I’ve been rather quiet on this blog lately. I’m not quite sure why, although I think it’s got a lot do with being tired and a bit overwhelmed and therefore not having things to post that aren’t medical and health related.
My trip to England was lovely and the convention was fantastic. It returned me refreshed, renewed and enthusastic for all the things that I’d been not doing or thinking about while I was sick. I read some excellent, amazing books (I’m on a good book roll right now) and was feeling thoroughly ready to tackle the world again.
Then I got the news from my specialist that my colitis was not in remission and seemed to be prednisone dependent. As my symptoms (the bleeding most noticably) had returned when we tried to taper down the pred, I had to concurr. This meant that our plan to taper off the pred and introduce a nice, cheap, easy-on-the body maintenance drug was not going to work. Yup, pretty devestating news. I’m now waiting to hear whether my insurance company will fund an insanely expensive biological immuno-suppressant called Humira, which has the advantage of kicking in fairly quickly, or whether I’ll have to use the cheaper, non-biological drug azathioprine, which takes several months to reach theraputic levels. In the meantime, we’ve bumped the prednisone back to high levels and I’m dealing with the side-effects (acne, gastric reflux, yay) while also dealing with the anemia from my heamoglobin dropping due to bleeding.
Mostly, this has involved insane levels of exhaustion and me turning into a crazy person obssessed with everything I eat in case that’s the thing that’s killing me and OMG what am I doing to myself?
My specialist keeps reassuring me that this is nothing I’ve done to myself, this is not my fault, and I could be not eating anything at all and I’d still have active colitis. My disease is severe and extensive, but it’s not something that I can fix by diet or by not eating or by turning into a crazy obssessed lunatic.
He may not have come out and said the bit about being a crazy obssessed lunatic. He’s far too nice for that. But it was certainly something he would have said if he wasn’t so lovely.
On Friday, I had a slight existential crisis in the middle of the grocery store. I was exhausted, to the state of being a burnt out zombie, and the exhaustion had been doing funny things to my brain all day. I was depressed, feeling rather desparing and defeated, and it all seemed to fall on me in the middle of the grocery store.