About Me

My photo
I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Friday, May 1, 2015

May is...

It's been a while, I've been busy and exhausted and busy again and exhausted again. (Rinse and repeat)

May is Cystic Fibrosis awareness month! I was going to post my daily routine and tell you how many pills I take. But after reading a friends post on face book, I realized that all you know about me is my struggle.(Unless we have met personally) So instead I want you to know that I love my life. I have wonderful husband who takes care of me (and works full time), I have a witty and intelligent daughter who makes my world a brighter place every day, I have great friends who I can always count on to make me smile, and my family is full of awesome people!

My life *IS* a struggle, but so is everyone else's. My struggle is not the same as yours, and the two can not be compared. Your struggle is just as valid as mine.

Cystic Fibrosis is a genetic disease that affects the lungs and digestive systems of approximately 30,000 children and adults in the US. We all take many pills every day and do treatments resulting in hours of our day spent on "maintenance". We need a cure because this disease still cuts lives short. CFF.org is a great foundation working to find a cure. They have helped to fund a drug that is out now called Kalydeco, which is doing wonders for a small group of us with a specific mutation. They are currently funding the research and development of a medicine that will help a larger group as well. BUT neither of these things are a cure. So we can still really use donations.

I am more than CF.

I am a mother. I am a wife. I am a daughter. I am a sister. I am a friend. I am a Godmother. I am a good person. I am strong. I am funny. I am a bird watcher, a dog lover, a "ghost hunter", and a gamer.

There are so money facets of me and cystic fibrosis is just one of them.