I slept long and deep from about 6 am to 2 pm... I couldn't get
myself to sleep any sooner...
when i feel good, i get excited and do a lot--- not physical, but
thinking, designing, planning
and dreaming.
I awoke with pain pulsing in my arms. Achy from cold. Because
though i sleep with two hats
and three shirts, a sweater, and neckwarmer, 3 top sheets and four or
five blankets, seven pillows and the wall beside me stuffed with my
down comforter, a pillow, blankets and towels as a baffle, and though
the house itself is warm and kept at 72 to 74... my paralysis puts me
in a room I barely visited in winter, my bed against an outside wall.
Anyway this was to be about the conversation i had yesterday with my PT.
We had talked about a stim unit for my legs. It's possible to get
through Medicare if you have pain she said sadly.
Pain -- great. I have pain
You do? she said, You never talk about it.
I laughed and grimaced. She had cracked the facade and my mind raced
around with pride and melancholy. I had to go there. DRAT.
I was passing and had managed to put the pain someplace. But now I
had to face it. I was reminded why when certain things hurt
(psychologically) they hurt more than they used to. And by the same
token there are things i once had the luxury of being sensitive to,
that I am hardened to.
And as I write this I want to cry because of the strictures with
which i bind myself up to move forward through the pain.
So I talked to her about the pain, never zero until I sleep, how it
goes from 3 to 7 and I consider that
success because I remember laying in the hospital wracked and
wrenched by it. Weeks of 9 and 10
And more recently this summer when the $%$# neuro's office refused to
renew my script until i could see her again which left me 6 weeks
without anything and wondering if i could afford to go to the
emergency room and get shot up.
I told her that I was essentially self medicated--- i didn't what
what I was offered in the hospital after losing days at a time, that
I went for awhile without anything and how I was insulted and
derided about it in the nursing home, but i feared their incompetence
(which i had repeatedly witnessed) in administering complex meds, and
that all I used was LDN - low dose naltrexone and the rest was an
effort of will or mind until moments like this when my attention
turned toward what i was feeling: squeezing, pulsing, thrumming
humming punctuated by punching shock things.
So hope. Hope to get fixed. Getting help, moving forward. My legs
are spasming, moving flying off the wheelchair. Lovely. Annoying,
can't move anywhere.
This cold is awful. Not that i go anywhere, anyway, but I do like to
at least open my door roll out and breathe the still air while it
lasts.
Also yesterday, the plumber came and moved the pipes in the
bathroom that was once my dining room so they won't freeze again. And
the pipes are knittin needle slim white pvc? lines, so i can still
roll under my freestanding sink. Wonderful as his work is, it means
I'll have to give up TV for a bit
as the only way we get a signal is cable and this unanticipated
expense in the winter is hard to absorb.
Now if it would just stop snowing and warm up to a reasonable
30degrees F, it would be
more easy to prevail.
--
http://www.akuadesigns.etsy.com
"When I despair, I remember that all through history the way of truth
and love has always won. There have been tyrants and murderers and
for a time they seem invincible but in the end, they always fall -
think of it, always."
Mohandas Gandhi
