothing was changing, and we didn't know what to do. Those Those were always scary. And and then like, just, you know, you want to take a bath, and then I'd have to constantly check on you to make sure you didn't get paralyzed in the bath, which you did many times. And, you know, yeah, there was just a lot of, you know, this never leave wanting to leave you alone. Like you were like an infant, you know, couldn't stay home alone, because you might get paralyzed.

C: And what if something happened, and I can remember having to like, I would have to have other people, like, I would have my cousin come over and babysit, I was like, 20, almost, or something like that. And I would have to have them come over and babysit me so that I could get you to go out and like do things. Because you always say, I'm not a burden. But like, you have to baby your 20 year old child or baby, your 20 year old child, take them to the UN Taylor, you had to take me to the bathroom, because I'd be paralyzed. And I would not like you would literally be wiping my make me and I That's absurd. And people don't have to do that, or shouldn't have to do that. And I remember, I know. And I appreciate it greatly. You're a superhero. But I don't. It's just like, I don't think I realized it took me years to realize how much the paralysis stuff affected me. And like I can remember,the first time I took a shower without wearing a bathing suit. After the paralysis stuff because I wear a bathing suit in the shower, I think for like maybe even a year after I stopped being paralyzed. Because there would be times when I would get paralyzed. If you weren't home, I would because like you said, like I would take a bath or a shower, I would have to wear a bathing suit in case like my dad or my brother or someone else would have to come in and get me because I was paralyzed. I had to have I had to use Graeme shower seat, I was 20 and having to use a shower seat, because I could like could not stand up sometimes fully in the shower. And like I remember I remember one time which I was the first time that I realized how much my sickness impacted you which like, I knew it impacted you financially. I know it impacted you with that you like wanted me to feel better, and you couldn't help me with like the helplessness. But I don't think I had realized how much trauma you had from it as well. Until one time I was after I had been paralyzed. Like I wasn't been paralyzed anymore. I don't know how long after this had been. And I was singing in my shower. And I don't know if you remember this, but it's something that I remember like randomly, I'll think about it. And I was singing belting out the top of my lungs like I normally do, and you came sprinting into my bathroom. And you thought that i You can't and I said like I was screaming. And you thought that I was screaming for help because I got paralyzed in the shower. And I was like that I cried in the after you left I sat down and cried on the floor of my bathroom shower, because I didn't realize how much like I had fucked up my family. There and there that like still do like I would go in. I knew that one of us is going to cry. Or it might be if I cry, it'll be a good time to do that. I don't think it makes me feel bad that I did that to you. And that like I, every night or whenever I would go to my room, you guys would all make sure make sure you plug your phone in because my phone when I would have to Hey Siri, call mom on speaker because I would be paralyzed and couldn't call. And it would only work if my phone was plugged in. Or when I would go in the real world. I still don't turn off. But not just for you and for everybody. Because that always says Turn off your phone. I'm like No What if what if? And then that I the 30 year old shoulder that I would go remember when I would go in the sauna. And you still do it. You did me when I was home at Christmas. I had been downstairs for longer than you thought it would be downstairs and you had you called me to make sure that I wasn't paralyzed in the sauna. Yeah, like and you'd like still those little things. But we all went through it and I like and then it came to the point when I say I'm your favorite child because we have been through an experience that you did not experience with your other child children and that I don't like we have a relationship that most people do not get as a mother daughter duo. And we would put Rory and Lorelai to shame with how close we are to the fact that we communicated without me speaking. Because I would be paralyzed. You remember that? My mouth wouldn't open like I'd be sometimes because sometimes I'd be paralyzed so much that I couldn't even open my mouth. You and it would literally be full on conversations. I mean, like you had you, you would know exactly. Yeah. You knew what I was saying. Every time I remember sometimes people would see it and be like It's like how when, when a child like a baby learns to start speaking, and only the mom knows, like, what's going out there saying, yeah, it's how it was with us. And it would just be like, Okay, and how people like, you know, every detail about my life, including relationships and sexual endeavors and drugs by drugs. I mean, we'd only but like, you know, all of these things, because we are not. You weren't you were wiping me at 20. So they're like, there's not much but I'm, I'm sorry, that I put you through. You did?

L: Nothing that you had any control over, obviously, just, it's all I Yeah. All I just wanted was to figure out how to make you better. And you did it. If I didn't do that, say it on. The funny thing is, pre doctor say it on our if you remember, when we decided to go back, you had stopped doing Lyme doctors, and you decide to go back. And we went to the I can't remember name, Dr. R or something.

C: Yeah. And we went to her and she was doing acupuncture, and she was more of an Eastern medicine. You also pushed me towards that stuff, which I think is funny. Now looking back, it's like, I was always like, that's not gonna work for me. And you're the one that was like, let's do this. Right. Well, I at that point, I think I knew that your body needed healing, like I knew that, that, you know, antibiotics weren't going to do anything for you. I really thought that, because your gut was a huge, huge issue for you at that point. And that was like one of your main things and I and I just thought it's just been ruined from all the medicine and it's time to fix you like now to heal the body and hit me of the Coldplay song fix you try to fix you know, I don't listen. But anyway. So I remember we went to this doctor. And we really liked her. Andshe, we she was an integrative medicine doctor, and we had only gone to her a couple times. And she told us she was moving. Yeah, you ever and she said, Oh, but I have this, this wonderful woman who's gonna take my spot and blah, blah, blah, we were like, oh, no, and we were panicking. And I was like, let's just try it. See if we like or. And that was Dr. Say it on. And that was the best thing changed my life. Yeah. And, you know, I honestly feel like, I don't know if Dr. Satan had been the first person you saw if you would be where you are now, either. I mean, I that's why I say I mean, I hate. I hated what you went through for 10 years. And I hated what I went through. And I wish maybe the journey didn't take 10 years. But I do think I mean, we learned so much and entrance, like, I mean, you have helped so many people because of all that you've been through and learned.

L: Me too. I mean, I've had so many moms call me and there were times I remember, like, even when I was in high school, and it would literally you'd be like, every single day, I get a message from somebody knowing somebody or they have it or they have Lyme, and they need help. And that was what led us to like our support group that we started the montgomery county support group and like, I wouldn't have done any of that stuff.

C: And then I remember I was I guess I was 21 Maybe when I started doing my, my work with Nancy. And we went to that meeting, and I heard her speak. And while we were sitting next I had told you like I had known. I feel like from like the second that I got diagnosed with Lyme, we washed under our skin and I realized how fucked up everything was that I knew that I wanted to do things to change that. And like when I did the testifying stuff, right. And I testified, and I was in high school when I testified the first time. Yeah, um, we did the May Day Rally to remember that we've been doing in both of them when we did the Yep. And, um, how we did the line walks every year. And you supported me and all of those endeavors and half the time like you went and did things about me too, because I was too sick to go and do these things. But you knew I wanted to be doing something. So you would go and so not only were you taking care of me, but then you were helping other people find their care. And then you were also helping fight the injustices, all these things. And you were also working full time and being a parent to my other two siblings who got the short end of the stick for about 10 years because all your attention was focused on me. They were both adults by then pretty much so lucky. Yeah. And when I remember sitting there when Nancy said

They're talking and like you started, like grabbing my hand, because you were looking because you knew that's exactly what I wanted to do. Because she said, I think she said, I'm looking for people to go with me to help me to talk to talk to kids at these camps and, and I was like, oh my god, I was out of school at that time, because that was when I was finishing, being paralyzed, like I had, yes, starting to come out on the other side of that. And I just, as soon as she said that, I was like, This is what you're supposed to do, like you sent me. You sent me to Maine, and an 11 hour car ride with a woman who we met once once you met me? You I mean, you met her with me. But at her school, where she worked an hour and a half away all of my stuff in her car and said, See you.

L: What was it like you were a five year old? I knew you were okay. But it's just so funny. And like, Well, me, and it was the best thing ever. It was so cool. And when I think it gave you purpose and made you like, you know it that it gave you a reason to why you've suffered all that time, like, you know that there was a an end to it, and that there was a purpose for it.

C: So I think that was and yeah, just same thing with our support group. When we did our Montgomery County support group it was, you know, we were just to the point now, where we just wanted to help other people, you know, if we could give them a little bit of a shortcut, so they didn't have to maybe go through 10 years of it, but if we could help them figure it out. And and it was just a good, I mean, a lot of those people. I mean, I remember we had a person who tried to hide suicide, and you know, we, you know, it was knowing that people were that desperate and that bad. And we were like, no, like, you can't be like, it's just you ever worry about that with me. I don't think we've ever full on talk to, like, brush the subject. But I don't know if we've ever fully talked about that. I don't know that I ever.

L: I mean, I was worried about your depression, for sure. Well, I remember when you message my therapist, and you, like wrote everything out that you thought that I needed to like talk about because you knew I wouldn't talk about anything, right? Because like I said, like I have such an wish I'm so at the same therapist, and we try to work on this, like, I have such an emotional block on everything, dealing with all of this, because that was literally like my survival instinct was just like, I don't, I can't feel how scary it is, or how bad it is, in any sort of like shape or fashion because I have to just survive, right? And I don't I always knew you're a survivor. So I don't think I ever thought you were ready to give up. But I knew you were very depressed and very sad and missed out on so many things that I hate it I suppose I was so happy your senior year, when you were so involved in like doing the football games and the the students section and you know, painting your stomach and all that where you were at least well enough to do those things. And that was like that, that made me so happy. And then when you were able to at least start going away to college. And but yeah, the mindset of, you know, your life not turning out the way either of us thought it was going to as far as you know, I mean, the normal way of doing things of you know, doing all the fun things in High School, graduating, going away to college, four years being done getting a job, you know, just et cetera, and, you know, years, took a few, you know,hit a few detours a few curves, but, and we you know, I think once we both got to the point where we were like, okay, however long it takes whatever road we go to get there, but you'll get there but and I think that is something that you helped me with so much that a lot of other kids don't get from their parents is that the health is my most important thing. And that everything else doesn't matter. And like everything else will be there when it will be there with like, I want like, the mean not going to school. And like I remember I like started getting upset when I like couldn't go a couple of semesters and stuff. And you're just like, it'll be there when it's like it'll happen. Like, you can't you can't do anything until you or your health is okay. Right. And like, it's the thing that I always say, which I think I got from you, which is like, your health, like nothing else matters if your health isn't there, because if your health isn't there, you can't do anything else, right? And I remember, you know, you wanting to, you know, try to go back and I was like, You can't drive. You can't go back to school. You can't drive like you you had to, you know, it's just a reality checks. Like, let's wait another semester, and then you go, you know, and yeah, I mean, it took me it was hard for me. I mean, like I'm saying it, but I was also like, oh, I want her to go. You know, I mean it was it was I remember I think a couple of times like I called Taylor when she was like, either at school or she was living in her house because I could hear you crying from your room in my room. And I like knew you were crying about me. And I didn't and I like knew I couldn't do anything because My life was is just like, Well, I would like I have to just do it. And every choice you made was the right choice. And I think, yeah, I'm, I'm here.

C: And I think it's funny now and I think sometimes that like, literally, every day I remember you, I will pop up my Facebook memories sometimes about you had posted on Facebook one time you had texted me and asked me how I was doing. And I said, like, fine or good or something. And you posted about it. Because every time before that, it's always like, terrible. Like, I feel awful are these things and like how shocking it was that like I was good. Good. And okay. And those little I knew if you said those words to me that it was meant to Yeah, and how nowadays? I remember, I don't it was like a year ago or something like that when I started having my endometriosis issues. And you had no like you didn't have any idea of really about them because I don't ever have to talk about it anymore. Really. Because I've gone from like you being in charge of everything. To then you like, let me fly. And you taught me everything that I needed to know. So now I know like when I went to fight for my first endometriosis surgery, like I knew that I was going to get what I want from the doctor because you had showed me like, the doctors don't owe you shit. You don't know the doctors? Right? And they don't they don't know everything. Yeah. And that was a good piece of advice that you taught me as well as that. Well. And one of the biggest things like we didn't talk about yet was when we went to the conference. Oh, yeah. So yeah, that was the next thing we're gonna talk about. So I, for those people that don't know, if you didn't read my blog, I had a hysterectomy in the end of October. So I am now almost three months of my two and a half months postdoc from having a hysterectomy. And I have known I have been telling you, since we watched under our skin when I was 15 or 14 years old that I'm not going to have children. Because in that movie, they talk about how hard it is for women with Lyme to conceive children. And then I learned that it also is possible for a mother with Lyme to pass Lyme disease to their child. And I knew that that was something I would never do. And I always remember like, I would say that to you. Like you'd be like, oh, when you have kids. And I would say I'm not going to have kids. And you would always say well, and I got mad at you at some point a couple of times, I would kind of scream at you and say I'm not going to have children because like it's a it's a choice. And it's it's I know, it's hard for other people to understand. But it was my choice. And like, as you said, I already had so many things in my life that I had planned out that were changing rapidly. And having children was always something as a child that I was like, Oh, I'll do that. And now I've grown up and I said no thanks. I'm too tired. But when we went to the Lyme mine conference in New York City in 2019, that was a big trip for us. And we were very excited to go and sit and listen to all these line people. And then we found out that the doctor from Virginia, who essentially got me into remission, the first time was speaking. And then when I got there, and we found out that she was speaking at a section about mothers and babies. And we went down to that little area and we were sitting down. And they started talking. And they started talking about because you had also said well, you would say to me at times, like you could do a surrogate. And I would just say, because I just knew that was something that I would never do. Like my sister would say that she would be a surrogate for me. And I would just say, like that. I just knew that wasn't something I would do either. And I remember we were there. And I don't know if you remember, but she was talking about how she had people who were doing surrogates, and they kept losing the babies. And then they did tests. And they either found out that like they would find out the surrogate then headline, and then they weren't sure if the surrogate had had Lyme before they had planted the embryo or if the embryos and gave the lime to the surrogate as well. And I can remember you like grabbed my hand and I looked over at you. And you were had tears streaming down your face and you just like shook your head. And I think I cried too, which was like a big thing for me to cry. Because I knew that you finally accepted like, Yeah, I'm not that's not something that I'm going to be able to do.

L: Well, and I remember people asking questions after there was a q&a. And, you know, people kept saying, Well, is there any way to make sure you know, what if they test this and what if they, if she's on mother's on antibiotics during the pregnancy, and what if they, you know, test the placenta and blah, blah, and every answer doctor, the doctor said was, there's no way to know there's no way to guarantee that you won't pass it to the baby. And I was like, Nope, I wouldn't do it either. Like I think that was when I realized It was like, what all the stuff that you went through? How could you ever could take a chance of that happening to your child, if you could have really been happening? And I remember the first time Yeah.

C: And that's all like, that's the biggest thing that it always has been for me, which was the same thing with like, COVID is I never want anyone else to ever have to feel any sort of sickness in this sort of way. Like, that's, it's terrible. And like, there was never a time in my life where I like had a plan of how I would, like, kill myself. But there were definitely times when I would think like, Hmm, I'm not like, this is terrible, like, I don't need this. And that's not something that I would ever, like, if you had to, if it's something is that bad that it's putting your thoughts there. That's not something that I would put on it. And I know that we had known people who did have children with Lyme. And they that were born with it. And the not even just like the physical hardships, the emotional hardships, the financial hardships, which I had witnessed our family deal with. And, like, I know, I am not the sole reason for it, but I am the main reason for it. And it's like, that's something that I will never be able to apologize to you guys for or that once again, you'll say it's not my fault. But all of the doctors and things. I would say that we have spent well over $100,000 In the last decade, if not over $200,000 on my medical stuff.

L: Probably not far. Yeah. Like I don't I can't even one PICC line alone was. Yeah, I'm pretty sure the one PICC line, the second PICC line was $58,000. I think for me like that, yeah, it was either 58 or 64. Those two numbers are sticking in my head.

C: And I, I can't imagine how and then also with, for me, it was always with like, anything in my life could trigger the lime to come back out. Because there's no such thing as a cure for Lyme disease, it's always going to be in my body. It's just sleeping right now. And, which is why like I do like I will have flare ups. So after my surgery, I had a mini flare. And like I'm at the point now where I know my body so well that I know how to do all these things. And you're the only person I think that fully understands the way I live my life. And like that I refuse. I don't do the antibiotics. And when I had to do like how and how much of a mental journey it is for me when I have to like when after my hysterectomy I had an allergic reaction. And I had to be put on antibiotics and steroids. And like the mental jumps that that is for me this year. It's like a real life fear of me being put on anything like that, knowing that it could trigger me to have a flare which it did. And because it's always in the back of my head of it could get worse in the spiral and you're always the person that stops the spiral from happening. Because it's just like it's just gonna get better and like my food and you are always when I went gluten free. And I said do you want multiple times multiple times I will give you credit you have tried to go gluten free with me. Free dairy free, sugar free, dairy free, and you would try recipes you used to make me my the gluten free bisque with chicken tenders used to make those for me all the time. We don't need to talk about the horrific cornbread that you tried to. And you were just like you owe all of those things, the essential oils, any Gluten Free Recipes, the people the essential oils, you took me to a woman that did aromatherapy massages and you learned how to do them and you would come into my room every night and you would give me an aromatherapy massage because it would relieve my pain for 20 minutes and it was literally like a 20 minute thing. And it worked for me and it worked and you would do it and you learned all of those things. And the like now with my I don't use it I use only natural cleaning supplies only natural. Like literally everything my toothbrush or my toothbrush, my toothpaste, my shampoo my body wash. And when I told you I was buying these things, you're just like okay, like that's that's fine like you just know that those are the Yeah, I mean like anything that I can do to make me feel better and you're the only person that doesn't give me the there's other people who don't either but you don't.

L: And I don't and I mean you you know yourself you know your body you know I mean you know you did that crazy couple week detox crazy diet that you did that was eating trees an

C: the tree she was referring to as a burdock root. And it was delicious tree but yeah, I did that

L: Yeah, but it made me feel better. And and having my freezer full of bone broth making bone broth that you'd make me for days in the crock pot and filling the freezer up with cups of bone broth. The, you know, protein bars, you'd make me really punchy bars and banana muffins. But in all of those things to get matters, and yeah, but you know what it was, that was all I could do. I couldn't fix you. But if I could do anything to help at all, or make you feel a little better anything, I mean, as a mom, that's all I wanted to do. So, if any of those things helped you, that was, I would do it. That's all I could do. Yep.

And I?

C: Why, why, like, why did you never question me? Like you would question sometimes I think with, like I said before, like, you would kind of bounce like, push back at me sometimes with like, you're gonna need to go to school today. And I did need to go to school, and you knew, like, I needed it. And I would get up and listen to you like, and, but you never once questioned, like my symptoms and stuff. Or, like, I was paralyzed, and you never didn't believe me, or like that I could not get myself out of bed. You never.

L: I mean, first of all, I knew you and you're a great student, and you push yourself harder than anybody else would ever push you. And so I knew that there was you weren't faking? You weren't a kid trying to stay home from school? I mean, I just knew I knew that you weren't lying to me. I mean, I, you were sick. I mean, I knew you were sick. And it was never a question. And, you know, why would you fake that you couldn't move. I just, I mean, it was just, I just never doubted you. I mean, I, I knew you weren't lying to me. I just, you know, and, and especially, through going through years of doctors and tests and everything. I mean, I knew what you had was real. But I knew it was also controversial. And I knew we were gonna have a fight. And I knew I needed to always be there and, you know, support you and stick up for you and fight whoever the heck I needed to fight to make sure you got whatever you needed to. Please try to make you feel better. What do you think made you believe the Lyme disease, because I

C: There are so many kids that I get in my support group. And I know I call you all the time, and I'll tell you like, because it makes me upset because I see all these kids in my support group. But I'd be like, my parents don't. I saw one today. Like my brother doesn't believe me. My parents don't believe me. They're making me good up. They're making me go to school, I can't do these things. I'm failing all my classes and things. And I never ever once had any sort of experience like that with you. Because you never doubt I think, truthfully,

L: I think under our skin, I think because our journey started with watching that movie, that documentary. And seeing all the different ways Lyme affected people and and learning about the controversy right away. And knowing that that this was going to be a fight, I think I really do think that movie was why I really do because I can just remember, just there were so many people in it and so many different ways they were affected. And you know, and they and they did talk about the the controversy. And so we learned that early on that there was a big thing with chronic Lyme and a big issue in the medical community. So I think that was why I just you remember a couple years after we had watched it the first time, we watched it again, with dad and a couple of other people. And we both just like kept looking at each other as it was going on because we like now like some of those symptoms I hadn't had before. And like we understood those symptoms.

C: And then like at that point, I was telling you like I wasn't having the children and we would understand that part and the insurance stuff. And we knew the names odd was John John Walcott. Oh yeah, we knew the names of the bad guys. We knew the names of the bad guys. And we were just like, and I think I think we both cried at that point, watching that movie again with those people because, and they were all kind of like, whoa. And we both were like, we've been in this for two years. Like we we've been here like this. And I think it was also like a crying for when we watched it the first time we were so naive, right? And here we were two years later and still in it, and not really seeing the light at the end of the tunnel still. Yeah, and I think that was the problem with that movie, too. I mean, that's why there was the second one, which we never did watch, but there none of those people were in a good place. And that was very scary. I literally have no I've had notes for like the last year and a half that I have passions and things that I wanted to make sure that I brought up for you. And oh, one questionback to like the beginning of when I was going through my misdiagnosis process. Why did you never believe? Like, why did you keep trying different doctors?

L: Because you were getting better. Like each each time they gave us a diagnosis. I mean, I can remember that neurologist and you she had you. You said the three, three pills three times a day, and many other pills, and you never really fit into any of the diagnosis that they gave you like, chronic tension headache. Okay, but why are her joints hurting? Or ankylosing spondylitis? But why is your Are you having neurological issue like each thing? You'd never quite fit into any of the descriptions, and then the medicine that they would try never worked. And things kept getting worse, not better. And so I just I don't know, I just didn't feel like we had found the right person. Yeah, because you weren't better. Yeah. And I was like, Nope, this isn't working, like need to, let's try the next one. Let's try that, you know, until, till and the line thing, and I remember I was talking to Brittany and sitting down with her at the Music cafe. And she was like, I think probably the first person that was a young person that had been going through Lyme, and you know, chronic Lyme. And when she described, I think some of what she was going through that was more in line with how you were. Yep. And and then having our friend who was the Doctor Who here again, is a western medicine doctor, and ER doctor saying I think she has Lyme. And I'm like, Okay, if she thinks you have Lyme then and then knowing her whole family has lived. And you know, it was just there was just, I just didn't feel like anybody had figured it out. I just didn't feel like we were there yet. Until until we finally started dealing with the Lyme. What's it like for you? Or was like for you?

C: When, like, other people didn't understand, like your friends and our family. And even like dad, or I don't know about my siblings, because they never really said anything to me about. They didn't believe me or not. But it was frustrating it was. But I kind of almost think I just kind of just kept on doing our thing and just didn't worry about what anybody else thought or said or because I knew nobody else understood. I mean, and again, I remember we've talked about this many times where you almost wish that you had a cast on or, you know, that was one wish I had cancer. Yep. Yeah. Like something that that people knew about and could see and believed and it was, you know, I and I think early on, we knew we were kind of in this fight alone. So and like there were some people, I feel like the people that supported us the most were the line people still, like they understand. Yeah. And like that, like when I found my line friends, my line groups. And that was like the best thing that could have ever happened to me and to you. Because then you could ask like you talked with their moms a little and like, right and your support group of other parents because no one it's an invisible chronic illness. It's just like a double whammy right there. You're not gonna get anything.

L: Yeah, yeah, it was. It was hard. And it was, I mean, and people. Everybody knows somebody who has Lyme, or its headline, but yeah, like you say, but no one's was the same. Right? And, and most of them were acute Lyme where they saw the bullseye, and they got the antibiotics and they were fine. So trying to and I did many times try to explain chronic Lyme to people. But I didn't I never really, other than doctors that I fought with. I never really let nobody was nobody. Nobody quite none of my friends or family. nobody questioned me. I mean, Dad would do what I would do. Everyone saw me like maybe it's something else, you know, but um, you know, I never I never felt like anybody was, you know, thought we were and maybe they did just didn't let me know that that we were crazy for doing what we were doing but we still do. cares. I know we did the right thing and I will never regret the journey we took I mean, a scene and watching you seeing you where you are now. And and I think you appreciate your life so much more than most 25 year olds do at this point in their life because you struggled so much harder than almost anybody in the world.are having to you know, anybody that you know that to get to this place. So I think that will live on your own and have a job and be healthy. And I mean, I, I never, you know, you know, I always say I don't want you to leave me, I don't want you to go away. But every time you mentioned going to another country like I get, I get a little sad. But I also get super excited, because I want you to do whatever you want to do. And, you know, choose to do and go wherever you want to go because you miss so much that I just want you to enjoy your life. Yeah.

C: And I think that's something that was like a curse. But a blessing also is that I was forced to grow up at 14 and like forced to understand these real world issues of insurance companies not helping people. And like different doctors and watching people literally be put on life support from an illness that I have. And all these like watching people have seizures, and all of these horrendous things. And to the point now where it's like literally, like, the only goal I have in my life is to just like live my life. Because there was many times in my life where I literally thought I was going to die. And like it sounds dramatic. But I was paralyzed in the bathtub. Like I could have drowned in the bath. But I got paralyzed. I realized while driving, like I couldn't eat anymore, I remember I thought I really thought that I was gonna have to go on a feeding tube at one point, right? I dropped down so much in weight because I couldn't eat at all. And like all and like the pain and the just wanting the pain to end. And now it's like I talked about this with my therapist, I was like, I don't have career goals in my life. I told you like, I don't have dreams of like owning the house and the white picket fence be like, I literally just want to do things that make me happy. I just want to have money to be able to do the things that make me happy. But then there's also like, always the little thing that I always have with the fear of it coming back and things. And I think you have equipped me so much, and all the things that we have done that like I am fully prepared for if at some point in my life that does happen like that. I know how to handle things like when I had a flare a few weeks ago. And I know like okay, I need to pull back on eating sugar. I need to do this. I need to do more of these. I need to make some more juices. I need to take some Epsom salt baths I need to sauna. And like knowing even with your surgery, you you you know, like you told me other day you didn't feel good and you I want to go for a walk but I my body I shouldn't go for a walk and you know that like you? I don't think there's anybody I know that's in tune with their body better than you like you know how to read your body so well.

L: And I think that's why on anything that you won't ever, ever, ever be where you were before. Because you'll you'll know, when some signs start happening, you'll know, okay, I need to do this or I need to do a detox or I need to do you know, I need to rest I need to whatever and you're, you're you know, okay, I'm not gonna make plans this weekend. I'm not you know, you you know what to do? Yep, you have the tools to do it now.

C: Yeah. And I think that also with like, me, what's your so funny, like when I graduated college last year, and two years ago now, I guess, technically. And Mike, it got cancelled because of COVID. And how you guys were so upset. And I and I didn't care at all right? Because I was just like, I'm done. This is the one thing I had to guess I didn't want to finish school. I don't know if you remember that. Like there were times when I told you I was just like, I don't want to do it. It's pointless. Like, I don't need to do it. I'm doing communications. To be honest, you don't need a degree for communications in this day and age do for most jobs. Well, that's the one issue why it was a problem. Because you there's not a single thing that I learned in college that I'm using for my job? Of course not but but you have to have a description of it. And like there are multiple times when I wanted to not do it, and you made me do it. And I'm glad you made me do it because I met some awesome people there. And I did get my big girl job. And when I was like moving out, the thought of living alone is something that I never thought I would be able to do. Because I always have the fear of like if I get paralyzed, which I get paralyzed probably once every like. I don't even know like four months if that or something like that. It'd be like randomly at nighttime normally when I'm like trying to fall asleep, and I'll just like feel it and then I fall asleep and then I wake up and I'm fine. And I don't live alone. I have a roommate who I love, but my roommate is gone a lot and I am alone during that time period and like I'm fine and I love you told me that the day you asked me you're like are you okay alone? I'm like I love it. Like I thought like it because and also like I'll get into mood sometimes which wishes the other thing that I've been going through this past year that I've been talking to about which was my hormone issues, and like which another thing like I've been in tune with My body like struck me like I was able to figure that out. And like, started treating myself for that, like, what? God, I have my own doctor that I found. And then you were like, What are you talking about? Because I've now like an adult, I started this as a child, when like, literally, you had to do everything for me, you had to make me my own pillow charts, color coded color coded filters that I had to mark me and make sure that I took my medicines. And now I'm the one that like tells you that like, okay, here, I have to go fill in, do my weekly fill in of my medicines and stuff. And I keep track of all the things. And you've prepared me so well for these things. But like, I will get into these moods sometimes where I'm like, I don't feel well, especially pre surgery. Before my surgery, things were very bad and dark. And because it got to the point where I couldn't do the things that I wanted to do anymore. And like I was not I was being controlled by my endometriosis, which is like how my life was controlled by my life. Right. And now like, the other day, I didn't feel so good. And I was walking around on my Hakka walk, getting my Starbucks. And I put on my main character energy playlist. And I'm listening to Maestro from the holiday, which is the theme song from the holiday. And every time I just like walk, and I look around me at my neighborhood, and I like just get a huge smile on my face, because then I'll just like sit there to myself, which is also what I do when I'm working out. If I'm like running or something and I'm struggling, I'm just like, You are fucking paralyzed. Right? You couldn't hold your phone, you could not bathe yourself, you could not do any like I couldn't brush my hair.Simple things. And then here I am. And I'm like, my life. Yeah, I can do anything. And it's 95%. Because of you.

L: Oh, that is not true. You had to have the drive and the survival instinct and the strength to do it. You You know, I pushed but you had to offer you, but you are the one that pushed for.

C: I would say I'm coming up on 11 years since I started having Lyme. And I would say for the first at least six or seven years, you were the driving force because I was so sick that I let it like you were my voice you were the one that was telling doctors things. And you were the one that you would have to remember things because I couldn't remember what like to tell the doctor about symptoms that I had. Because not remembering was a symptom. You would do all of these things, like I said, with the getting my medicines, and you were the one that would research new doctors to find me a new doctor to go to when things were getting rough. Or any of the things that would help me with my pain management. Like the Messiah, I used to do the massages every week, you and dad would take me to get massages every week. And the sauna you would get you were the one that got me into the sauna. Like all of these things that are My ways of helping myself and you're the one that got me into all of them. So really, this whole podcast is just to say, thanks. Well, I wouldn't have it any other way. You're my baby. And you're just my favorite human in the whole entire planet. You're you're one of my Sure. You can pretend it's okay. We all know the truth. My one my last question to you before will end is what do you have to say to the other parents that have kids with Lyme that struggle with believing that their kids have Lyme or don't know where to go next with doctors and things like that? Like how do you how did you keep moving forward? What would you say to them if they're just starting in their journey?

L: Oh, that's hard. I mean, first of all, you know, and everybody's different. So I don't know. But I knew with you that you said from the beginning, you know, I always knew that you weren't faking something was wrong. You know, it was never ending for 10 years. I mean, you don't fake something for that, you know, that long and you were a, you were a 14 year old kid, you weren't able to do the things that teenagers do. And, you know, so I knew that something was wrong. And, you know, I, I used to think doctors knew everything. And I quickly quickly learned that that was not the case. And so trust your gut and ask lots of questions and, you know, do your own research and, you know, go find find help support groups and, you know, places where you can ask questions. I mean, that was getting into the Lyme community. I think I said this so the Lyme community was a vital part of us learning a lot. getting referrals, which is why I'm always so help, you know, willing to To help people and give referrals I have, especially now with Dr. Se Adan, I have recommended her so many times, to people and and, you know, the other ones too. I mean, I gave, you know, people who, who don't have insurance, you know, I would always tell them about the doctor that we went to that took the insurance at least to get them started. And we have numerous people we know that go to him still. But just, you know, be you have to be your child's advocate, you have to you have to trust your gut and know that you know, what's best for your kid. And you, you know, you need to find the help them find the answer. I I just, I mean, if we had believed the very first doctor, you would have been on antidepressants and younger, you know, I mean, you know, it's, it's crazy to think, and I just knew that was not and I don't know why I knew, but I just knew that wasn't the answer. And I think and it was funny, because there I had no reason to, I think because I think because he said, we treat the symptoms. We don't need to worry about the diagnosis, but we need to treat the symptoms or something in that respect. And I was like, that was the first time I was like, That makes absolutely no. Like what we need to know what's causing the symptoms. And when he said that, I think that started me. So thank thank that doctor for saying that me because that's when I knew no, I need to know what the diagnosis is. What is wrong with my child? Yep. And that was the journey and to figure that out, and it took us a long time. But it look where you are now. So obviously we did something right.

C: Yes, you did. And my what I lied to you and I have a follow up question is what would you say to the kids whose parents don't believe them?

Call me I'll be there.

C: That's exactly what I knew. You're gonna say.

L: I would like to be. Yeah, that's, that's heartbreaking. I just, you're the limy mom. Yeah, but I, I just I, I mean, if they're old enough to do it themselves, they just need to just trust themselves in their instincts and just work on it. Show them under our skin. I mean, that that was an eye opener. I don't know how you could ever watch that movie and, and not understand because it's so hard to understand. But but at least see what what your child is going through. I mean, it's it's heartbreaking. It's just such a horrible, horrible, horrible, horrible, horrible, horrible disease. And you Yeah, I I just don't give up. I mean, you there's find support groups, find people your age that you can at least talk to and and try to do what you can on your own, I guess if your parents aren't willing to but don't give up. Never Never give up. Love it.

C: Love it. Share the best ever.

Thanks, Mom. You're welcome. Aren't you glad that you actually did this? See, I can't believe we talked for two hours about this. Okay, but we are an hour, there is plenty more so you'll be back. But as I sign off on every single podcast episode, I give a song recommendation for so we briefly touched on this. But so when we started our journeys to Virginia for a Lyme doctor, we had a core group of songs that were our songs, and to this day, they are still our songs, and we listen to them every time I am with you. And I have a literal playlist of them for us. But we have our sad song, which is her diamonds by Rob Thomas. That is the one that we used to sit and cry to. Oh, yes. And then it was worse when we when when years after it we found out that his wife actually had Lyme disease. Yep. Because they used to always say she had an auto immune disease. And not that many years ago, they came out and said she had Lyme, and then we realized that her diagnosis was literally about Lyme disease. Yep. And so that is our sad song recommendation. But then our ultimate number one song which you will catch us singing a duet of at some point in your lives is well it's happy days are here again and get happy happy Barbra Streisand and Judy Garland best song ever. I am Judy. Lisa is Barbara. If you would like to hear a snippet of us perform, let us know.

But that is the song to sing and belted out and feel it in your soul because Happy days are here like

Again, and it's all because of you least you brought me into this world. You kept me into this world.

Thank you.

Thanks. Thanks for just being you. You will give their mom the world's best mom mugs, but I'm the only one who literally gets to have.

I love you. All right. I love you. Thanks for joining