Skip to main content

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

Labels:

Comments

  1. Glue Meets PaperMarch 18, 2014 at 8:54 PM

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

    ReplyDelete
  2. CherizMarch 23, 2014 at 1:27 PM

    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).

    ReplyDelete

Post a Comment

Popular posts from this blog

Today's BIG Appointment

 I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me. So this last weekend I took my vest machine, wabi sterilizer system , and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL   On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least). I knew I was feeling a bit better than before, but wasn't sure what to expec...
18 comments
Read more

Beginning of the Year Troubles

Normal "beginning of the year" troubles for Andrew and I only really consist of one topic: Our Deductible [please no Obama, or government bashing] I've always had high deductibles ALL MY LIFE (no matter who was president). The problem is I hit my deductible within the first week of January. In the past I have always prepared for this and since I was still on my father's insurance (up until last year) he typically paid the bill (at least for medical stuff). And in the future Andrew & I won't have such an issue with this. We will be able to save and plan ahead for the $3,000 (for my deductible, his is another $3,000). However, this year was more difficult. We saved all 2013-2014 for our wedding & honeymoon, plus had our deductible saved too. But Real Estate was a pricey career to start, I've put almost $5,000 into it (classes, dues, licensing, exam, advertising, etc). So needless to say our deductible disappeared, thanks to my new career. Wh...
10 comments
Read more

Video Blog: Life in the hospital (as a child)

The daily life in the hospital! Most people cringe at the idea of a hospital. However, when I was little I never minded going into the hospital. I usually would have at least one other friend with Cystic Fibrosis to hang out with there (before we knew about the "CF Bugs"). I didn't love being sick, but I loved my CF friends that I would hang out with. Also the hospital, nurses, and my parent's tried to make it a "normal" environment. I got up and put on cute clothes, "walked to school", flirted with a couple CF boys, did homework, came "home" (back to my room), my friends would ask my parent if I could go play with them. We'd hang out in the play room or go on a walk with one of my parents! My dad loved taking me on walks and I LOVED going on our walks! Here is a video blog of the route we took and bit of information on what is was like growing up (for a chunks at a time) in the hospital! (it is posted via youtube, let is dow...
3 comments
Read more