My Story

WELCOME TO MY WORLD! Thank you so much for swinging by my page and seeing what I’m up to in my journey through life with Cystic Fibrosis.  I have a passion for spreading the word about CF and that life doesn’t have to end because of a diagnosis.  I have made it this far and I am not stopping here.

The short version of my story…I was diagnosed with Cystic Fibrosis at 5 months old through a positive sweat test. I started needing IV’s and to be in “Club Med” for “tune ups” at 13 years old and it hasn’t stopped yet! Yes I have my days of “this really sucks” and I don’t want to do this anymore and I don’t want to be sick anymore, but I think that is a given when someone has a incurable disease. I am thankful for everyone in my life that loves and cares for me! Life has ups and downs I just try to deal with them as best I can. I take life one day at a time and plan for the future!  Yes, there are a lot of times that I need a little push or even a kick in the butt to get or keep me going.  As my CF progresses the reality of all of this is right in front of me.  Lung transplant is an option in the future and we are already doing our homework to be as prepared as we can be. It is not necessarily going to be an easy road but it is one that I am willing to journey down.

On the family note: Really long story made very short.  My husband and I reconnected after 15+ years in 2006 and got married in 2010.  He is active duty in the Air Force.  I am truly amazed everyday at where life has brought me!!  I am a “bonus mom” to two “bonus kids” whom I love very much.  I am also mama to two furry guys, Squiggy (Shih Tzu/Lhasa Apso mix) and Otis (Shih Tzu).  Dreams do come true and anything is possible!  Living the fairytale!

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Meeting Frank White of the Royals while I was poster child for the CFF.

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It pays to have your grandma work for the local new paper. 😉

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CFF poster child 1985-1986

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Spread in the CFF Ball Booklet

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My note in the CFF Ball booklet

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Letter from Ewing Kauffman, owner of the KC Royals in 1985

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another bonus article

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Chairman of the CFF at the CFF Ball in 1985

2 thoughts on “My Story

  1. This is inspirational for me. Having to “kids” with cf (19 and 22) I know the struggles we all go through….especially them. Great to see you’re living a ” normal” happy life. And I agree, yes it does suck sometimes, but then again it does for everyone. 🙂

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