What don’t you see?


Hope Soup

People are always telling me what a great picture this is, and how beautiful I am. What I wish they would say is, “How are you?” Not that I could ever make them understand the pain, loneliness, and loss I feel on a daily basis. I have Chiari Malformation, and Ehlers-Danlos Syndrome, and they both rule my life. This is my story.

I was diagnosed with Chiari Malformation in February 2013. I had the worst headache of my life, and thought I was having a stroke at 29 years old. My husband rushed me to the ER and the doctor ordered a cat-scan. When she got the results back, she saw a mass at the base of my brain that was herniating into my spinal column.

She said it was either a brain tumor, or Chiari, something I never heard of before. After being discharged from the hospital, it was…

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