Friday, May 25, 2007

Still A Work In Progress

Believe in life! Always human beings will live and progress to greater, broader, and fuller life.

--W. E. B. Du Bois

I'm still on home IVs, and will be for awhile it seems. I was up to 2.4L when I was discharged from the hospital on May 14. Since then my FEV1 has been less than stellar. It goes up and down almost daily. My peak flows are fairly decent, but other than that, I'm not producing any wonderful results. Today my best FEV1 was 1.99L. I'm not sure what's going on.

I'm on SO MANY medications right now, that it's hard to keep track of it all. Here's just a PARTIAL listing. Ugh.

With all these meds running through my bloodstream, it's little wonder that I'm so tired. I'm also being exceptionally diligent with my new vest. I'm keeping an eye on my blood sugars, and I'm trying to eat like a horse.

Admittedly, all of this stuff is discouraging. I have trouble understanding why all of these thing that are supposedly "helping me" don't seem to make a difference.

I got some bummer news today too. My favorite person at the CF Clinic has retired. I'll miss her terribly. I had no idea she was going to leave. She just sort of disappeared. That explains why things have been in chaos over there lately. The remaining staff must be scrambling to keep it all together in her absence. This makes me even more reluctant to continue with the adult CF clinic. I haven't been that impressed with them as of late, so maybe this is just the situation I needed to get me to investigate other possibilities.

Nonetheless, there are happy things on the horizon. My e-book, Dear Future Husband, will be available soon. I'm just working on the last bits of editing before I can send it off to the publisher. Keep checking back for updates and for more information about pre-sales.

Boo. I wish you felt better. When I was going through crisis with my myasthenia gravis, my favorite neurologist left for New York City. I was devastated, but I found another one, a little different in approach, but just as wonderful. I hope that will be the case for you too.

What does FEV1 measure? I read that everywhere, but I don't know what it is.
Are you feeling better? I know it's the pits. CF is the only illness where you can do absolutely everything "right" and still the body rebels. It is downright discouraging.
Love and Light,
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