CF Awareness Video

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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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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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CF Contact

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Me and Trinity: What a cutie! Chest PT on a baby: The Cystic Fibrosis Foundation discourages any contact among CF patients. Personally, I think this is overreacting at its best. Yes, some precautions need to be taken, but it has been blown totally out of proportion. I am writing this because the other night at Concert on the Square I held Trinity. Her mom handed her over to me, and we were talking and then she told me that Trinity has CF. I asked if I should take precautions and her mom said that it was okay for me to interact with her - and I feel that as long as the parent says it's okay, it's okay with me. And I did her chest pt - and it was a nice break for the parents. They have three children under three and two of them have CF. They have a 3-year-old with CF, an 18-month-old without, and Trinity, 2-months-old, with CF. If any family needs a break it's this one. I have always wanted to work with CF kids - and I know how much the CF Foundation would have nothin...
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