Saturday, October 27, 2012

Speaking Up!

Speaking up about my CF: Why Now?

Well, why not? First of all, I grew up in a small town and everyone already knows I have CF (for the most part). So I never thought about awareness and advocacy much.  It hit me while away at college that nobody knew I had CF. So instead of going home to do meds, I would just kept hanging out with friends.

I was so sick during those years and that is one of the main reasons my lung function dropped to the 30%s.  So I started to share that I had CF with some people, close friends, etc. They eventually convinced me to do some Stand-Up Comedy about it to raise awareness. So I auditioned and made a show for the Big Ten Network. I announced I had Cystic Fibrosis on T.V.

Click here for youtube of Clippings from that TV show :  Click here for youtube version of my TV debut doing Stand-Up!  (bare with me, its my first time doing CF Stand Up. I start about 10 minutes into the clip)

My CF ddin't seem to bother anyone. I just don't hide anything, I don't see why I should. I now bring my nebulizer machine into backstage during shows to do my nebs, and I take my pills no matter where I am at now (as long as I don't forget them)

I now post about CF on Facebook, blog about it, talk about it, and try to share about it as much as possible. 1. I'm not ashamed of it 2. Spreading awareness, helps raise fundraising/research for a cure 3. I want to be a role model to others with CF and show them that is okay to share about it.

Also, the truth is the older I get the more I have to fight my CF to stay on top of it. Since, I have to work harder to stay healthy, I want more people to hear about CF, and (of course) find a cure someday. Whether there is a cure in my lifetime or not, I want to know that without a doubt I tried my hardest to help find a cure and that if/when a cure is found, I know I did that tiny bit to help find it!

I got an email from someone asking me to be a speaker for a CF gala next year and I hope I do get the opportunity to speak. Because I'd love to continue to give back to the doctors, nurses, and staff that continually help us everyday to fight!

Oh, and incase you are wondering... Dr. B got my TOBI!!!! He got it approved somehow by the insurance! Total Count of meds he has gotten me in the last year Dr. B = 4 Insurance= 0

2 comments:

  1. awesome! I loved seeing this, you did an awesome job and (not to sound condescending) but you are cute as a button!!!

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  2. Aw, thanks! I love doing Stand Up Comedy! I haven't done it in a while, I've written some new stuff, but need to find time to get back on stage to perform it! Glad you enjoyed and thanks for thinking I'm cute! (and who doesn't like a compliment).

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