Wednesday, December 4, 2013

To be continued...

Fighting to live is the only thing I know lately. I see the way this cough makes others stare, maybe out of pity or fear but the stares are always the same. I pretend like it doesn't bother me but it does. I always wonder what they want to say to me? I wish they understood the hurt behind these eyes and the pain in my voice. I'm just trying to live a normal life. 

I see 50% lung function on my printout and part of me wants to scream but I mostly want to cry. If this is 50% I don't know how I will handle 40% or 30% I'm just not strong enough. My body can't handle those numbers and I don't think my heart could either. 

I'm having trouble with my port and I need to see if the infusion center can get it to work tomorrow. If not I think it's possible I'll just throw a hissy fit; a full blown kicking the legs flapping of the arms crying and being un controllable mess kinda hissy fit. 

I hope that doesn't happen for the sake of others and for workers who surely will remember me next appointment . 

If I see pneumonia on my x-Ray I'll definitely feel like I discovered my magic powers...being so in touch with my body it tells me when there is a problem and what to do. If that's the case I'm going to need a super power outfit with a cape ( I have always wanted a cape)

So tomorrow it could be a really ugly day with tantrums and body limbs failing and tears.  Or it could be the new beginning of a super cystic fibrosis super hero who uses her powers for good and has an amazing cape. 

I'll let you know how the day goes.... 

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