The chance of winning the state lottery is one in a million. Well, I didn't win that unfortunately, but I seem to have won the genetic lottery.
In exactly one week it is rare disease day and I will be celebrating with the National Institute of Health (NIH).
I have a currently undiagnosed neurovascular condition that has been getting extremely worse over the past year. It was the reason for my brain surgery, it is the reason I've been on two blood thinners for approximately a year now, the reason I had to stop driving, the reason I could not take standardized testing for college, and the reason I can no longer do many of the things I love. Even reading, writing, and speaking - my passions - have been stolen at varying levels.
In my search for an answer I participated in an NIH research study. Based off of two vials of (incorrectly completed) blood work and no other knowledge about my case, the NIH fit me in two weeks after seeing the results. For those unfamiliar with the NIH, it can take months to even get on their waiting list, let alone to be seen. But I'm an odds breaker (yet again), so I might not get into college, but I got into the NIH without even applying.
I am equally excited and nervous. I'm trying not to get my hopes up because I know the crash will be devastating, but it's hard not to. The only appropriate way to handle this is by laughing at life on a park bench. Oh, and eating cookie dough. Lots of cookie dough. This has been a rollercoaster of a year and it feels like there is finally some overdue upward movement. I'm cautiously optimistic.
I plan to document my NIH stay through my blog here when possible and through social media. Be sure to follow my Instagram/ Personal Twitter @shirastrongin and my new Sick Chicks dedicated Snapchat @sickchicksshira to stay updated.
Sometimes life hands you lemons, other times life hands you lottery tickets. My life has been full of lottery tickets, this is just the next one, so bring it on.
One in a million, yup, that's me.
Xoxo,
Sick Chick