Saturday, June 20, 2015

Spreading Awareness About Cavernous Angiomas

Thankful for Every Day!
Monday, January 16, 2012

Since being diagnosed with a cavernous angioma in September 2009, my life has changed greatly. I never really had a "cause". Many people are touched by one thing or another along their path of life and they get motivated to make that their "cause". While I had been touched by many things, no specific thing moved me like this diagnosis and all the emotional ramifications that this diagnosis created for me. In finding Angioma Alliance, I have also made dear friends that share in this dreadful diagnosis...many of them have it much harder than I do/did. I was blessed to hopefully only have one bleeding mess in my brain. Some of my friends have multiples or they have them in a location that prevents surgical treatment. For many of my friends there is no cure yet. :( I hope that will change in time, and I intend to do my part to help be a part of the cure. I have taken on trying to spread awareness about cavernous angiomas as a part of trying to better the lives of "us" afflicted with this condition.  While I...hopefully.. no longer have a cavernous angioma I will always identify with those afflicted. I have been there/done that! I understand how hard it is to live with the uncertaintly, the bleeding, the seizures, the deficits, the surgery, and the recovery.

I am not a professional writer...I was a math and science lady prior to all my brain problems. Writing has never been my thing. I didn't start writing until I found a "cause" or rather my "cause" found me. I originally wanted to be a doctor but changed my mind many years ago. My degrees and work experience are in psychology and nursing. With that said, I have been writing this blog since just prior to my surgery. I originally started it to keep friends and loved ones informed...and as a much needed source for positive feedback and encouragement during my darkest days...but it has become something very different. It now is my voice for spreading awareness about cavernous angiomas and sometimes stroke recovery. While professional writers probably cringe while reading my blog...fragments/run-ons, grammatical errors, punctuation all wrong, as well as my casual writing writing is anything but professional. Proper writing aside, what I am presenting is my side to the story. My experience with cavernous angiomas, brain surgery, stroke, and stroke recovery. As part of my continuing push to spread awareness, I sent my story to a few publications...hoping they would publish it and help to raise awareness. The first place I sent my story was to Stroke Connection. It's a magazine put out by the American Heart Association. I submitted my story 9 or 10 months ago and they called a few months ago letting me know they selected my story. I am never short on words and my story was extensively edited down to a mere 500 words.

The published version varies dramatically from my submitted version, but non the less here it is! Stroke connection article while my article was edited extensively, I still perceive it as a win for my cause and I hope it is only the start of great things to come. I would love to see the day when physicians actually know something about cavernous angiomas and treatment involves something less invasive than crainiotomy. I will continue my advocacy for this condition and my dear friends afflicted with it.

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