Inclusion Body Myositis

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I love my life

My life is miserable because im disabled and scared. I didnt plan to be disabled at 68 years old. In fact becoming disabled was the last thing on my mind. Where can i live, how do i pay for an assisted care home, whats going to happen to me? Im scared and lonely and i dont want to give up on life and want to be useful. I was diagnosed with IBM ( inclusion body myositis ) 3 years ago. I have a muscle disease where my body is attacking my muscles. It starts in your arm and hands then legs making it difficult to walk. I know im rambling on but these are my thoughts and im reaching out to anyone else that feels this way. Please help.

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The End

“Everything is okay in the end. If it’s not okay, it’s not the end.”

That’s the quote I provided for my high school yearbook my graduating year. I probably picked the quote because, in my limited 19 years experience, it may have been true. I can’t think of much that happened to my in those years that wasn’t “okay in the end”. I had had a happy childhood in a small town. We lived in a big house. I was thin and pretty and popular. I got straight As without much effort. I had two boyfriends in high school, both of whom dumped me, but even that was “okay in the end”.

The first funeral I ever went to was my grandfather’s. A lifelong smoker, he had had heart problems my entire life, suffering multiple strokes and undergoing multiple surgeries. To hear my mother tell it, he outlived the doctors’ predictions by about 20 years. At 73, he died peacefully and poetically following a motorcycle ride. I was thirteen. I believed that death was something that happened only after you had accomplished all of your dreams.

My early adult years were slightly more stressful than my childhood and teenage years. University was more challenging for me academically than public or secondary school had been. I legitimately believed that I was at risk of failing a couple of classes and I once cried in my organic chemistry professor’s office, but I graduated with honours and therefore it was “okay in the end”. I drank too much and had sexual experiences that I probably shouldn’t have, but you can’t regret what you don’t remember, so that too was “okay in the end”. One year, in my 20s, I was laid off twice and thought I had #CervicalCancer, but I got a new job and a LEEP and it was all “okay in the end”. After 4 years of dating, 2 years of living together and a promise ring, my first serious adult boyfriend told me on the way to work one morning that he thought we should see other people. Two months later, I tried my hand at online dating and met my future husband so yeah, “okay in the end”. Six months after we were married, my husband and I had a #Miscarriage. I was 11 weeks pregnant and it was tough as hell, but three months later, we were pregnant again so even that, the most difficult experience in my first 35 years, was “okay in the end”.

Now, I’m 36 and I have a beautiful baby girl and a loving husband. Everything is almost perfect! The only problem is that my muscles are wasting away. I assume that I have #InclusionBodyMyositis, a progressive muscle disorder characterized by muscle inflammation, weakness and atrophy. This is not okay! I’m not okay with this ending! My baby girl and my husband do not deserve this.


Did you know #InclusionBodyMyositis is a rare inflammatory and degenerative muscle disease? #Myositis #InclusionBodyMyositis

IBM is NOT normal aging and there are currently no treatments available. We at MSU are doing more to help.#MSU