Tuesday, December 21, 2010

Dear Doctor,

Re: my diagnosis
I am writing to let you know I have finally been diagnosed and I was hoping you could give me back a few years.
I have had symptoms for over 10 years and I have finally been diagnosed with polymyositis. This is an inflammatory myopathy that causes muscle weakness and muscle pain in the muscles closest to the body. It is an auto immune condition.
I was diagnosed from a muscle biopsy. I have been to so many specialists and I hope that maybe you would remember me so that if someone else comes into your office saying they have muscle pain in their arms and legs, and a feeling that their muscles won't relax and difficulty with fine motor skills and an elevated CPK, that you take the time to listen and try and work with that patient to find out what it is. For 8 years no one offered me a muscle biopsy.

Merry Christmas,
yours sincerely,
G. N.

P.S. I am not my disease (but knowing what it is has helped me greatly)

TO: the endocrinologist, the pain specialist (who said it was fibromyalgia), the psychologist (that said I had cognitive defects and referred me to the immunologist), the neurologist (who gave up after finding out it was not MS) and the rheumatologist (who diagnosed and treated me for 2 years as having Sjogren's syndrome).
PHOTO BY bwavobunny

Saturday, December 4, 2010

Well you got me on a bad day

"Pain is a more terrible lord of mankind than even death itself." Dr. Albert Schweitzer, the French medical missionary, 1931
Pain is called The Universal Disorder as we all get it at sometime or other I suppose - even babies. It is just part of being human and I suppose I would not like being one of those rare people that feel no pain as that could cause all kinds of complications. Living in constant pain, as I and many do, is not fun though.
The pain I feel (I refuse to call it "My Pain") is caused by muscle inflammation due to autoimmune dysfunction. I know what causes it but that does not really help - stopping the pain helps and that means using drugs prescribed by the specialist. Acupuncture and homeopathy have not helped with the pain as much as I had hoped. Today I have a lot of break through pain and need to take extra tramal. I do not know why this is, why I have extra pain, as there never seems to be any rhyme or reason.
They have started me on a new drug to dampen down the immune system and hopefully prevent future muscle wasting. Did you know that exercise will not bring back the wasted muscles but it will help prevent further wasting. This I found a bit depressing!
I am going to go and take another pain killer as I cannot sit here any longer - tomorrow will be a better day.