This year the Myositis Foundation is asking everyone whose life has been affected by Myositis to send an email to Oprah Winfrey and Ellen Degeneres, and encourage both ladies to devote a show to this relatively unknown and devastating disease.
I did send an email to the Mizzes Winfrey and Degeneres, and I also want to share my experiences with you, my faithful readers.
Six years ago, I received word that at age 27, my dear friend KT had become very very ill. It commenced with a frightening episode that landed her in the hospital, unable to move most of her muscles, left her exhausted and in severe pain, and stumped nearly all the doctors she saw. Finally, after many tests, including a muscle biopsy that sounded incredibly painful, KT was told she had Myositis. Don’t know what Myositis is? Neither did I! Myositis in its various forms is considered an inflammatory myopathy—a disease of the muscle where there is swelling and loss of muscle. The inflammation and muscle loss result in weakness and muscle pain. Many Myositis patients alternate between insomnia caused by the severe muscle pain and restless leg problems, and bouts of over-sleeping borne of exhaustion. In a survey conducted by the
Myositis Association, 44% of respondents said that they experienced constant muscle pain, and 43% said they lived with intermittent muscle pain. 76% said they had never experienced remission.
But let me back up a second. Let me tell you about Ms. KT. I first met her when working for a Highly Respected Children’s Magazine which launched a toy catalog for Christmas. KT had worked in the customer service call center for the Magazine, and was put largely in charge of the new call center for the Catalog. She was so friendly, warm and nice from the very moment I met her, I knew I liked her. Turns out she was a heck of a supervisor too! We had a few people in that call center who were T-E-R-R-I-B-L-E. Really, truly terrible. While I longed to hit them in the head with a folding shovel, KT patiently an enthusiastically coached them…including the girl who repeatedly fell asleep, head thrown back to snore, and even the girl who told customers, “It will be a minute while I process your credit card. I mean, we have to make sure you didn’t steal it or max it out or anything. So hang on while I make sure you have enough money for this.” Again, she was patient and didn’t even attempt to throttle her with a telephone cord or anything.
Over time we grew to be friends outside of work, and I met her two Gigantic Cats, who are beautiful, and her itty bitty niece who was even lovlier. KT put up with my Ethel Merman obsession, introduced me to Krusteaz muffin mix and shared her love of Live.
We moved to Wisconsin, and KT moved up in the Highly Respected Magazine, eventually moving to another call-center based company as a supervisor. Then, she got sick.
Myositis is a disease of limits—how long you can stay awake, how long you can stay asleep, how far you can walk, how much pain you can take. I know that KT lives with constant muscle pain, at times more severe than I can fully imagine. She has seen her life go from independent career woman to living with her parents. She puts up with stares from random shoppers when she has to use a cane or wheelchair (and the “you don’t look sick” look when she legally parks in the handicapped zone). She has long periods of slow improvement which can end with a relapse, and a slide down the mountain to start over again. The frustration and disappointment must be overwhelming at times, but one of the best things about KT is that she is never bitter. She doesn’t mope around in Why Me mode, doesn’t devote her energy to longing for her old life back and thinking about what she has lost, but rather puts her energy toward getting a little better every day. If I were in her shoes, I’ve no doubt I would be a photographic negative of KT. I would be every bit as bitter, negative, angry and inconsolable as she is upbeat, positive and accepting.
I admire her more than I have probably ever told her, and look to her as an example when my diabetes care starts to feel like more than I can handle. Despite everything, KT is a terrific aunt to her gorgeous nieces, went on a Disney cruise, which I’m not nearly brave enough to try, is as supportive a sister as you can be, and still manages runs a
website to raise money for Myositis awareness and education. I can't even keep this blog updated. KT, you're making me look bad ! :)
Most people, and some doctors, have never heard of Myositis. It is difficult to diagnose, and it is not uncommon for people to go years with incorrect diagnoses (including the famous it-is-all-in-your-head) before anyone figures out why they can't get out of a chair or climb a flight of stairs. There is no cure for Myositis, and for some people, very few treatment options. The more people hear about Myositis, the more money can be collected for research, and the sooner a cure can be found.
Won’t you take a few minutes to learn more about Myositis by visiting the
Myositis Association? You can watch a great feature about the disease on
Retirement Living TV.
And last but not least—it all comes back to Fabio. A family friend of Fabio has Inclusion Body Myositis, and
Fabio discusses its devastating effects. As he points out, most drug companies are not eager to pump money into Myositis research, as the market for such drugs, 30,000-50,000 people, is relatively small compared to cholesterol drugs, which bring in over $20 billion annually. I know I make fun of the Fabio-meister, but I also like to give credit where credit is due. He is doing some good work here, helping to raise both awareness and money for this deserving cause. I can only hope that my 17,000 calls to Fabio Phone will keep him Not Believing It Is Butter for years to come.
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