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

Comments

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

    ReplyDelete
  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).

    ReplyDelete

Post a Comment

Popular posts from this blog

CF isn't all tears and saddness. Get a Full Picture.

  CF and Laughing Cystic Fibrosis can bring sad times and times of tears (like losing a close friend with CF, etc) BUT, it can bring so much joy and love. I've noticed most people love to talk about the people they meet while traveling. This is usually, because they have learned something from the person. Or the person is considered unique to them. I can do the same thanks to my Cystic Fibrosis. I may not have traveled much in my life thus far, but I have learned mountains of lessons from my CF. [Picture right:  Me ready for surgery in 2nd grade!] Forgive my shoutouts (but I must recognize a few amazing people) I have met some of the most amazing doctors: Chatrath, Dr. B Nurses: Sara & Marie (from Clinic), Lizzard, Melody (best IV stick ever), Deb, and Kris (you know a nurse is amazing if you love her after putting tubes down your nose!) Respitory Therapists: Jeannette, Lanell, and Don (you da Man) And Cookie Marrow (Musical Therapist- She would sing to me a...

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...

How Fostering and CF impact my work

I haven't been on my blog much.... I think that is because most of my blogging is currently been done on Health Union's Cystic-Fibrosis.com (here is link to all my posts on their site: https://cystic-fibrosis.com/members/cherizkunkel/ ). I decided last fall to step away from real estate after 3 years in the business. It was tough to say good-bye, especially since I had tripled my volume and business in the last year. However, I didn't have time to add any new clients; I kept saying, maybe next week, next month I can fit more work into my schedule. The truth is fostering takes a lot of time. We have between 5-8 monthly visits at the agency, 1 court ate a month, 2 home visits from the caseworker a month, plus e have 2-3 doctors/specialist appointments for our current kiddo. We have lots of paperwork we fill out, gas mile logs, receipts to add, and more! Our kiddo also participates in gymnastics and dance two nights a week. We go to a fosterparent support group with our kid ...