My Dermatomyositis/Polymyositis Story

In late 2004 I began experiencing flu-like symptoms and went to hospital because I was concerned it was getting worse and worse. The local hospital sent me to Vanderbilt immediately and they began testing. I kept getting worse physically and mentally and they couldn't diagnose it. My symptoms were so bad they decided to place me in a coma while they worked.

They found the answer and after four months they allowed me to come out of the coma. They diagnose me as one of the myosotis conditions but my body functions unlike most patients with this illness. I couldn't talk, hear or move at first but worked hard with my husband and the medical staff of several facilities to get me home in 2006. I have worked many months in physical and occupational therapy (on several occasions) to function better and even stand, but I am still in a wheelchair. Several years later, I was diagnosed with chronic hives and found that was inhibiting my therapy. In the hospital I was given massive doses of prednisone but didn't need to take it again until 2012.

Now I am taking 8 mgs of prednisone along with lose doses of pain medication and medication for my hives. I am in physical and occupational therapy and I cook dinner most days. I also make beautiful greeting cards for lots of people, I'm crocheting afghans and plan to learn quilting. We have a flower garden I started before I got sick and we made a vegetable garden a couple of years ago. But I'm losing my hair and have to spend more time resting than I really want to.

God is central to my life and I wouldn't have wanted to make it without Him, so I'm continually keeping my eyes on the Cross. I retired from the Army after serving 22 years, I've been married to a wonderful man for over 30 years, we have three sons and four grandchildren and our old faithful Italian Greyhound, Busta. I have caregivers who help me 4-6 hours a day and I don't know what I'd do without them. I'm happy most of the time but cry sometimes. I hope that being here will help others and help me. 😄

Thank you, Joy. I also suffered with sleep apnea until I got my CPAP. I call the air that comes out of the CPAP my drug because I just can't do without it. I finally got more than two hours sleep after 6 years of suffering. I see that you also have multiple illnesses. Do you have a doctor who is coordinating all your care, a palliative care physician? Well, anyway, it's good to meet you! Be well!

I would change too. They have to be able to talk in order to help you. That's why I believe the palliative care doctors are so important. Look forward to hearing more from you. Be well!