Lisa recently responded to one of our survey questions with her heartfelt health story. Below is what she had to say.
Picture this:
It’s six weeks before you’re getting married, you’re about to go on tour to promote your first full album, and you’re working full-time, planning a high-profile workshop.
Imagine you suddenly get a skin rash out of nowhere and make an appointment, thinking the dermatologist will give you some topical cream. Instead, he tells you that you have a rare unpronounceable disease and refers you to a rheumatologist. All at only 35 years old.
This was me in April 2008, when I inexplicably got a very red, itchy rash on my hands, nail beds and knuckles, and had cuticles that were painful to the touch—especially when doing simple things like washing dishes or pulling items from my backpack.
Fortunately, my diagnosis of dermatomyositis (DM) happened fairly quickly. Even with the barrage of blood tests, skin biopsy, drugs (like prednisone), CT scans, EMGs, and MRIs that were required to be conclusive.
I attribute a quick diagnosis to having telltale signs of DM at the onset—particularly, a red-purple skin rash on my hands and eventually all over my body—and having a dermatologist familiar with DM to catch it and make the referral. That isn’t the case for so many people who go years without a diagnosis!
However, the emotional side was rough as I was plunged into a world that was completely foreign, and as I mentioned, I was just about to get married. My partner and I had to consider what that might mean for us too.
What started as a rash on my hands, and then body, eventually extended to my muscles. They became weaker and weaker over time. I also began to experience fatigue, and stamina and energy issues—which remain to this day.
I’ve been dealing with the challenges of managing DM, and trying to find the right combination of treatments, drugs, and therapies, since April 2008. I was in denial for a while and tried continuing my life as usual. That is until my body forced me to slow down, and eventually stop in 2010, when I was hospitalized for nearly a month with complete muscle weakness due to a flare of my DM.
I was confined to a wheelchair and forced to undergo rehabilitation for many months to relearn the basics. First, it was how to sit up, then how to stand, how to walk, and eventually how to sing and play my instruments again.
Good luck! Last year I was told I have DM along w multiple autoimmune diseases. It’s a long list and the doctors appts and tests are endless. Hope you’re doing better.