So, it's 3:00am and I am up. I can't sleep. I suppose the nerves and anxiety of going back to Stanford for my 3 year check up is kicking in. I feel fine, and I'm confident all my testing will be fine, but there's a small part of me that says "Ya, but...what if...". It's a scary place to be. With Moyamoya the reality of suffering, dying and death is so real...I see it every day. I pray a lot, and try very hard to send all my worries and concerns up to Him. He is my rock...

Going back to bed an hour later now to see if I can get anymore sleep. Flying is hard enough on a Moyamoya brain, I don't want to be sleep deprived as well. Good night!

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.

I go back to San Francisco in June. My mom is going to go with me, for kind of a Girl's Trip, with some medical junk thrown in. I have the flights made, the rental car and the hotel reservation made. Looks like we're all ready to go!

I am also excited that we get to go to the annual Stanford Moyamoya picnic as well. I've been wanting to go for so long, and am so happy that I could work in my check up around that weekend!

My weight loss so far...

I am proud to say that I am currently down 23 pounds, and have about 37 to go. I am on my way... :)

When I got sick, and had 3 strokes and was told I would die without these 2 life saving brain surgeries it shook me to my core. It was the most scared I have ever been in my life, not only for me but for my family as well, my kids were 2 (almost 3) and 4. I lost a lot of myself during that time. I lost control of my life, had to depend on others, and lost confidence in myself and my abilities. I mean, if my body failed me, to the point of almost dying, what am I worth? I really lost a lot of self worth and esteem and spent a lot of time being afraid to even try doing anything. I reverted inward, and put up a lot of walls to protect myself. I'm slowly starting to gain myself again, starting to come out of my shell, bringing down my walls...feeling very vulnerable and out of my comfort zone, but I know the only way to grow is to step out of those comfort zones, and I really feel good and ready to do this for myself!

I can't believe my baby girl will be 8 years old on Sunday! Wow...where does the time go?

We were supper blessed to have her, after 11 years, 3 months and 22 days, many infertility procedures, including IVF, and many, many heart-breaking days...she was worth it all though!!! 

What an amazing tattoo! I just had to share... (it's not mine, but another Moyamoya Survivor's)

There are so many out there trying to promote awareness for this extremely rare disease. There is so much unknown, there are even some doctors who have never heard of it. We need to make sure we get the word out, and educate all who will listen!