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Saturday, January 21, 2012

At Our Fingertips

Hello World!

Cystic Fibrosis is a mean disease - I don't think there are any nice ones - but CF has been a real bitch lately. Not just for me but many of my Cysters and Fibros (as we sometimes call each other). Before I joined twitter a few years ago I didn't know anyone, other than my brother, who had CF. Now I know TONS of people. Siblings, friends, parents, and of course CFer's themselves. Its crazy!

Its also bittersweet. They say ignorance is bliss. Well I was never ignorant to Cystic Fibrosis but I was never waist deep in the CF pool either. I was always sitting on the edge with just my toes in the water. I'd hear about stories on the TV news or read about it in the paper. But it was always just "bummer" because they were just names to me. I didn't know them. Sure it was sad to hear about them passing but it didn't really effect me. Now, I talk to other CFer's and people connected to CF everyday, I'm swimming along right beside them.

The last few months have been incredibly hard for the CF community. I have read about several passings.. and I mean several. So many I've lost count! They all seem to be young people too.... 20-30. Come on! Thats my age range! That's scary. Everyday it seems like one of my CF friends are heading to the hospital for a tune-up. I, myself have been like 6 times in the last 2 months. I'm so glad I've met all these great people (the sweet part) through the Internet but reading about someones passing means more to me now (the bitter part).

Whenever I feel like CF is starting to get an edge on me, I love to read "No Ordinary Boxing Match." I'm going for the gold!!

Not Your Ordinary Boxing Match
Having several fatalities under its belt Cystic Fibrosis remains the undefeated champion. Life with CF is like a boxing match. Except the rounds last for months and the fight goes on for years, not just an hour or two. Like a boxer training before and after each fight, we do our training before and after each day. Only instead of being in a gym working out with weights, we're at home taking a handful of pills and doing over an hour a day of nebulized breathing treatments and vest therapy. We fight as hard as we can, but no matter how hard we punch or jab at our opponent, it hits back harder and harder. Then just when we think we have the fight under control and doing good. BAMM! Out of nowhere comes an uppercut, then a right hook and a left and blow after blow. Then just as our opponent has us against the ropes getting ready to deliver the final uppercut to put us out and win, DING! DING! the bell rings. Its the end of the round. Instead of going to our corners to talk to our manager and get some water and clean up, We go to the hospital to talk to our doctors and get some IV antibiotics and get cleaned out. After 2-3 weeks of that, DING! DING! we get out and start next round. Like a boxer going into the round with a little rest and a few jab wounds, we start out strong, then it turns into a repeat of the last round.Then after round after round it is the same thing, like a boxer getting beat up more and more, getting weaker and more tired as each round passes. You keep fighting the best you can. But like a boxer in the final rounds you begin thinking, "Should I give up?" "Should I throw in the towel?" Like a boxer who really wants the champs belt, the answer is no. You keep fighting as hard as you can fight and say to yourself, if my opponent wants to remain the champ, he is going to have to earn it, because we're not going down without giving it our best.

I began my fighting career almost 29 years ago on April 30,1976, the day I was born. Though I know I will not be able to defeat my opponent I know it someday will be defeated and people like me will not have to spend their lives fighting each day they live or for each breathe they take because they will have the cure to defeat the opponent. I just hope they think back to those of us who gave our lives, to be studied and monitored and fights be documented by the CF team so they could find a way to defeat CF and say Thank You. ~ Jamey Carver

This was written by a fellow CFer. He lost his fight against CF on June 3, 2006. While I never knew Jamey, I read about his story on a website that was submitted by his sister, Megan Carver. She wanted to share her brother's inspiring words and create awareness for CF. She continues to fight in Jamey's memory.

To all the CF Angels, we will continue the fight. We have CF up against the ropes with Kaleydeco. A cure for all is at our fingertips.

Breathe Easy


  1. Thanks Jess for giving us an insight into your life WITH CF good reading…Michael MG177

  2. It really is bitter sweet to get to know others with CF. You are inspiring to me, and I gave you an award on my blog. Here is the link: