Yet another thing stolen from me by dermatomyositis...my bicycle

A message for my friends with chronic illnesses

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The three parts of me: body, mind, and soul enjoy a little wake-up call

(How a celebrity body-shaming piece led me to write this article).

In "The Marvelous Transformation: Living Well With Autoimmune Disease," I write about taking back control of our body image even when chronic illness continues to damage it. I ran across one of these body shaming articles this morning, directed at celebrities and the "worst examples" of aging and I got angry.

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MEDICATION WEIGHT THERE IS MORE TO IT THAN YOU SEE

If you had seen me 10 months ago you might have mistaken me for a skinny girl. At 5’3 (on a good day) and 130 pounds, I had narrow hips, hollow cheeks, a defined chin and neck, thin arms, and my legs didn’t rub together when I walked. My stomach didn’t protrude and my clothes glided over my body. I could fold myself into a chair the way you are “supposed” to and I had a long neck and cute little crinkles in the corners of my eyes and mouth when I smiled. But...you would have been mistaken.
 

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MYOSITIS-INDUCED DEPRESSION SOME COPING STRATEGIES TO BRING SOME LIGHT BACK TO YOUR DAY

Written with Jerry Williams

Living with Myositis is hard. Let’s just put out the truth and give light to the darkness:

  • Maybe you don’t feel well, although you can’t put your finger on why so you feel frustrated.
  • You can’t do the same things you could do ten years ago, one year ago, maybe even yesterday and it makes you angry.
  • You can’t lift your children, the groceries, or even a backpack/purse and you feel helpless.
  • You miss out on family activities due to fatigue and you feel alone.
  • Someone says “You don’t look sick to me,” and you feel doubted.
  • You have so much pain sometimes that you wonder if fighting is worth it, and you feel like giving up.
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CAKE: A REVIEW OF JENNIFER ANISTON'S MOVIE ABOUT CHRONIC PAIN

Intense, disturbing, honest, and emotionally wrought – the words I would use to describe Jennifer Aniston’s most recent performance. Cake, for perhaps the first time in my movie-going experience, took me to a place so visceral, yet uncontrived, that I felt she understood my life…maybe even had seen me in some of my darkest hours.

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HEALTHY ATTITUDE MAINTAINING A HEALTHY ATTITUDE WHEN PHYSICAL HEALTH FAILS YOU

How many times have you found that you were viewing yourself as, predominantly, a person with a disease? Have you ever forgotten that you are a multi-faceted human being with talents, interests, desires, and abilities? How can we prevent ourselves from losing our identities when it seems our lives revolve around doctor appointments, pharmacy trips, limitations, breaks, fatigue, pain, helplessness, and relying on others for assistance?

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MYOSITIS "LIFE HACKS:" MAKE YOUR LIFE WITH MYOSITIS EASIER

Aquatic therapy has taught me a lot, aside from its obvious benefits of improved strength and flexibility. I have also learned about my ability to adapt to the limitations of my body.

How can Aquatic Therapy do that? It began in a very subtle way. My PT is very observant and began pointing out the “cheats” I have developed over the years for my physical weakness. 

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Caregivers, your life has changed, too.

I already knew I was sick when I met my husband, but we didn’t know, for certain, what or how serious it was. We just knew that things such as autoimmune disease, MS, Lupus, Cancer, Fibromyalgia, and others were being investigated. I knew, at that point, that I had a somewhat altered life due to the unknown malfunction in my body and I was honest about that with him from the beginning. But sometimes I wonder if he really understood the magnitude of what he was getting into.

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