Diane,
Thank you so much for the recap. OhMyGosh! How truly frustrating!!! Yes, I can feel your frustration with the junk I'm dealing with too. I just hate the "not knowing" part of this disease. I mean, we can go on IV meds for YEARS like clockwork, get the results like clockwork, know our bodies like clockwork, and all of a sudden, something "new" is thrown into the loop and we have to step back and wonder what is going on... No matter how much we try to make it like it was or get the results we got, we don't get them, and for me, that is one of the worst parts of this disease process. At least if we knew meds would always work, would always cause XYZ to happen in XYZ order, it would be a little easier to swallow. But, when things get shaken up and we dont' get results or get "odd" results (like your up and down fev1, low-grade fevers, etc.), it seems to shake us (at least me) to my control-loving core. I then am skeptical that ANYTHING at ANYTIME will work in the same way and the whole not knowing cycle continues.
I pray for peace for you. I pray they are able to figure out what is going on. I pray for you to breathe easier and have an easier time recoperating.
Please know you're in my thoughts....