During some of the days before and after my surgery, Daddy and I often talked about how we couldn’t wait to ‘get back to normal’. When Daddy left for his trip we talked of how close we’d be ‘back to normal’ when he returned. One of Daddy’s tasks he assigned while he was gone was to list everything I was looking forward to about ‘getting back to normal’.
Today I learned we won’t be ‘going back to normal’. Not any time soon. Maybe not ever. Early this morning the doctor called with the news I really hoped I wouldn’t be getting.
Daddy was at work when the call came and he’s having another busy day and even though we’ve managed to talk and text, I really can’t wait until he’s home. So far, I’ve managed to stay busy. I had doctors to call, appointments to make, and new doctors to research. But now that’s all done and there’s still nearly three hours to go before Daddy gets home.
And I’m scared and frustrated and angry. Very angry. I mean I know it’s not cancer, but it’s fatal if I don’t treat it. And treatment involves taking high doses of oral steroids and immunosuppressants that have side effects that will most likely make me feel way sicker than I feel now. And since it’s so freakin’ rare, the doctor who diagnosed it doesn’t even know where to start to treat it so I’m off to find yet another specialist (and hope to God they take our insurance).
And this is all I really have to say today (well I have more but it would involve using words I’m not supposed to use and despite the fact I'm thinking them all right now, I do still love and respect Daddy so I think I’ll stop right here).