I haven’t taken dexamethasone since December 31, 2017. I didn’t plan for it to be a year-end thing, it just worked out that way. And, although I’m proud to be 72 hours steroid free, I am not completely out of the woods.
I’ve been pretty much bed-ridden since Christmas, when I started the final step down before quitting. My muscles hurt in ways that force me to shuffle down the hallway taking the tiniest steps. I ask Dan to fill my water glass for me and turn switches on and off, because I just can’t.
My skin hurts. When I twist my torso to grab the toilet paper orI roll over in bed, my skin feels like it’s being twisted or pinched after first being carpet burned. But all of this is on the under side of my skin, not the surface. (Don’t worry if this doesn’t make sense to you; it doesn’t make sense to me either.)
My coat hanger pain is so intense, it frequently reduces me to tears. The referred pain from the nerve it pinches goes into my left arm, my neck, my jaw, my ear. And the muscles covering my skull on the left side of my head—the ones I used to use to wiggle my ears—are just tiny over-dramatic knots. When my head hits the pillow, they signal to my brain that someone’s digging around in an open wound.
Because I hate to leave things on a completely negative note: I bought the Bedknobs & Broomsticks Blu-Ray with an Amazon gift card the other day. It is supposed to arrive today, and once it gets here I am going to watch it on repeat until I fall asleep.