UpdatedStory

My updated story

It has now been 4 months since being diagnosed. Reading back on my
own story it is hard to believe everything I was going through.
Today I am up and about and feel great, not as I was before this disease
but very close. Maybe we just get so used to it all that it is normal now.
I could not go back to work and function fully but I can live the life I
have set for myself now.
I go out driving and shopping but still live with fear of falling due to the
knee's being rather weak. I still shuffleboard every week at our VFW
club. I still cannot get myself off the floor but working on it.
I am not happy with the Prednisone pot belly and moon face but have
no choice on that.
My Husband is having to build up my garden so all growing boxes and
pots are up high enough that I don't have to bend over to garden which
is my passion.
When I was working full time I always wished I had more time to spend
in the garden, now I guess I have all the time in the world.
This year I will have to wear a hat and sunscreen due to the sunshine
not being good for us as it could trigger the rash again.
My Prednisone has been cut from 60 to 40 mg and 100 mg Imuran
added. Today life is great. Who knows what tomorrow brings. One day
at a time.

My Husband and I were visiting some friends to play cards when I went to the bathroom, Oh my
God, I couldn't get myself off the loo, (toilet) my legs had no strength in them. I called for my
Husband who came and lifted me off. It then got to where I couldn't get up from the chair I was
sitting in. This was too much to bear. The next morning I went back and told the Chiropractor
what had happened so he kept working on different parts, he had to lift me from the chair but
didn't seem concerned, just told me it might take a while. I acutely felt sick. I was unable to lift
any thing and could not stretch my arms out. I had to call in the for the weekend as I knew things
were getting impossible. I took things easy that weekend hoping that maybe a little rest would be
the cure all. Always the optimist.

I woke up to the sun shinning through the window, What a lovely day, I felt great and it was my
day off work so I lay there thinking about going shopping for My Husband's Christmas present
and later put up the Christmas decorations and tree. With every thing I had been going through I
had not thought too much about it. Working in retail for over 13 years shopping had never been
one of my favorite things to do but this was always special to buy my Husband a gift.
That's when real fear and panic set in, I was ready for my morning cuppa tea so time to get up, get
ready and get busy. As I tried to get up I couldn't move, not even my head, my body was frozen.
I yelled for my Husband and asked him to get me up. He lifted me up and once I was standing I
was okay, This was the last straw, forget all my plans and the Chiropractor, I was going to a real
Doctor but who? Having no family Doctor as I never have used them I went to the Urgent Care
Center and saw Dr. Hindman. He had treated me for many broken bones as that seemed to be my
thing, not sickness. He immediately assessed me and took blood and a urine sample. My blood
showed a CPK at 5,000 instead of 200. Before I knew it he came in with an appointment for me to
see Dr. Doud, a Rheumatologist in Omaha two day's later. He explained what he thought it might
be but would not elaborate without confirmation. He did however let me know that it was not life
threatening and she would be able to help me and get me on my feet by New Years. That night I
had to sleep sitting up as if I lay down my body would freeze again. I was now unable to climb the
three stairs we have from our bedroom to the main part of the house, my legs were so weak. Little did I know this was just the beginning of a long journey.