Happy New Year readers! I wanted to post something sooner, but it just didn't happen. I’m starting this year off by feeling very happy, hopeful and grateful as a medication is working through my body to treat SMA or stop the progression of SMA. Since my last post, I've had all 4 of the initial … Continue reading Livin’ in a New World
I think going into the unknown, is one of the scariest things in this life. When you think about it though, everyday we don’t know exactly what’s going to happen. I guess when you have to sign consent papers, it’s a little extra scary though haha! Last Tuesday morning, September 26th, I woke up ready … Continue reading No Risk, No Reward.. First Spinraza Treatment!
As most of you know, ever since Spinraza was approved by the FDA in December, it’s been a crazy up and down ride with so many emotions and concerns. I think most would agree that when this treatment was approved, we had no idea what a process it would be to actually receive it. I’ve … Continue reading All I Want is to Have My Peace of Mind.. and Spinraza
I try my best to always stay positive and I’m really trying my hardest right now, but it’s tough. Our healthcare system in the USA, when it comes to receiving medication, sucks. On the morning of my 31st birthday, I was told by my neurologist that they had received my first official denial from my … Continue reading Every Setback is a Setup for a Comeback
Hi everyone! Just thought I'd put an update out there on this bout of bronchitis. You know that scene in Zoolander where Derek has that whimpy cough and well, he thinks he has the black lung? That's my cough when I'm sick... hahaha ok maybe not that weak, BUT pretty close. I just think of … Continue reading Sunday Bumday
I want to document what my life is and always has been. Hoping, that one day, this all will change.