13 Hours of Sleep

There's really nothing exciting about yesterday...except that I slept for 13 hours of it. Technically, those beautiful hours stretched into this morning, but who cares about details when you've just woken up.

One of the (many,many) side effects of the steroid I'm taking is that it inhibits sleeping. On a good night I sleep 5-6 hours, on a bad one, 2 hours. Then I simply lay there, knowing I need more rest, unable to fall back asleep. Very, very frustrated. As a result I refuse to take naps, because who knows, I might not fall asleep that night at all.

In a funny twist though, the trick to me capturing such a long nights sleep (even if it was off and on) is that I have a bit of an infection. I've started on meds for it, but those will take a few days to kick in. To top it off I had a splitting headache since Thursday that taking even a tramadol (pain pill) didn't phase. By the time I threw up I decided that was it. This called for a nap. And the nap turned into the most prized hours of sleep I've gotten since my transplant. Phew. My body needed that.

Aside from this little infection, things have been going really well. The GvH isn't bothering my eyes or mouth and my skin has cleared up from all the blotchiness. Something (even the doc isn't entirely sure) is causing me to have neuropathy (tingling in my fingertips) but that doesn't bother me much, just feels unusual.The steroids make my hands shake (to quote my most tactful friend "You look like you have Parkinson's!). They've also caused "some" facial swelling, which the doctor had warned me about. "Some" turns out to be a condition unofficially called moon face, and it's making my head look like a giant pumpkin. Even my cheeks are taut from the swelling.

We are decreasing the steroid dose, but slowly so the GvH doesn't flare. This week I'm down to 30mg a day (which is a huge drop from the 160 I started at) and we'll go down to 20mg next Friday. After that we'll reduce by 5mg each week. The goal is to get me off them completely, but if the GvH acts up then we'll have to keep them on the roster for awhile.

I'll continue to be on tight restrictions until at least the end of July, possibly longer. In the meantime I've been doing a lot of organizing. The kind that you tell yourself, "one day, when I have some time, I'm going to..." File cabinets beware, I have a paper shredder and I'm not afraid to use it! I've also had a few visitors come by, which has been wonderful. And Brynn and I even threw a "Very Merry Un-Birthday" party for her one day (I'll blog about that soon). So while medical house arrest isn't the most fun I've ever had, I'm making the best of it and feeling productive.