I was diagnosed in  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.  I went part-time to school during my senior year andwas bale to graduate with my class. 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 in 1980 I was able to work but not usually full time, as I was still weak and tired easily. I married in 1990 and lived in Renton and Kent, WA for 16 years with my husband Tom. During that time I discovered The Myositis Association (TMA) and helped revive the support group for Washington State.  I am still involved with TMA and our "KIT" (Keep In Touch) member support group.  My relationship with Tom ended amicably 3 years ago. We are still  good friends and I am working on rediscovering myself and I look forward to whatever life may offer me and hope to except it with grace and dignity.                                                                                                                       

I work at home doing computer bookkeeping, taxes and website design. I enjoy life, my family and friends, porch gardening, my computer, music, food and movies. I have recently been studying and working on my family geneology.  I am The Myositis Association's, KIT ("Keep in Touch" ) Member Support Group Representative for Washington State, which keeps me busy and has been a unbelievable help and great support to me.

After almost 40 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. This is a symptom of Juvenile Myositis. I still take 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 and eat a healthful diet, which for me is very healing.

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 surround myself with friends and family. My life is always changing, as life does.  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 4 years and has been very difficult. I have also faced the realization that I will be starting my life over again without my husband in my daily life. 

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.  So....  life goes on and we must all endure, accept the changes in our lives and strive to be happy and find our self worth.  Good luck, trust yourself and others and try to stay positive, for me it has been very helpful in dealing with my disease, my life and my overall health.