Happy April 28th! Also known as the anniversary of the day I was finally diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). Seven years ago today! I was fourteen at the time, so you can imagine how much has changed. For one, my health has gotten worse. Partly due to my body sucking and partly do to not having gone to see a POTS doctor in 2+ years. (I know. Trust me, I know.)
Of course, I as a person have also changed. I’d be more concerned if I hadn’t changed at all, to be honest. In April of 2010, I was a freshman in high school and two months into my first relationship. It was the second semester of school, and I’d convinced my mom and my team that I was able to go back to regular classes with everybody else. Though I gladly accepted accommodations like delayed openings and lighter schedules, and still had classes at home a couple of days per week to catch up on what I missed. Sure, I missed more days than I was able to attend, but I’m still proud of myself for trying.
Up until I was diagnosed, I had been on the train of medical discovery for two years and four months. At times it felt like it would never happen. That maybe it really was all in my head, and though it felt real to me, it wasn’t. I’m not going to sugar coat it. There were nights where I would be talking to my mom about the next specialist we were going to see and I’d break down crying because it felt like that living nightmare would never end. My middle school was fighting with us, basically telling me I was faking it to be able to stay home. I was falling dangerously behind in my classes because I couldn’t drag my body out of bed long enough to go to school. There were a handful of truancy officers called to our home, where they grilled my mom about why she was letting me stay home all the time. I’d act like I was sleeping, but I heard my mom break into tears at each visit. I know it’s their job, but it wasn’t her fault that I was sick and nobody knew what was causing it… The seventh and eighth grade sucked. Sixth grade wasn’t so bad, though.
By the time April 28, 2010 rolled around, I’d become numb to these appointments. Besides, no test could be worse than that lymphoscintigraphy I was put through at some point in those two years and four months. You’ll just have to trust me on that one.
If you’d like to read about my appointment (for POTS, not Lymphedema, which, as it turns out, I do not have) you can go here!
I’m not gonna lie, it’s been a long and emotional journey to get to where I am today. Accepting my new normal was hard at fourteen, especially dealing with the things that went along with it, like losing friends and not being able to do everything a healthy teenager is able to. So, no, it wasn’t a walk in the park- Okay, that was poor phrasing considering I’m bedbound… You know what I mean!
My point is, no, it certainly has not been easy, but I am who I am because of what I’ve been through, and that’s alright in my book. Before I go and schedule this post, I’d like to tell anyone still searching for their diagnosis to keep going. And definitely get second opinions if you feel the need because if my mom and I didn’t go with our guts, I would have accepted a diagnosis of Reflex Neurovascular Dystrophy (RND) and I would’ve thus been forced to go through an awful physical therapy boot camp that would’ve left me feeling even worse than I did at the time (because I do not have RND, I have POTS).
On that note, I’m gonna go. I hope you’re having a semi-okay-ish health day!
EDIT: It has actually been six years, not seven! My mom and I get this wrong every year, oh my goodness.