I had a gut~wrenching appointment with Dr. Thompson yesterday. I knew it would be a tough one for me, because my breathing has worsened each day since I was released from the hospital. I was dreading the spirometry tests. The techs in his office are so good to me now though. They've finally accepted the fact that I AM trying my best and I probably WON'T provide them with the results they need. (especially on days like this) So, I got through the tests and moved on to the exam room.
Dr. Thompson entered with his head down. He seemed defeated. He started by telling me he wished he had news for me like he'd just given his last patient. (Little does he know, I heard that convo through the wall. They discussed her new cancer diagnosis and a very positive prognosis.) I felt like time stopped. I was sitting in the chair, struggling for each breath, just processing the fact that my doctor just told me he would rather be having a cancer talk with me...
My lung function was 22%. My eosinophils had spiked to over 1900 again. He said he was at a complete loss. He decided to restart the Churg Strauss treatments again regardless of my hemoglobin level. He said it was too dangerous to risk giving the disease more time to advance to my organs. He also agreed that I can't live in the hospital. He increased my steroids to an obscene amount and added some other meds to try and get me through on my own at home. He didn't even look me in the eyes when I left. He just turned to the door and said, "I'm sorry, Toni. We're doing our best."
I've been pretty numb for a while now. Last week was more of a breakdown due to the pain. Last night though, I broke. To see him feel so defeated was overwhelming. It was like a punch in the stomach. I want to feel good. I want to feel good for real, without pretending. I guess about five months of emotions came flooding forward all at once. I'm exhausted. I don't know how else to fight. I do everything I am supposed to do and it doesn't seem to matter. I guess I just need to take one day at a time and let go. Whatever will be, will be, and I'll be fine.
