Before I get to the main focus of this post, I have to just say one thing that’s been on my mind: I will NOT let this disease get me. I refuse to believe that I will die from cystic fibrosis. And I’m going to keep myself as healthy as I can to make sure I’m around WHEN a cure is found, not if.
I’ve made it a point not to let having cystic fibrosis define me or rule my life. Sometimes to a fault. There’s a fine line between doing what you can to maintain your disease and letting it control you.
I’m sure those that are in similar situations have their own ways of thinking about this. This is mine. I just believe that living into your disease, assuming all the bad things associated with whatever ailment it is WILL happen, is no way to live. Self-fulfilling prophecy, as they say.
Okay, rant over. 🙂
Let’s see, where did I leave off?
Ah, my last Hopkins appointment. Well, it went okay. Scratch that, it went terrific. My lung function went from 64% to 71% – I’m now back to where I was seven years ago. And considering this is a disease that gets worse with time, that’s pretty darn good.
But I want to do better. So I’m trying to get my compliance from 80% to 90%. As well as get back in my workout routine, which I’ve been neglecting since the 5K.
My next appointment is on May 25, just a little more than a month from now. And I’ll be sure to let you know how that goes. Here’s hoping for 80% lung function! And if I get there, I might just get a puppy or a tattoo… right, Mike? 😉
This is my first time speaking to such a large crowd (around 300 people!) and I’m incredibly nervous.
When I was first asked I considered saying no. But the more I thought about it, I realized what a fantastic opportunity it would be. And if fear was my only reason for NOT doing it, well that wasn’t enough of a reason.
I’m excited to share my story. But more importantly, I can’t wait to get people EXCITED! A cure for cystic fibrosis could be found in my lifetime, and those that donate to the cause now could be a part of that.