2006-08-16 00:32
I was feeling sorry for myself today. So rather than sit around
sulking I did a bit of internet research and found this
Steroid Message Board
It focused on the very thing I am feeling sorry for myself about!
Hey, I am not alone! I did more than read the entries; I submitted
one and here it is:On October 30th of last year I went to the emergency room with a
weird headache. It was the third day I had it.
To make a long story short, I ended up in ICU for a week, nearly died
the first night (woke up to the crash cart with 5 people staring at
me in the wee hours), and a diagnosis of CNS vasculitis. And guess
what saved my life? Huge doses of prednisone! My cool nurse was
shocked at the quantity they were dripping into my veins. It worked-
the inflamed cerebral arteries shrunk back into shape.
I left the hospital with 7 prescriptions. One of them was 80 mg of
prednisone once a day.
Zillions of Dr. appointments and gallons of blood work later, 8 weeks
ago I got to quit the prednisone after months of weaning off the
stuff. I was so happy to finally leave it behind!
More than anything I wanted to lose the weight the prednisone caused.
I have a closet full of size 3 and 5 jeans I can't wear. I wanted to
be able to sleep without needing Lunesta. Blah Blah Blah! So many
complaints I could make on that angle.
What I did not expect happening when I finally got off the pred is
why I am writing now. In the 8 weeks off that stuff I have become
disabled.
My knees hurt so bad I have to crawl up a chair to stand. I wish I
had a trapeze over where ever I'm sitting to pull myself up to
standing. I hang on to the towel racks to sit down on the toilet
because of the pain.
I've been weepy and depressed- more than ever! I walk my dog twice a
day, and however long I walk him I end up sleeping about 4 times that
time when we get home. I've never been so exhausted so quickly.
My DR. told me being off prednisone for the time I'd been off when I
saw him last was nothing. I have a long way to go. He told me to keep
a journal of whatever my moods were doing, what I ate, my blood
pressure, pulse, and physical exercise I got per day, etc. I have an
appointment with him in 10 days or so.
After being on pred for 8 months I find my body has changed. My
metabolism seems sluggish, I still bruise easily, and now things HURT
a lot in places where it NEVER hurt before. UGH!
I've done much research about this troublesome trip. I am hoping to
find some practical suggestions and realistic expectations for
recovery from my "Cure". When will this end? What can I do to speed
it up?
Prednisone saved my life. However, the quality of life it left me
with (at this point) is not one I care to live.
Thanks for listening ya'll.
Regards,