Andrea's column: May I have your attention?

Talk about it

What a lucky woman I am. Every week, I get to tell readers what’s rattling around in my head. This week, it’s my inheritance — specifically, the autoimmune disease passed on by my father. Inclusion Body Myositis. IBM.

Myositis means inflammation of the muscles. Having an autoimmune disease means your body mistakenly recognizes something as foreign and attacks it. With IBM, it’s muscle.

There are four types of myositis. One affects juveniles. Another, Dermatomyositis, creates an itchy, often painful, rash that attacks capillaries under the skin and also weakens muscles. Polymiositis attacks the trunk and those muscles closest to it. IBM affects the quadriceps and distal muscles, as well, and has no cure. My doctors try different medications and therapies but, so far, nothing has stopped the progression.

I was diagnosed 13 years ago. At the time, I was training for my fifth marathon. Two months before the race, a neurologist finally confirmed what I already knew — what other doctors pooh-poohed for years — that I had the same disease as Dad.

Stepping up on a curb had become impossible. Climbing a flight of stairs had my quadriceps quivering. Morning runs took longer and longer. The year before, I had spent nearly seven hours running and walking the 26.2 mile course of the Twin Cities marathon. When the doctor told me to hang up my running shoes, I was sad. Relieved, too.

When I learned about The Myositis Association, an international organization which funds research and educates myositis patients and the health community about the disease, I joined. Anonymously. I didn’t want to go public with something so personal. But last year I learned about Myositis Awareness Day and, throwing caution to the wind, informed Town Pages readers about the occasion and, also, about my myositis.

My column caught the attention of TMA executive director, Bob Goldberg. He sent an email thanking me for bringing attention to myositis. I asked about writing a column for their quarterly publication and was given the go-ahead. I write about things members might relate to — falling, for instance, or using a cane — but try to do it with humor.

TMA has “Keep in Touch” support groups around the country including one in Minnesota. It’s not the kind where people sit in a circle and lament the tribulations of living with a chronic illness, though.

Our group meets four times a year. Three meetings involve a presentation: A doctor from the Mayo Clinic, perhaps, or a tour of Courage Center. The fourth is a social get-together with a meal. Earlier this year, the man who had facilitated our group for many years stepped down. I offered to take the reins.

Because it’s difficult for me to get around, I have never attended a meeting. My husband goes instead. He brings beverages and nametags, greets attendees, and introduces the presenter. Members bring treats. Behind the scenes, I arrange speakers and meeting places and notify members about upcoming events.

Until this year, other than my father, who passed away before I was diagnosed, I didn’t know anyone with this disease.

I thought of that last week when I talked with a man who also has IBM. He laughed about his hands and said something about how useless they are. I know what he means: Hands without muscle — fingers and thumbs splayed out straight and stiff like 10 number two pencils. You have to laugh because crying is not an option.

Myositis Awareness Day is Sept. 21. For information, go to The Myositis Association website, www.myositis.org

Tags: opinion, rosemount, commentaries