Monday was a very emotional day. As World Moyamoya Day, many people, from all over the world, posted their stories and pictures to our Facebook page. Many success stories, many promoting Moyamoya awareness, but so many losses too...young children, mothers, and other family members and friends. It doesn't have to be this way! Getting the correct diagnosis and treatment is so important, that's why I will continue to spread awareness and post relevant stories as I can. You might get sick of hearing it, but stroke awareness and knowledge of Moyamoya might one day help save a life!

This was a post I made on Facebook on the day following World Moyamoya Day, and one of my responses was that they were "glad my surgery was a success and I have no more problems". It's a seemingly harmless comment, to the uneducated, but to us who know Moyamoya, it's far from true.

I am very blessed that I found Dr. Steinberg and Stanford Medical Center, the leaders in Moyamoya disease. I am so thankful that I had bilateral STA-MCA surgery, but I am far from problem free. I'm afraid this post may turn into more of a rant, so bear with me...

I still have physical and psychological problems. I had 3 strokes and 2 life saving brain surgeries. They removed 2 golf ball sized chunks of my skull! 

• My left eye blinks slower than my right.
• My left hand has lost fine motor skills and strength
• I have 2 pretty gruesome scars
• I get headaches
• My head aches in cold weather due to screws and scar tissue
• My head, in my surgery areas, feels and sounds hollow to me when I touch it.
• I have a terrible memory
• I sometimes say the wrong word when I talk. It starts with the same letter of the alphabet, but is WAY off
• If I get up from a seated position too quickly I get dizzy. Like - hold on to something, close my eyes and breath through it for about 20 seconds - dizzy.

Nights when I go to bed with a headache, I am afraid to go to sleep. I am afraid I will have another stroke, since that's what started my Moyamoya journey...waking up, with left side weakness, from having a stroke in my sleep. My anxiety is high, and I have my husband check on me through the night to make sure I am alright. I am also afraid I won't wake up at all, I fear for myself and my family. How terrible would that be for them! I live with and think about these things all the time.

There is not a day that goes by that I do not have some reminder that I have Moyamoya. When I'm sick I have to worry about what medications I can take. On a sunny, bright day I can't wear sunglasses. I can't wear any glasses...they could cut off my blood flow to my brain, as they used the superficial temperal artery to do the bypass surgeries. The headaches and dizziness...at least one happens daily.

I just found out on Monday about a woman who had both STC-MCA surgeries and was doing very well, for 7 years. Earlier this year she had a stroke, was recovering and had another one, and she passed away. This really scares me! I am now terrified that, despite having these surgeries, something could still happen. I could still have another stroke! Thank goodness I go to Stanford next month for my 3 year check up, because I have some very real fears and concerns.

I am usually a pretty positive person, don't get me wrong. I am very blessed, but I am FAR from problem free.