today

New floor!!! look isn't it beautiful!?! thanks daddy!!!
Today i spent most of my day putting my room together. After a long weekend of being my brother's roomie. I'm finally in my own bed in my own room. New floor new closet. My room looks so pretty. Still no call from the doctor I'm hoping tomorrow. But if not maybe no news is good news. I'm more anxious then anything I'm not good at waiting. I would rather no now and get it done with. Today I'm thinking about a sweet girl named Megan...she is such an amazing role model for everyone out there please keep her in your prayers she needs some extra help. I'm thinking of her and checking her caringbridge almost hourly. please stop on over there and give her some encouraging words. My thoughts are on how strong people are and how they truly amaze others, seeing so many beautiful faces dealing with so much literally brings me to tears. How can this disease that is so ugly be in the faces of such beautiful children or in such wonderful and beautiful families. If you know the answer to that please enlighten me. Good night all sweet dreams

new

New room is almost done. Daddy and Aaron spent some hard labor putting in hard wood floors. Were hoping that taking the carpet out and giving everything will maybe help with my breathing issues. it's a beautiful room. Aaron is letting me sleep in his room. I'm hoping to have my room 100% back together tomorrow. I'll post some pics so you see how talented the Benson boys are. Tomorrow i hope to hear fro my doctor about our plans for the week...it is possible ill be admitted for up to 5 days. We are thinking maybe its time to try a new and super strong drug. So id like to just start feeling better. Also YAY for Megan who got her new lungs. I'm so happy for her and i know she is going to kick ass and take names with those new lungs. please keep all my CF family in your thoughts.

i lost

i lost a long time ago the ability to eat enough calories to keep my body healthy. I know its quite normal having cystic fibrosis but just saying that doesn't make it easier to live with. Knowing that a machine is doing such a simple job that i have lost the ability to do for myself is in some way demeaning. Knowing that with out that stupid machine clicking and clicking i probably wouldn't be where I'am at today. Losing that ability i also gained something; knowing when i need to put the pride and the anger for something i cant possibly change aside and do what's best for me. Thats all for tonight, i have to go hook up to the stupid machine and test my sugar, lets think low numbers. goodnight