I think I'm down to the point where I only owe two people e-mails and one person a phone call.
We don't use words very often in my family. My father doesn't comfort me, or hug me or says he loves me. Instead he'll do my laundry. Knock on my door in the morning. Open my bedside drawer and drop the Voltaren gel on the bed. Walk ahead of me so I don't fall down the stairs (why have I been almost falling and falling down the stairs so often?)
When I can't get out of bed my mother will come to my room and sit at my desk and work. She is more forthcoming with words, but even so, I prefer her silences. Her quiet comfort and that invisible but fully tangible bond between mother and daughter.
I could tell she'd been thinking it and I told her firmly that I did not blame her for giving me EDS.
I was in the mirror yesterday morning, crying quietly as I combed and flat ironed my hair, because it hurt my shoulder blades so.
Does this count, I wondered, as coping well? As not letting myself be controlled by the pain? If I don't stop what I'm doing, if I don't even slow down, if all I do is let these tears roll down my face, then you can't say I'm being 'controlled' by the pain, can you?
Yesterday when I met with D. I found out there was a place to get ring splints in Cleveland. And I could call and see if they would honor the script Dr. Francomano wrote. And there was a possibility insurance might cover the therapy, if the therapist could show it was necessary, which it is.
I felt a little hope and with it a little apprehension. Giving up is easy. Hoping is hard. Could my new PCP be willing to read a little about my illness? Would she fill out the handicapped placard forms? Would she make the proper referrals? Would she care about me?
Would someone finally write a script for a pair of gotdamned forearm crutches so I don't have to drag myself around my own house?
I used to be so, so strong. I could lift bench 90 lbs and squat 220. Now my body is turning into boiled chicken. I had to brush my teeth folded over the vanity because my hips wouldn't hold the weight of even my upper body. It was incomprehensible to the scientific me how any doctor did not think this was a problem.
My old doctor won't release her records to me, only to another doctor which makes me paranoid that there's something negative written about me. As such, I'll simply leave her notes out and settle for my specialists' notes, which contain summaries of all the important stuff anyway.
The good news is that I was informed that one of my poems 'I Picture Kim Novak' will be published this spring. All let you know all the information in a bit. That made me really happy.