Today, I had the chance to escape the same four walls I've been staring at for the last several weeks. The same four walls that have guarded me against everything and everyone in hopes of staying healthy. If these walls could talk, they'd tell a tale of a girl who stayed in her pajamas for days at a time and ate her feelings in doughnuts and coffee. It would be a pretty anticlimactic and boring tale, but that's just because it was the current state of her life. Anticlimactic and boring. Yet, through it all, she still tried to find happiness in the smallest of things.
Well, it's official. I am literally worth [half] a million bucks. Spread the news. Shout it from the rooftops. Tell all the single fellas out there that I'm a precious, rare gem who’s looking for love and measures her worth by the amount of Spinraza doses she has received. Yes, that's right, ladies and gentlemen. Yesterday, I received my fourth and final “loading” dose of the new treatment for SMA, and at $125,000 a shot, I can now technically say this little body of mine is worth half a million dollars. As exciting and wonderful and promising as this may seem, now more than ever, I'm scared.
I woke up the other morning feeling frustrated and discouraged about not seeing any measurable progress from this treatment thus far. When my mom came in my room to get me out of bed she said, "be positive, Alyssa. You have always used positive thinking to get you through the hard times." She was absolutely right. I've always been a firm believer that thinking positively is half the battle in overcoming any sort of obstacle. After all, it has been my tried and true method for 26 years. But, that morning, all I wanted to do was stay in bed until the day I woke up finally feeling stronger.
Hi, everyone! For the past few weeks, I've been receiving so many awesome questions about Spinraza and my experience with it. So, I thought I'd take this opportunity to write a blog about your frequently asked questions in hopes of providing more insight into this treatment.