HELLO IS ANYBODY OUT THERE…..

PaperArtist_2014-02-13_17-27-43Ground control to Major Tom, HELP…..

So I have tried to get in contact with everyone from my fav bands, to Ellen..I get that these are very busy people and pretty positive that they don’t even see what I am writing..But HELLO, FATAL DISEASE HERE… I don’t want my name known or to get any money, I simply want CF to gain popularity…Right now CF is that quiet loner in school that no one really notices unless it is in thier face.. This is sad for many reasons…

1…Are we not alone enough, not being able to be in the same room with another with cf. having the support online is great, but there is nothing like getting to know someone face to face. Which will never happen!!!. This is due to the fact that every individual person with CF carriers their very own bacteria that could cause great harm to another…This does not affect anyone without cf, so no worry there.

2…We are secluded in the hospital (which I do like the private room) we are secluded in clinic, and we get secluded in public due to our lovely hacking cough… It is funny that my hubby and kids find me in stores by my cough.

3… I have to put myself in a bubble per say, well still trying to live…I have secluded myself from gardening, I happen to get pseudomonas infections every spring from gardening…I have secluded myself from public pools, hot tubs, heck even cleaning fish tanks… Just in case….

All I ask is for some CF publicity to make it well known.  People are not going to help with something they know nothing about…

I am really hope that not just people with CF are reading this, cause we all need to….

SPREAD THE WORD…CYSTIC FIBROSIS IS OUT THERE………………

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2 thoughts on “HELLO IS ANYBODY OUT THERE…..

  1. It’s very interesting that I never realized all the things that you are secluded from. All the things that we take for granted. I love learning (through you) about CF and what your going through. The other that caught my eye is how we locate Mel in stores, is by her breathing tic. We are not alone , and I’m beginning to feel a camaraderie in sharing. Thanks Jess. Love your posts

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