Inflatable Me

"Claire. It's a family name."
"It's a fat girl's name"
"I'm not fat."
"Well not at present, but I can see you really pushing maximum density. See I'm not sure if you know this, but there are two kinds of fat people: there's fat people that were born to be fat, and there's fat people that were once thin but they became fat, so when you look at 'em you can sorta see that thin person inside."


Don't get me wrong. I'm not invoking The Breakfast Club trying to imply that I've ever been thin. I haven't. Two very loving grandparents and Little Debbie collaborated to be sure I was always kind of a plump kid. (Mmmm...oatmeal creme pies).

This quote has seemed so relevant to me over the past few weeks because what I didn't realize is that steroids are apparently what can push a person just past maximum density and make them explode. Seemingly overnight I went from looking like me, to looking like movie me in a fat suit! My face did anyway, and I guess that's more make-up than a fat suit, but you get the idea. Do you remember when Inspector Gadget would shout "Go, go gadget coat!" and (eventually) his little trench coat would *POOF* out into a balloon? That's what happened...to my neck and cheeks.

I'd been forewarned. Dr. Essell told me I might see "some" swelling in my face. Of course at that point the GvH was so bad he could have told me that the steroids were going to cause my hair to grow back plaid and I'd have totally taken them anyway. "Some" doesn't really cover it though. I started describing it to people as my face turning into a pumpkin shape. A quick internet search revealed that this condition is informally called "moon face" and rightfully so, my features now float in a tiny space of my inflated face just like the man in the moon.

It's odd because the rest of my body hasn't really changed, or if it has I'm actually a little slimmer (this assessment based on how often I'm required to wear a belt with pants). You'd think, or I did, that if steroids made you "bulk up" it would be all over, not in one small region. I should be careful what I say though...I hear there's also a phenomenon called "apple belly" and I have no desire to find out what that's about. Having a 400lb head on a 165lb body will have to be my style for now.

I've been really self-conscious about the whole thing too. I try to warn people before they see me in person and I've refrained from taking many pictures (more or less posting them on facebook!) But I've decided since this is part of the process of getting better, I'd share it. Plus I realized I can't avoid the whole world until I deflate. Eventually my face will return to normal, but my steroid dose is at 25mg, we're only going down by 5mg each week, my GvH already seems to be flaring up, and facial shrinking apparently doesn't even *begin* until I'm under 10mg...and it's a long process. So maybe by Christmas I'll not look like a bald, clean shaven Santa?

In the meantime, "Go, go double chin!"

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.