May happens to not only be Lyme Disease Awareness Month, but it is also the anniversary of when I started showing my Lyme symptoms. May 7th 2012 was the day that everything changed.
10 years have now passed my by on this journey and my oh m what a journey it has been. I decided to share the best and worst things I experienced each year of the last decade to not only help me process how almost half of my life has been spent as the "sick chick," but to also show myself— and others—that there is still good on this journey.
I hope this episode helps bring you some more awareness on what life with Lyme is really like, and as always, please check for ticks!
In honor of Lyme Disease Awareness Month, check out some of the links below to see what others are doing and learn more:
Transcript:
Hello everybody, and welcome to the It goes without saying podcast. It's me cast your host and happy Lyme Disease Awareness Month, in case you didn't know, May is Lyme Disease Awareness Month. And there's also a couple other special things that happened in May. So lately I have been feeling a little bit more anxious, and just kind of off. And it took me until about two nights ago to realize why, on May 7, it is my 10 year Lyme aversary. So on May 7 2012, my first Lyme symptoms started it was a headache that did not go away for Mirage, probably about seven years or so. And that is the little seed that spiraled everything else that I have been on this journey for the past 10 years. And it made me feel some type of way. So I thought it would be therapeutic for me, and maybe interesting for you all, if I shared the best, and the worst thing that happened to me each year over the past 10 years of this crazy healing journey. So without further ado, my first year with Lyme was pretty much just living hell, it was figuring out what it was going on. And finally getting the diagnosis and then having to really start the grieving process that I have still probably been in a way less now than I used to be. But I would say the past 10 years has been off and on grieving, a lot of things that I thought my life was going to be, but there have been positive. So that's what we're going for two. So in that first year, I would say there honestly, probably was not very much good. I still I've been thinking about this for a couple of days, and I could not pick the best thing that happened to me that year, because everything just fell apart. I literally my whole life, everything that I thought was going to be I was learning was not how my life was going to be, I wasn't gonna be able to play sports, I wasn't going to be able to go to school, the way I needed to go to school, I wasn't going to be healthy, the way that I had been my whole life. And also learning the world is a really shitty place. And that was not an easy thing for a kid. And throughout all of that, though, my worst day, my worst day in that first year, I still think about it. I had had a sleepover at a friend's house. And by this point, I think it was probably late July or August. And so my first symptom started in May. And I was still in the misdiagnosis process that I didn't know was a misdiagnosis process at the time. And I had just gotten a call from my parents that the last test we had done came back inconclusive as well. We still didn't have an answer. And so now the doctor wanted me to go to the hospital and just get all the tests that they could possibly do to me to figure out what was going on. And I had had a sleepover at my friend's house, they called me at my friend's house, I was laying on her couch, I remember this so vividly. And my mom said, We're gonna come pick you up, we're gonna go to the hospital, and we're gonna get these tests done. And I just wanted to cry. And I don't think I did. Because if you've been listening for a while, I don't really cry. I think I cried in the car, though, when my parents picked me up because I was just, this was my life. I was trying to be a normal teenager and hang out with friends. And here I was getting ready to go to the hospital for testing. And they sure as shit did a bunch of tests, I had all of the bloodwork taken. I had all these scans. And the part that really stands out is that was when I had my spinal tap. And I, it wasn't bad for me. I am pretty fine with pain and needles and things. But that was really hard for me to watch my mom and my dad and my sister. Look at me with the pity. I think I don't even know if it was pity it was more just fear, I think, a little bit of pity and fear because I was 1314 14 I was 14 I'm really bad with numbers 14 and laying there getting a spinal tap. And I think that's when they kind of realized, oh shit, this is her life now. And that kind of threw me off as well. So that is definitely the worst day of my first year with Lyme. And we move on to year number two now. So in year two, we're in 2013. I am ending my sophomore year of high school and he's starting my junior year of high school. And there was definitely a lot of bad that year as well. And that was when my real depression sit and so spring of 2013 was the first year that I was not able to play softball in my entire life. And at that point, I had been to two different doctors already not having any luck and was about to start my third doctor and just still missing out entirely on school that It was like the last quarter of 2013. My sophomore year of high school. I missed 29 days in one quarter of my first period class. And I remember that because we were all like, How the fuck did you get past that class? But I did. And I got an A. I don't know how. So that depression that year is my memories of that year are laying in my bed. On my body pillar, Fred. I've shouted him up before shout out to Fred got me through these really horrible times in my life, watching Nicholas Sparks movies and crying. But they were also good. So the fall of 2013. I had been with another doctor at this point and was starting to feel a little bit better. Things were going good. Not like super good. But they were better that I was able to feel like I could live a little more. And this is when I was turning 16. Yes, yes, I was going to be turning 16. What? Oh, that's fun. And so November of 2013, was when I went with my best friend's family. And we went to Disney for our 16 birthdays. And this was the first time that I had done something normal in two years. So I was not with my mom, who was my caregiver, I was taking care of myself, I had to pack all my medicines, I had to take my medicines by myself, which was kind of really liberating, too, because I was able to actually care for myself. And I was able to do things, I was able to walk around the parks all day, I was able to have fun, I was still able to eat things. At this point, I hadn't really gone on the strict diet yet. I was gluten free, but nothing else yet. And I was just able to not focus on my illness for a while. And that was pretty cool. So that was definitely the highlight of that year, then we move on to year three. So the end of junior year of high school and the beginning of senior year. What a time, what a time, what a time. So the best part of that year was I went into my senior year of high school feeling pretty good. And I had been working with a new doctor and I was feeling really well and was able to actually experience the good stuff at the beginning of senior year of high school. So I was in the student section at our football games, painting my stomach cheering on the team, I was able to help with my homecoming week hallway, which I had never been able to do that stuff before because I wasn't at school ever. I also had my abbreviated schedule at this point. So that really helped me be able to actually participate in school. And I just had a really great first couple of months. And then the bad started coming back. And my worst part of that year was how quick it all started coming down. And when I realized that I was going to end my senior year as the sick kid still, with a PICC line in my arm that everyone was going to see, I was actually the sick kid now. And I didn't actually really care very much that people were going to see the PICC line. It didn't bother me it actually worked as a badge of honor. But I hated that I was going to have to still be the patient that I was still going to have to sit there and instead of doing schoolwork and all these things with everybody else, I was going to be pumping myself with my IV and flushing my IV line and having to sit with my nurse and get my dressings changed on my PICC line. And missing out on going to the beach or my senior week at school whenever when we went to the lake and I couldn't go into the lake because I had a PICC line. So still ended up missing out on the end of senior year good stuff, which you know, as a teenager, it seems like a really big deal. So then we head into year number four. year number four was great in I had Pete the PICC line helped me get to the best I had been feeling at that point. And I was going to Salisbury University so I was actually thought I was in remission and was going to be going to college and getting the actual college experience experiencing something normal for a change, which was truly truly amazing for me to like, I didn't think that I was going to get there. So that was definitely the best part of that year and the highlight for me. Also my sister got married that year. That was pretty cool too. I will say that Taylor and well then it all came tumbling down, tumbling, tumbling tumbling. And that was when I was at Saulsbury. And it was actually probably, I think, a couple of weeks after my sister's wedding. And I fell off the cliff, as I say, and everything just came tumbling down. I couldn't read like I physically could not read. And that was, I think the worst thing for me. I had always known kids with Lyme that had a lot of the cognitive issues and things and I had always been super lucky. If you think that's lucky that mine was all physical. Normally, like I had the physical pain, I had the tremors, and the hot flashes and things but I had been okay with my cognitive function, like my memory was still okay. And I was able to like, be coherent. And all of a sudden, I literally could not read a single paragraph without my eyes like feeling like I was going to pass out or throw up. I was actually not really eating because I was like vomiting. And I was being forgetful. I was forgetting things all the time now. And it just, I was withering away. And I wasn't who I had been at the beginning of that year. And realizing that, once again, my illness was taking charge of my life, and I didn't have any control was really, really scary. And that was when I got paralyzed for the first time and left Saulsbury. So then we head into year five, and year five is when I had to come home from school. And I had my second PICC line Petunia at the PICC line put in and I think the worst part for this one so contrary to your for when Pete the pic was kind of the best thing that had ever happened to me here five, Petunia, the pic was kind of was not the best. That was not the worst part. But just because I was fully banking, everything on having the same experience with Petunia, that pic that I had with Pete the pic. And that was not the case, with pizza pick, it literally took a month. And I was like holy shit, I'm a different person, I feel so much better. And with between you the pick, I had the PICC line in for nine months. And I still never got to that point. And so having to fight my mental battles with that of the expectations that I had placed on that was really hard and fully accepting that I was not going to be ever going back to Saulsbury was a hard pill to swallow for me and for my entire family, then obviously, the worst part of that year was getting the PICC line out because I had a blood clot and being on the same blood thinning medication as my grandmother was. So here I am, at the ripe old age of I think I maybe was 19 at this time. And I have a fucking blood clot and my 75 year old grandmother and I are taking our bloods that are medications at the same time every night, while my friends are out at parties and going to college and doing all these things. So high school was rough, because I was fully immersed in all of it. But at least with high school, I was still around people. But now I literally I didn't have to be around anybody because I wasn't in school. So I was just here and sick. And that was just all very, very depressing. So I after the blood clot, things were okay ish. But then the best thing happened to me that year was that I got to start at Montgomery College. And that was really amazing. Because as I just said, like, I wasn't doing anything I wasn't around people I was just constantly sick. And being able to go back to school and I'm I like school. Like I like learning I love to read. And so I was really excited that I got to actually start start building my life back a little bit again, I think is how that journey felt for me. So being able to have that opportunity to go to MC really, really brought your five around. And then Dundon done. We head into year six. So heading into year six. The best thing that happened to me one of the two best things that's happened to me in the last 10 years happened in year six. And that was the birth of my baby my nephew Braxton J's who is the love of my life if you know me, you know that's very true. Him and his sister but she comes later are the highlight of my life. So Braxton was born at the beginning of that year, and I then started nannying him. So I was spending every day that I wasn't in school with him, which was a lot of fun because I got to have those bonding moments and we have the best relationship because of it. But that all came to not a halt. But a little speed bump. When the worst thing that happened to me in year six, which Honestly, it was probably the worst thing that had happened to me. And all six years at that point was when the paralysis came back. And at this point, it was when the paralysis came back full force. And I was getting paralyzed every day, multiple times a day. And that started a six month journey along with that. So the day that that really hit home, which was the worst day that I can remember from that year was when I was driving home from MC one day, and I got paralyzed driving. And I literally was driving in our road is like a very hilly, it's very hilly. And I was able to call my dad through my car, told him that I was getting paralyzed while driving. And I coasted home. I don't know how I put my car in park. And then my dad had to carry me inside because I was paralyzed in my car. And that was fucking terrifying, because I thought I was going to die. So I thought I was gonna crash my car and die. But also just the realization that I can't do that anymore. And I couldn't, I was losing another freedom. I had Lyme, this taken a lot of things out of my control, and caused me to have to not have a lot of things. And that was noticing that it was taken away from me right then and there. And so that was definitely the shittiest day of that year and the six years that I had been sick at that point. So heading into year seven, things were not looking good, how was paralyzed still. And then, the best thing that happened to me that year was the leaf program starting. So it was just in the memories of this just popped up on my phone recently, which gets me all giddy when I think about it. But I had been going through this six month out of my paralysis. And literally like, I want to say it was like two or three weeks after I had officially started driving again. Because after that incident that happened in the year prior I hadn't driven, obviously, because I've got paralyzed and I was terrified of it. And no one wanted me to drive. So it took me a while to get back to that. And then about three weeks later, I was driving up to Maine with Dr. Nitze Fox to go to our first ever leaf program event. And that was really crazy and getting able to spend that summer traveling around the East Coast, which traveling is something that I have always wanted to do. I still want to do if anyone has any travel tips or tricks and then my way, but I hadn't been able to because of the lime. So being able to travel the just even though it was a few states that year, it was still things I had not seen before people I had not met before. So that was really exciting. And then that fall, it got bad again, with my period issues getting pretty rough. So when I got the blood clot, again, I've been on birth control since I was like 15. And I had to come off of it when I got the blood clot because estrogen can also cause clotting and things like that. So it had been a couple of years now that I had been off of it. And my period had slowly been getting worse and worse. If you listened to the last podcast I did, you'll know what I didn't know at the time I had endometriosis. But my period started getting really, really bad, my cramps are really awful. And just came to the point where I was bleeding three weeks out of the month and only not bleeding one week out of the month. So I was getting really anemic. And things just got really rough. And that is when I ended up having to get put on the next one on birth control implant in my arm. But leading up to that I just kept withering away once again and I looked like I looked sick. And I hate that this like a thing to say but I was gray. I wasn't even just like super pale. I just like there was no life in me. I was gray, I had these horrible dark circles, I couldn't eat again. And this is when I was living off of brussel sprouts, which is a weird thing I know. But I really liked sprouts. But that was definitely definitely the worst thing of year seven was having all of those issues because I had felt like I was kind of in control of the line and then off period as you started. So now heading into year eight, I definitely started getting better and back to myself a little bit more after I got the next one on in the birth control that really helped literally stop my periods. And that was also around the same time when the best thing that happened to me that year. My niece Lila Grace was born. And I got to nanny her as well as her brother so we got to have that fun. And that is also the year when I finished at MC which kind of blew my mind. I got my associates degree and it blew my mind because I didn't honestly think that I was ever going to get any sort of degree as soon as I left Saulsbury I thought that My academic life was over, and that I wasn't going to get a college education and I didn't know what I was going to do with my life. So being able to get that was really amazing. But it kinda was blown to shit when I went down to South Carolina to visit my best friend Peyton at the end of 2019. And at this point, I had been working through the pre Crohn's diagnosis that I had been given in October of that year. And the doctor had put me on some sort of anti inflammatory medication for that, and I had had a really bad reaction to it that actually made all my symptoms worse. And so because of that, the only options that I had were to take an antibiotic or a steroid. And I did not want to do that, because I knew number one, steroids and Lyme are really, really bad, don't ever do it. And then were the antibiotics. I knew that I could have a herx reaction. And I really didn't want to have to do that. At this point, I had not really been doing any sort of Lyme treatment. But before that, I was on the integrative medicine track as well. So I was just kind of anti antibiotics. And I was also on some weird diets that I have been working with a nutritionist on to help with this. I don't even know what kind of diet it was. But all I knew was that like, all I could eat was sweet potatoes. And like curry powder. It was a weird thing. And I don't know why. But I ended up having to take the antibiotics. And I took them like a week before I went to see Peyton. And then I got to South Carolina, and I fell apart. And I literally, like stayed in her bed for like the four days that I was there. My friend Abby who lives down there. We were supposed to hang out. She ended up having to come to Peyton's house. And we always joke about it now. But like we had a five hour conversation and my eyes were closed, I was physically too tired to open my own eyes. And so I I was awake, I just sat there on the couch and talk to them with my eyes closed, just move my head from side to side. And I felt like I was high. But I was not I was just entirely so sick that it was I was like delusional. And I couldn't eat anything picking up having to go and get me like gluten free pretzels. That's all I could eat. And I just really fell apart. And I did not bounce back from that until months later. And that is when we head into year nine. And I dropped down to like 100 I think the lowest I ever got was like 118 pounds. And I was like on skin I was gray. And I just was a shell of a human and acting through it as so many chronically sick people. No, we are the best actors that are out there. If we would give Meryl Streep a run for her money, man. And I started going back to Dr stayed on at this point. And so this is when I was at my lowest this was definitely the worst thing for me that year was I just wasn't a human, I was just going through the motions. I didn't feel anything. I physically I was just so sick. And she slowly brought me back to life. And she literally saved my life. And then COVID hit. And I think that COVID was kind of one of the best things that happened to me that year, which is so crazy, because it was so, so terrible. But it provided me the time and the space that my body needed to heal, I was able to work from home, I was able to focus then on my food that I needed to nourish my body, and focus on the physical things I needed to do for my body and the mental things I needed to do for my body. And I was given that space and an opportunity to, like fully focus on my healing, which I had not actually had the space and capacity to do yet in the nine years I had been sick. So that was kind of crazy, but anywho this year, so then I also was able to have the best thing that happened to me that year, getting my personal training certification. And that was really cool. Because once again, I'm going from a person that was literally paralyzed for six months to being a personal trainer, which I hate, like, hyping myself up but like that's kind of pretty fucking cool. And to be able to help people find the love for exercise and the escape that exercise can be which is what it was for me. And still is for me, is still so cool for me to be a part of that. So that was definitely the highlight for me there and then heading into the last year. Year 10 going through it all the worst for me Definitely the endometriosis stuff. So once doctor say it on and I had worked through everything throughout year nine, and I was bouncing back, I was literally just a human. And I liked the person that I was becoming I was thriving at University of Maryland and I was working at Orange theory and doing so well. And then I started with all of the uterus pain, as I call it. And my bloating and everything got so much worse. And that is when I had to have my endometriosis surgery. And that was like, a good and a bad for me. But it definitely caused a lot more pain because it will literally cause me more pain. I ended up having the internal pain and issues that I had talked about last podcast episode as well. And it also just then kind of brought mentally me more just, I get those thoughts with this is it I'm getting sick again, how am I going to do this, but it definitely was nowhere near as bad as I used to be, which I'm so grateful for. And then the best thing happened to me in the last year was that I graduated from the University of Maryland, and I got my big girl job. I now have an official big girl job. I am a communications associate at a consulting firm in DC. And currently, I'm in the process of getting an apartment in DC as well. So yeah, the last 10 years have been a wild wild ride. And there have been so many goods and so many Bad's. But no matter what, I am so grateful that this is my life, and that I got to experience all of these things, the good and the bad, and the ugly, because they have shaped me into the person that I am today. And I would not be here and I would not know the things I do. And the people that I have met along the way, the amazing, amazing, wonderful people I have met along the way without all of these experiences. And I am so so grateful that this is my life and my journey. And it's just fucking wild to me that it's 10 years like I was a child when I got sick. And now I am like I'm an adult trying to be at least I'm trying to be an adult. And I just never there were times throughout this journey that I never ever thought that I would get to where I am today that I would get to be living, or at least looking to living somewhere else and not having to have my family be the my caregivers for me. And heck, half the time now I'm the caregivers for my family. Like it's just, it's just crazy to think about. And this all kind of started this thought process. Last weekend, we were on the way home, and my mom was on the aux cord. And a song came on. And she was like, This is my Cassidy song. And it was her diamonds by Rob Thomas. And that was my sixth song. That was my crying on Fred the body pillow crying on the bathroom floor, crying in the car driving, when I was just so frustrated, and let down and disappointed in my life and in my health and scared that I was going to die and that this was going to be my life. And that was the song that I would always listen to and that my mom and I would sit and cry together and listen to. And I sat there and realized that I hadn't listened to it in a long time. And probably like over a year and I have a playlist on my phone that I called my fight playlist. And it had her diamonds it had a whole bunch of other songs that I would listen to when I was in that in the depths of it when I was into the thick of it, if you will. And it just hit me that I don't need my fight playlist anymore. And that was kind of a big moment for me too. And I honestly started almost crying listening when we heard that last weekend because I'm here and I'm doing so well. And it's kind of crazy. A decade of my life. And this is where we're at. So yeah, right now I am working that big girl, job getting that big girl life or trying to. I am currently about to embark on a five week long hormone balancing journey that I'm excited about to try to fully get me back from getting my birth control out in October and fighting through all of those changes but but I really feel like I hadn't out onto the other side. And it's a good feeling. Thanks for listening to this one and letting me talk through my life so far. And I always end with a song, as you know, and obviously, we're going to have to go with my sick song, but we're going to listen to it and be happy that that's not me anymore. So it's her diamonds by Rob Thomas. And an extra fun fact. When we first started using that as my sixth song, we didn't know what illness he was talking about. So it's all about his wife and how she's sick. And he didn't really know what illness he was talking about. But then a couple of years later, it turns out that his wife actually has Lyme disease. And that's what the song is about. So it's just kind of fitting full circle moment right here. So go listen to it. Her diamonds Rob Thomas. And yeah, happy Lyme Disease Awareness Month. Thanks for listening once again. And I will be back extra soon with an extra special guest. You're gonna love her. Bye
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