I am a part time writer, full time undiagnosed chronic pain and movement disorder (previously thought to be epilepsy) patient.
Writing is a way of dealing with the pain for me. Hopefully if I put it out there someone else will understand it too, and won’t feel so alone anymore.
I have started a vlog where I read the poetry I have written here and explain where it came from. I will also, hopefully, explain the various disorders and illnesses doctors have tried to diagnose me with and educate all my viewers, and readers, on movement disorders, depression, epilepsy and suicide.
Here’s the vlog link:
Hello, my name is Andrea Rose. I have an undiagnosed illness. We have some guesses but that’s about it. The guesses, are myoclonus, a rare movement disorder, and chronic pain.
Myoclonus is an involuntary movement. Hiccups are a form of myoclonus that pretty much everyone has. Sometime when people are drifting off to sleep they will jerk awake again. This can also be a normal myoclonus response.
I have almost constant jerking of my left side when not on properly medicated. I am currently going through a diagnosis process that will determine if I truly have myoclonus or something else entirely, and perhaps how I ended up with it.
I also have a chronic pain disorder. Mostly, surprise! to the left side.
I am currently three years into this medical journey and so far the doctor that doesn’t immediately just say it’s psychosomatic is rare. If you’d like to join me, I will try to post regularly, if not poems than some other form of expression.
I am beginning to add more forms of writing to my repertoire. I began this blog with poems, but I hope to evolve to posting my short stories and maybe even scenes from the novel I’m working on. I’m beginning to truly believe that maybe there is an author inside of me. For that I have to thank the followers I have had so far. They have shown me I’m not alone in the world. I hope I can give all my readers that same sense of belonging.