Thursday, December 19, 2013

part 2

As I suspected I'am a super hero. 
I knew I had pneumonia and my X-ray confirmed it. I can't explain the feeling of knowing something is wrong with your body it's like a whole different sense. It's weird but I'm glad I have mastered my super hero skills. All I need is tights and a cape (hint! hint! I want a cape!) 
My lung function took a hit as I knew it would. 45%. The lowest I have ever been. It's hard not to take that number and not let it consume me. It took a lot of me not to cry when I saw that number. That was 3 weeks on ivs. Talk about a blow to my ego and lungs. 
Fast forward to now and numbers are up to 57%. After 4 weeks of ivs 2 oral antibiotics and a round of steroids. We're giving my body time to get all the medicine out and let the kidneys and liver detox and we will start over in a month. We will just hope for better results the second time around. 
I'm struggling friends...I just can't keep doing everything I'm asked and keep going down hill. I'm trying to find patience in this mess but all I'm coming up with is anger and frustration. I get like this at times. You have to loose yourself today if your ever going to have it all together tomorrow. 
It's Christmas time and I wish I had joy and all that crap but I don't have it I'm just glad to be here and that's good enough for me. 
Peace love and hello kitty 
Xoxo Jess 

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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