My Story  

I was diagnosed over 35 years ago, about 1971 with the rare muscle disease, Juvenile Dermatomyositis. It was  one month after I turned 17. Wow, what a journey it has been!  The disease came on very quickly and I was very sick at first. I spent the end of my junior year of high school and the following summer in bed.  I was always tired and very weak and at times was sleeping 12-16 hours a day.  I had a hard time swallowing, getting out of a chair, lifting my arms above my head and holding my head up when rising out of bed.  It took time, rest, physical therapy and strong medications before I began feeling a bit better and stronger, for me it was about 2 years.  During that period I was usually "wired" on high doses of prednisone, which in those days was the ONLY treatment for Myositis.  I gained 30-40 pounds in 3 months from the Prednisone but lost most of it after my dosage was lowered.  It was a long summer where I endured daily, usually painful physical therapy treatments.  Dermatomyositis (DM), unlike Polymyositis (PM) and Inclusion Body Myositis (IBM) also has an itchy, red skin rash.  As a teen I was very self conscious about how I looked and I found many types of make-up to hide the redness, while trying to ignore the stares I got when I went out in public.  It took a lot of  adjustment and a lot of support to get my life back to some sense of feeling normal. 

Over the next 10 years I was getting a lot better but I still had to take medication and deal with the side effects from those medications.  I saw the doctors quite often and there were still some things I could never again do, but I was able to get on with my life.  After graduating from college I was able to work but not usually full time, as I was still weak and tired easily.   

After 35 years of slow muscle degeneration I have lost most of my muscle mass and strength.  Some of that I'm sure is due to long term use of prednisone and some from lack of use.  It is difficult to get around and I gave up driving many years ago.  My active physical life is very limited and it has always been very hard for me to exercise because of the painful calcium deposits that riddle my muscles. (A symptom of Juvenile Myositis)

I work at home doing computer bookkeeping, taxes and website design. I try to enjoy life, my family and friends, porch gardening, my computer and movies.  I am The Myositis Association's, KIT ("Keep in Touch" ) Member Support Group Representative for Washington State.  I am still on several medications, Methotrexate, a low dose of prednisone which I am trying to lower and IV Remicade treatments. I have been concentrating on Naturopathic medicine, homeopathy and natural supplements.

I have my ups and downs and despite my disability and lack of mobility I try to lead a rich and happy life. I do my best to surrounded myself with friends and family. My life however has changed again, as life does, and I am finding I am in a new life stage.  I have been experiencing a greater degree of weakness and have had to graduate from walking with my walker to using my wheelchair exclusively. This has been happening slowly over the past 2-3 years and has been very difficult. It has been a daily struggle and had a profound affect on my 18 year relationship with my husband.  In June, 2006 I moved back to my hometown, Spokane, WA and am living with my family. I am now facing the realization that I will be starting my life over again without my husband in my daily life.  After a full year of living without a partner, I am now trying to move on and plan to move back to the Seattle area where I used to live. I look forward to my new adventure and seeing my old friends and family there. I remain close to my ex-husband and he will continue to be a friend and support to me.  I am looking forward to the Annual Myositis Conference which will be held Sept 6-9th in the Seattle-Bellevue area of Washington State. I hope to see you there.  I try to remain positive but at times still get very depressed, which can be very true for many of us, but I realize my weakness is mostly happening because I have had this disease so long and have not been able to be very active.  But life goes on and we must all endure, accept the changes and strive to be happy and find our self worth.  Good luck and try to stay positive. This attitude has been very helpful in dealing with my disease, my life and my overall health.