Today is not a day for a whole lot of celebration. It was exactly one year ago today when I went under for my first surgery for Moyamoya. It's hard not to think about that day. I don't remember the surgery, but I do remember my time in ICU that night and the frequent request for pain medication. Oh and I do recall the blood transfusion. What memories!
I'd like to think my perspective on life has changed. I know I am extremely thankful I have been able to maintain an active lifestyle. I don't have the little bit of flexibility I had before the surgeries, but my endurance and strength has improved leaps and bounds from a year ago.
There isn't a day that goes by where I don't think about the disease or the experience at Stanford. I try to keep up with activity on the Moyamoya.com message board. I have tried to share my experience with those that have had questions on surgery or symptoms. I still feel like I should do more. I feel like I lucked out compared to some, based on the stories I've read of those diagnosed with the disease. I have no plans to become a neurosurgeon and I can't donate blood, but I am looking for ways to help whether it's participating on message boards, donating, or participating in medical studies...I'd like to see earlier diagnosis and answers to whether it's genetic and linked to other vascular conditions.
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