Tuesday, October 15, 2013
I got to go home yesterday! Holy smoly, it feels pretty good to be out of CF jail. But why do I always forget that when I get home, the 3 of us living in this house are exhausted!
I have fallen asleep accidentally twice now and was asked by Aunt Gwynn (who came to help yesterday and today...a true God sent!) to go take another one. Jeremy went to bed earlier than I did lastnight and now Laila put herself down for a nap. We all just need to relax, rest and get on with our normal life. My legs need to get used again, my belly needs to get good meals, and my body itself just needs to breathe. Its one of those few weeks that you schedule everything pretty tight so you can schedule in time to sit and do nothing.
I left with my lung function at about 23% and sadly that makes me pretty happy, even though I wish my baseline was higher....at least I have hit it again and hope to just remain here while continuing my ivs. I have learned a little that it is ok to ask for more help and to take away some things that I know I can't handle. I have to remember that I am in fact still that healthy girl stuck in a sick girls body. I also learned that I need to be getting more fluids, because in deed it does the body pretty good...that and some oxygen.
My life (in regards to how my body handles health) keeps changing every week. I realize I push myself too much in order to keep up with my the healthy person inside. I am not really sure how to calm her down and make her see that the unhealthy person I am needs her to see that sitting doesn't mean you are lazy. A handicap sticker is ok, oxygen in public is ok, a wheelchair doesn't mean you are weak. But that is all so much easier said than done. I want to be independent. I don't want the burn in my lungs, the blur in my eyes, the shakes from medicine. I want to be healthy. I want to clean, do laundry, cook, do dishes, give my child a bath, bathe myself, be an awesome stay at home wife and mother. Instead I skirt by and quote my Scarlett O'Hara and tell myself that "tomorrow is another day." I want to organize things, but know I don't have the strength to do the work, but don't have the mind power to sit and watch somebody else do it. So I look at my house and say it is what it is. One day (I hope in the nearer future...) I will have the lungs and the health to do all this.
For now I am just going to be grateful for the rest that my doctors demanded I get and for the fact that I felt well enough to at least leave D6/5 and head home to be with my family, my bed, my food, my couch, my everything. Maybe and hopefully the next time I come home from that joint, I will have a big incision to heal and some new lungs to exercise. Wow, the thought of taking a deep breathe is like thinking of opening a present on Christmas morning...you just get the exciting feeling!! Until then I am breathing my shallow breathes and watching my phone!!