Sunday afternoon; gorgeous outside.
Didn’t know if I wanted to write, but then thoughts came.
I think I have turned a corner. Since my last post, granted could change anytime, but I am clear to say at this moment in time I haven’t coughed at night; my coughing has become less, less yucky, less explosive, better. Actually, I lied. I briefly coughed two nights ago, but for a short time and I think my lung were just irritated. No kleenexes on the floor.
I am more cruddy the day after working 12-hours. I decided today, a few minutes ago, that I am going to keep up three treatments a day for a while. When I feel the great need to skip one, or I just can’t put on that blasted jacket I will allow myself that.
Which reminds me I haven’t done my second at it is after four. Lord. This will have to be kept short.
I have gone in phases of doing three treatments a day. Then the tides change. In the hospital you do three treatments a day with a PT person. They pound on you the old fashion way; the old fashion way probably works the best, but the dependency . . And pounding on someone for 20, 30 minutes with short breaks, it is a lot.
I knew this one kid when I was a kid, 14, and he did four treatments a day. Mentally four treatments a day – leaves me speechless. The shackles are tight. Too tight. I have this gut feel he isn’t around anymore.
I met him at CF camp – a life changing experience. Mary Jo McCracken, a NP, educated the eight of us to be a participant in your health. To know your medications; why you take them, how much, and do you have to take them anymore. Become active not passive. I learned facts, stories about CF that I was not aware of.
We also had a lot of fun. It was the last year of the camp because of cross contamination. When some CF patients went home they got sick, probably from one of us.
People ask me how, why I work in a hospital. Hospitals, language, structure, are second nature to me. I grew around them all my life. In some ways, the familiarity is nostalgic. Not saying I want to spend overnight in one. BUT, I won’t work in a CF Center Hospital. There are bugs that only CF patients can pass from each other, and one in particular is deadly – Burkholderia Cepacia or b. cepacia. I am going to mention it here and expand on it more later. It is a super bug, and there is no treatment for it. It took a friend of mine.
Today, though, I have turned a corner and I am going to remain upbeat, positive, and continue to work my ass off, including getting my second treatment done, Yikes!