Wednesday, March 3, 2010


The whole the reason I am this skinny girl can give credit to my genetics. If you saw my beautiful mother and many of you do, you will notice her leaness. My father, also slim, my Nana had gams, baby. So I can be considered blessed that in my inherent make up we are slim, long and do not have the pearshaped, donut butt. We have no butt or breasts for that matter, however it makes it easier to sit on an airplane. But another reason that I am skinny today- 108 pounds as of now - I have cystic fibrosis. CF is a genetic disease that must be passed on through carrier genes from both the father and the mother. My brother, same parents, does not have the disease, nor do his children. They could all be carriers, but we don't know. CF makes the mucus in my lungs sticky and gluey. I have to spend time getting the bad stuff out of my lungs.
My time with CF involves a lot of breathing treatments. Sometimes I wish I was an astronaut that has a back pack breathing apparatus that I can walk around and do stuff but breathe my medicine. But usually I am just on the couch. Here is a break down of my time in the AM:
6:00-6:09 Brovana in nebulizer
6:10-6:23 DNase in neb
6:25-7:00 Mucomist in neb- smells like rotten eggs and is a lovely fragrance to wake up too :)
Then in the PM - I do the Brovana again- and now we are thinking of adding another. Weigh the time issue- dead in your bed or clean lungs and 2 hours a day of treatments. That thought is getting easier for me all the time.

This disease takes time. A lot of time. I don't give it enough time, sometimes I give it too much time. I am seeking that balance of time. But we all are fighting time in our own lives. My schedule is crazy, but I still have time to have wine with a friend or two. Whenever I am thinking- "Oh I don't have time to get it all done" I stop and think of growing up and hearing....."Tomorrow is another day, Scarlett". My mother would say this quote from Gone With the Wind. I may not have finished my room, a project, my Barbie town.....but she would let me know that yes, it would all be here tomorrow and I could work on it then. Two things- she gave me a tomorrow and she let me finish. I love my mom for that.

40 years later, Scarlett is still around. Today and yes, tomorrow. I work. I play. I read. I cook. I watch. I listen. I talk. ~and whatever it is, does not get done- I will be here tomorrow to finish.

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