Sunday, July 31, 2016
Welcome to my journey.
I created this blog in hopes of not only letting people into my journey, but also to help inform other patients, caregivers, or family members know more about the disorder. Yes, this is my journey, but a lot of what I go through many Chiari patients also experience. I also have Syringomyelia, degenerative disc disease, and a compressed thecal sac. If you have not figured out this creates a considerable amount of daily pain. I only recently discovered I have these disorders through MRI's, and a lot of heartache. At first doctors blamed my symptoms on Fibromyalgia, and later a possible diagnosis of MS. It was not until the possible diagnosis of MS that through an MRI Chiari was discovered. Then later it was an MRI on my entire spine, and this was when the other disorders were discovered. I believe that I have had this illness my entire life, but only recently (late 20's) that it became worse, and then in my 30's the pain became nearly unbearable. I have what they call CAPE pain, the pain radiates into my chest, around my ribs, and on both sides of my shoulders. I have a rare symptom of auditory and visual hallucinations. I trip over my own feet, and sometimes I can not walk. I am often beyond words tired. The pain wakes me up at night. I also have heart palpations. Despite, everything I go through I find beauty in everyday life. I love life. I love life so much that I am even going to school to be a geologist! Yes, despite everything I find time to go to school for something I love.