CF Awareness Video

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Best Day

Am I a horrible person because I don’t believe that “my donor’s worst day was my best day?”   One, it doesn’t make sense – not literally.   My donor was brain dead several days before I was transplanted.   I assume that was the worst day for his family and loved ones.   And while I feel very blessed to have new lungs, beyond grateful to my donor who decided to save the lives of strangers he would never meet, I wouldn’t say my transplant date is “the best day of my life.”   Life-changing, yes.   I received the gift of life.   And it’s incredible, amazing, and beyond words.   But all I remember from that day are going to surgery, and a little bit when they woke me in the ICU to prove to my family I was still there.   They woke me long enough for me to open my eyes a little and squeeze hands.   And honestly, is it the best day of my family’s lives?   They sat around, waiting to hear if I made it through surgery.   If I was expect...
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A word about my sinuses

Ow. (Note, this is not a complaint. I am simply stating that I am currently in a state of pain.) WARNING: EXTREME AMOUNTS OF SARCASM AHEAD. Even though the pain is so bad I can barely stay awake, I am still able to run and jump and sing and dance (because, DUH I'm addicted to running and can't stop... I LOVE my lungs and all they do for me!) and I will be doing a marathon soon, so watch for that. I will be DANCING the marathon, and singing the whole way. What do you think, should I sing Hannah Montana??? And High School Musical??? Whadda ya think??? And since the only thing that seems to help the pain are my migraine pills, I will be popping them like candy. I will put them in rolls and eat them like Smarties. Mmmm Migraine Smarties. Never mind the fact that you are never supposed to take more than 2 in a 24 hour period. I need them to stop the pain of the goo oozing into my brain, so I'll eat them like candy. And maybe it will kill me, so despite the fact that I a...
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Change of Plans

I had my weekend all planned out, and all I had to do was last through it. I knew that was going to be hard when I realized how bad my lungs were on Tuesday. Dancing was nearly impossible. Yesterday and today I have worked hard to get things ready for the benefit tomorrow night - and I called clinic and we arranged for me to be admitted on Saturday. We'll see if I make it to the elections or not. I'd like to, but maybe it's pointless. I think I'll call clinic tomorrow and ask them to see if my room could be ready by, oh, 10 am or something like that. That way, maybe by evening I'll have some antibiotics running. *le sigh*. I'm doing this by myself. I and Mom decided that she can come down later in the week if I need her - which I might. Right now, I'm pretty fucking sick. I'm going to bed at this ridiculously early hour so maybe I have a prayer of lasting through tomorrow. I also realized this evening how few people understand this. They don...
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