Gathering My Thoughts

To start things off, for those of you who don't know me, my name is Nicole, I'm 24 years old and was diagnosed at birth with Cystic Fibrosis. I have always been fairly healthy my whole life despite having CF. It wasn't until recently that it seems everything has come crashing down around me, and it has really made me take another look at things.


What DOES it mean to be 24? What SHOULD life be like for people my age? I always pictured that this period of my life would be the time for taking vacations, getting married, starting a family. It should be time for laughter and fun and making lifelong memories with friends, family, people you love. And although CF doesn't STOP you from doing these things, it definitely makes them difficult.


So what IS life like for a 24 year old CF'er? For me? Like I said, I have always been fairly healthy, but over these past few years, it feels like I am literally just sitting here watching my lung function drop.. 80%...70%...60%...50%...40%...30%...monthly trips to the clinic, PICC lines and IV antibiotics for weeks.. months at a time. Home care, oxygen tanks and steroids. People all around you waiting for, or receiving double lung transplants. It all becomes so overwhelming, and sometimes you just sit paralyzed with fear, not knowing what is going to happen next month, next week, or even tomorrow ...


And then it all came to me one night when I was sitting in my hospital bed. There HAS to be SOMETHING I can do to fix this. I started to look at my body as a machine that I was living in, and machines CAN be fixed. I decided then and there that I was going to do whatever it takes to get myself out of this horrible mess. I got up out of my hospital bed that night, cranked up my O2 tank, and started jogging on the spot. The first night I only made it 4 minutes, but I could already tell it was starting to help. The next day I made it to 6 minutes. After only a few days, I was up to 20 minute cycles 3 times a day and was feeling awesome. Within 2 weeks, my lung function had went from an all time low for me at 36%, back up to 53%, and I no longer needed the oxygen tank (thank god!). I do admit that I have somewhat slacked a bit on my jogging since (due to some bone/ankle issues) and have slipped back down to the high 40's, but I am not giving up! And jogging is just the beginning! I WILL fix this!


So I am starting this blog to share my story along the way (and of course my successes,because I KNOW I will have them), and to hopefully give hope to all the other CF'ers out there. This is going to be a long, bumpy road for all of us. Hold on tight...
Goodnight