This is, Bradley.
A dancer, creator, loyal friend, and confidant. A young woman who is not afraid to live her life beyond the seemingly insurmountable walls of Lyme Disease. She takes each moment, whether it full of pain or happiness, and fills it with her strength and honesty, knowing that no matter what direction this life takes her, she will be surrounded by those that love and support her, those who support her decision to live a life far more than Lyme.
And here is her story...
It took less than a week for me to go from a simple person writhing in pain, thanks to her joints, to a person diagnosed with Lyme disease. I received a months worth of Doxycycline and everything was better. And then, a week later, it wasn’t. My doctor and I made a plan so that I could just continue a Doxycycline regiment while I went back to college.
Within two weeks of my return to academia I started experiencing strange symptoms that made it difficult to walk while everything else just felt weird. After some unfortunate experiences with doctors in the city I had little choice in having to leave school for the rest of the semester.
I was still in pretty good spirits, I knew I had Lyme and Lyme was curable, just look how well I did that first month! So while waiting around to see doctors I decided to write a blog that wasn’t really about my cats. It gave me something to do and also kept all my friends updated on my incredibly boring life. (When I got back to school one mentioned how it mostly just talked about me taking naps, which I think is entirely accurate.)
By January, I had been diagnosed with POTS by a Lyme literate cardiologist who in turn sent me to one of the best LLMD’s in the country (who luckily just happened to be within an hours drive).
My Silver Linings
Around the time I had returned from my unsuccessful semester of college, a very close friend got diagnosed with inoperable brain cancer. The doctors were somewhat, well not optimistic, but said she could maybe live another 3-5 years. In the meantime, I felt so lucky that I was able to go see her often. One week we even “babysat” each other. I would go over in the morning, we would watch The View, make fun of the Barefoot Contessa (she always was making dinner for her husband Jeffrey, as if it wasn’t a cooking show), talk about that cool new show Grimm and our mutual love for Mr.Buble. I would make us grilled cheeses for lunch. She would tell the best stories, like how her father tried to walk the cat… everyday or about how she met her husband standing on her front porch. And then we would watch movies. One such movie was The Muppet Movie and she told me how much she loved “The Rainbow Connection”. We played it at her memorial service two months later. I still miss her deeply, but if I hadn’t gotten sick I never would have made those memories.
During this same period of time a friendship blossomed between me and another wonderful woman. She was the marching band directors wife and they really worried about me, so she read my blog and would write me emails that included updates, stories, recipes, and how my poor cats probably didn’t like being dressed up. They always cheered me up. Even after I returned to school that January we continued to email each other and it was always a treat when I got to see her. She was always so wise and funny. It was that spring when she first got diagnosed with ovarian cancer. I think our relationship strengthened after that, we both were rallying for the other. I was always impressed with what she accomplished with cancer compared to my limited abilities with Lyme (though to be honest I don’t think I’m the type of person to bike five miles while healthy). By my graduation she was in remission and I could not have been happier for her. I on the other hand had trouble forming proper sentences. We stayed in continual contact, we would email and call each other. She was healthy again and I was still sick, so she was one of my biggest cheerleaders. But then, within six months, her cancer was back. That was the first time I heard her cry. It was a year later when I got an alarming email from her husband. I was in the middle of some of the worst IV antibiotic treatments yet, but I rushed up to see her. I sat with her for three hours and even though she could barely talk we reminisced about the band and all the crazy things that went along with it. I was too sick to go back up for her funeral, but I still call her husband every few months and send him See’s Candy, as I had for years, on special occasions.
I wouldn’t be the person I am today if it weren’t for those wonderful ladies, and I wouldn’t have had the same friendships with them without my Lyme.
In My “Spare” Time
As I’m sure many chronically ill people can relate, Netflix and other streaming services have been a godsend for those many hours you spend drifting. I mean I love regular television too, but there are only so many “Say Yes to the Dress” episodes out there. And with these services I’ve really been able to expand on the type of shows I watch. To what you may ask? Everything. But amongst the “everything” I have found a new favorite genre: Science Fiction. I dabbled with it in college, became a Whovian and what not (yes it is definitely a society for owl lovers!). Thanks to my illness though, I discovered Battlestar Galactica and became less scared of the X-Files (except for that one episode), heck I’ve even watched a few Trek series. And the thing about loving science fiction and fantasy in the television world was that the communities were much more vast, maybe not in viewership, but certainly online and at conventions, and I’ve been able to participate in both!
Back when I was in college feeling sick and barely sleeping I started with Reddit, just to pass time and keep me from thinking about what I was really feeling. Eventually I created different usernames to interact with both people in my position and also people that LOVED television as much as I did. I’m on it way less now due to mostly my short daytime schedule, but it’s what started to help me feel less alone when that’s exactly what I was.
I also have that blog that’s not really about my cats, that one I started when I left for that semester at school. I stopped it when I got back to school. Not because I had nothing to write about, but I was grieving and depressed. But I started it up again this last summer, mostly because I felt I was alone and losing touch with my friends. I’ve written less about how tired I am, and I even wrote some informative posts about illnesses. Not Lyme though, that would be too depressing.
I haven’t had a job, sleeping ten plus hours a day and still dealing with POTS and Lyme arthritis would make that incredibly difficult and stressful. However, I have dabbled in tutoring (gotta put that Math degree to work). I kind of like it, I feel like I would be a great teacher. That’s just not what I want to do in the long run. But for now, helping students understand things and making them feel less “stupid” is at least a little bit rewarding.
Fake it til’ you make it
Before my Lyme diagnosis I was a mere college student struggling through school. I had learned how incredibly hard it was to fail and generally feel stupid, but I look back at that and think “you know what, that’s okay”. One, because it was incredibly likely that my thyroid issues had been triggered my freshman year explaining the incredible gap between my homework abilities and my lacking ability to write five proofs in fifty minutes (don’t worry I eventually had a professor who was also baffled by this). But apart from illness, I also found friends who had also learned they weren’t the smart people they thought they were. In reality, we were all intelligent; we had just chosen to throw ourselves into a pool of geniuses. And you know what, by the end of it we had all learned to swim.
But apart from the academics, I became a member of one of the best bands I couldn’t imagine. No we didn’t really march that much, but it was so much fun! I played the Mellophone (big trumpet) for marching and my beloved French Horn for concerts. The best part was the comradery; I made some of the greatest friends. Of course, the football games were a close second. Who doesn’t like getting dressed up in a kilt and yelling out ridiculous cheers like “Taco, taco, enchilada him em’ in the head with an avocada!” We had a love hate relationship with the football team, on the one hand we brought a majority of the crowd with us, on the other we were, apparently, annoying somehow? So to say the least I loved my band. Starting my freshman year I would go an hour before every practice to help set up stands and chairs to help out and give back. Through this, I really became friends with my band director.
As you might imagine, being a member of a band might become harder when you have trouble standing and walking among other things, but it was something I stuck through the rest of my college years. It was something I was committed to because it made me feel good about myself. I continued to show up early for practice, I missed less than five practices my whole time there. I may have had classes that I couldn’t make it to (timing mattered) but I always drudged myself out of bed and turned up for practice. And every time my band director and others would ask me how I was, I would honestly answer “Oh I’m nauseous and dizzy, but I’m fine” and would continue working. Or sit down, one or the other. During one of the concerts I had an incident that was similar to a panic attack, but ended up just being my POTS rushing back. I don’t think it was the concert itself, I think it was all the other stressors I had been dealing with. There also came a time where my hands started to turn purple as I played, so I learned to just take breaks and give most of my solos away. It only took two and half years after graduating that I started to play again, it was really difficult but I missed it, but you know what I really missed, being a member of the best band ever.
I’ve been a dancer since I was two years old. That’s not to say I was ever the best dancer or even a great dancer. I had eventually joined a competition team in my youth (yes like Dance Moms, no it’s nothing like Dance Moms). It definitely taught me how to have a thick skin and to work hard, and I appreciate both. But for me I just loved the art form, the creativity and the performance.
In college it was more difficult to dance, there was only one group that had you tryout for dances every semester. Once you had done it once, you could also choreograph. I loved dancing and so I put up with whatever I was able to get. The thing I most appreciated about this group was the big performances put on, get me on that stage and I was elated! My sophomore year I choreographed a piece, but due to semantics no one wanted to stay the seven hours just to try out for it. I was upset but then I tried again my junior year and I got five wonderful dancers. Most of them may not have had the training, but they all tried hard, and what more could you ask for? So, this dance group allowed me to do what I wanted, perform and create, but then something else caught my eye.
One of my best friends had asked me to see her perform in a variety show put on by her Chinese culture group. So I went my sophomore year and it was fine, there were a lot of dances that I’m sure incorporated plenty of traditional Chinese dancing but everything felt so slow. That’s when I decided I was going to choreograph a dance the next year and it was going to be “peppy”. This was the biggest task I had taken on dance wise. I had decided to put on production number to a Chinese version of “Wavin’ Flag”. I had to imagine where everyone was going to go and how many people were going to do things and also, what could they do? I was lucky enough to get over twenty eager dancers. Not one of them had formal dance training, but I was okay with that because I wasn’t there to put on a professional performance. I was there to have fun and allow my dancers to learn and have fun. In fact, I was kind of told that I wasn’t being strict enough. But throwing yourself into something you’ve never done before is brave and so if you were trying and you were enjoying it that was good enough for me. Well no quite, I did really want them to hit their marks for the performance (and smile!).
It was the semester that I was teaching this dance that my intense stomach pain/nausea began. I continued to have it until my doctor diagnosed me with Hashimoto’s and Lyme at the same time… in July. So I rarely felt good, it just never went away. I was always tired too. But I wasn’t going to let it show. Maybe four of my friends even knew about it and that was because I was spending long periods of time with them doing homework. So my dancers never knew. I was always cheerful, even when I was correcting their mistakes. I never wanted anyone to feel bad when they were trying hard, because I knew what that felt like. I would give them water breaks and take a minute to collect myself, making sure I wasn’t going to throw up (I never did). Honestly, this was one of the first experiences where I put a giant smile on to cover up an illness. I remember the day of the performance, we had a rehearsal early and then were free to leave and come back a few hours before the show. I was going to go sleep and writhe in pain, but as a choreographer I had another duty in the middle of the day, so I slept, writhed, left, came back, slept, writhed, and then performed. I loved it. Unfortunately, that was not the worst day I’d had before a performance.
The next two years I continued to choreograph for this group, but by that point everyone knew I was sick. I would still show up to class and try really hard to not be sick. And I still spent hours in my living room making up dances even when I could barely stand. It’s not like I took on easy dances either, but I loved doing them and that got me through it. By my last year I was fairly confident that on “Flagyl Weekends” I would barely be able to stand. I thought I would cancel class these weekends, but instead I spent a half hour getting myself there and would direct from the floor. Yes, I laid on the floor and taught the class, because practice makes perfect. Okay, practice makes you better and that’s just what my dancers needed. The day before my final performance we had a dress rehearsal, I did my dance once and that was apparently the worst thing I could have done. My joints were in so much pain it wasn’t even funny, I can’t remember if I cried but I surely wanted to. Luckily my parents had come up for the performance so they were able to get me to and from campus. The next day I spent lying down with heating pads and cold packs all over me. And you know what, I think my dance went pretty well and it felt so good that I had done it.
Now that I’m out of college I just don’t have those opportunities, much less the energy. I still hear songs and start choreographing dances that will never be performed. I still stretch and can mostly do my splits and kick my feet above my head. I still go and support those dancers I know who have yet to graduate high school. I still watch the videos of me dancing. And I know that I am still a dancer.
Positivity Ain’t my Thang
Every time I go to my LLMD, it seems like maybe in six months I might be better. The first time I was, but then a change in medication changed my status. I’m usually hopeful after leaving my appointments, but then as the months go on and my status continues to waver I know that I have to try for those next six months.
Dealing with this illness is hard, especially when I do have the common coinfections (Babesia and Bartonella). They make it that much harder to treat. None of this is to say I don’t have confidence in my doctor, I always feel that they are on the cutting edge of treating this illness and yes I am a guinea pig. My doctor treats with pulsing antibiotics as well as with countess herbal remedies and supplements. I even did IV antibiotics. Worst eight months of my life, but entirely necessary.
Before the IV treatment I had some pretty bad neurological problems that had been festering and getting worse for at least a year. The antibiotic regimen the put me on made it so bad that I had short-term memory loss and could barely think enough to speak at times. Then came the nausea that was so bad I could hardly sleep at night. Then came the vomiting that was so hard it caused petechiae around my eyes. It basically ruined my stomach which is only now getting better, a year later. I’m not telling you this to scare you. I telling you this so you know. But you know what else you should know? By the end of my treatment all of my symptoms were gone, except mild POTS (well sleeping a lot). And you might be thinking that is not cured, but you know what I AM THINKING. I can speak and hold conversations. The physical symptoms, yeah they weren’t all gone and yeah the POTS has gotten worse and the arthritis in my hands and back has returned and I still sleep a lot. But it felt so bad to not remember things or speak well. If you have Lyme and are just nodding your head in agreement, trust me the pain is worth it.
Now that you know what I’ve gone through, here’s what I want you to know: I feel like sh**. Not just physically, but mentally. And I do have some good days and I try to make the most of them. But, I feel like there is a hole where my life is supposed to be. I want to have a job and friends and make my own mistakes. But instead I’m sitting here writing this, sitting next to my cat, reminiscing and reminding myself about everything I’ve gone through. Maybe I should feel like a brave little warrior. But I don’t, and that’s okay. I feel helpless and maybe a little depressed, but pretending to be positive… that’s not going to help me get better. I feel like I should be real with my feelings. Heck, I wasn’t even a super positive person when I was well, and trying to be what I’m not when I’m sick would drain me and perhaps make me feel even worse inside. So I’m here to tell you, it’s okay to feel like sh**. Don’t be mean about it, just don’t pretend it’s not there all the time. Pretending some of the time is okay, no one wants to feel always feel like sh**.
I am lucky. Well, I am luckier than perhaps a lot of people with Lyme. My parents are financially stable and so I am able to live at home on their insurance. And as many of you know insurance still doesn’t entirely cover the costs of this illness. I never would have been able to get my most harrowing treatments if it weren’t for my parents.
It’s not just the monetary support though; they care for me so much. They let me live with them and I know it’s hard to see me in an unwell state. They insist on coming to every doctor’s appointment with me, even though I know it can be hard on their schedules. My parents and my sister were basically my nurses when I did IV antibiotics. My sister has also stepped up in taking me to other appointments like physical therapy and getting weekly IV fluids. I am just so grateful for the care and support they have shown me and I’m not sure that they know that enough.
Then there are the few friends who have really stuck with me through this illness. They’ve seen me at my worst and don’t expect me to be more than I am. They listen to me properly; I don’t feel obligated to tell them “I’m fine”. I only hope that I’m as good of a friend in return, because I couldn’t ask for more from them and only wish we lived closer.
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