Living with a rare, incurable disease teaches you quickly that language can be limiting, and that there’s no socially acceptable way to answer “How are you?” in under five seconds without lying, just a little. There are things I don’t say, not because they don’t matter, but because they don’t always need an audience.People ask Read more

Fear doesn’t always announce itself.Sometimes it’s quiet. Persistent. Sitting just beneath the surface of your day, humming while you try to live your life. Living with a rare, incurable disease like dermatomyositis means living with the unknown. And the unknown is fertile ground for fear. It’s the fear of what’s coming next.The fear of what Read more

It often takes Myositis patients an average of 3-5 years to be accurately diagnosed. This statistic holds true for most rare diseases. I can report that this was also true in my case. I started having symptoms in early 2018, shortly after being horribly sick for about 12 weeks. Seemingly out of nowhere my eyes Read more

My heart and my jaw were somewhere on the floor of that small exam room when I finally came back to real life. “Does anyone in your family have ALS” she asked again. “Um, no. No, I don’t think so” I replied. “It’s either ALS or Myositis. We’ll know more for sure when the bloodwork Read more