This song reminds me of me since my Moyamoya journey...it's Unwell by Matchbox 20. Take a listen if you can.

It's hard to describe but there is definitely a "me" that fits into what I call the BMM (before Moyamoya) category and AMM (yes, after). I see pictures of myself or my family or of anything really and my brain automatically categorizes it as before or after my diagnosis and surgeries. I was definitely a happier, more confident person before. I can see it in myself every day, and I can see it in pictures and videos.

Something changed in my core, my "who I am" with that diagnosis and treatment. I lost ALL confidence in myself. I think because something I trusted so much (myself and my body) failed me, it shook me to my core. I am now anxious about even the simplest things. I take an antidepressant that helps with that as well as low serotonin production. I used to sing at weddings, sing karaoke and now I quit choir at church because of low self esteem issues that hold me back. I suffer from being inadequate, or feeling that I am inadequate, for almost everything I do. And weight loss...don't even get me started on how much weight I've gained since "BMM". Uggg, that is a struggle that I see in the mirror every day that exacerbates all my other feelings. Maybe I need to find a stroke survivors support group, or near death support group or something like that, because I think others would understand what I am going through. It's almost like some kind of PTSD, maybe a support group for that as well. I have so many things to be happy for (I know that's not correct grammer) but yet I am not a happy person, and I'm not sure why.

I know I'm not crazy, just a little unwell...

I am not a fan of thunder and especially lightning. I have always been a weather wuss! I mean, if there is a lot of thunder we'll be in the basement. Right now we're having some loud, long thunder...Uggg! I am debating unplugging everything. Ever since our house was hit by lightning 9 months ago, I am even more afraid of storms. It was such a pain to replace all that was damaged!

Anyway, yesterday was day 1 without sugar. I did pretty well. I forgot for a split second and had a few pieces of my son's dry Cinnamon Toast Crunch cereal, mindlessly popped it into my mouth and then thought "what the heck am I doing?" I didn't even realize I was doing it either. Today is my first full day of low carbs (50 or less per day). I am so desperate to get this weight off, so exercise and fewer carbs for me now.

Mother's Day is coming up this weekend and I didn't even realize it. My husband asked what I wanted to do and I have no answer. I really can't think of anything that doesn't involve food. But a good buffet should have enough low carb options to make it worth it.

Happy Mother's Day to all the Moms out there and especially to all you other "Moyamoya Mommies"!

Happy 2nd Annual World Moyamoya Day!

Today was an emotionally exhausting day. So many suffering from Moyamoya, physical and emotional symptoms, as well as those suffering from the loss of family and friends. I spent the day with many tears; happy and sad. I am so proud of so many who spread awareness and advocate for us!

I posted a lot of stuff on Facebook today. Everything I found actually. I may have gone overboard a little bit, but it would be worth it if one person learned something, or hopefully it could save a life!

We all wore our World Moyamoya Day t-shirts today. I had to bribe my son with ice cream to get him to wear it, but he did. He doesn't like the brain on it. It freaks him out. He's 7 years old, but I know he remembers our trip to San Francisco for my surgeries. I think the memory freaks him out more, and he projects it onto the shirt.

I had my 3 year check up this past summer and had all restrictions removed. My brain looks normal! (Hey, no jokes about if it ever was really "normal") I was also very excited to attend the Stanford Moyamoya patient picnic. It was so awesome to meet so many other patients in person, not just online.

Anyway, I need to get back to blogging because I miss this outlet. There is something very theraputic about writing things out and letting them go into cyber-space.

Good night, peace and happy World Moyamoya Day!

It looks like it's been a while since I've posted.

We took our 6 1/2 year old son to see a Mental Health Specialist. He has been officially diagnosed with Separation Anxiety Disorder. I know his anxiety and panic attacks are a reality, but some how hearing the actual diagnosis is affecting me. I feel sad. I'm a stay at home mom and I feel like I have somehow failed him. This is my job, my desire, my life's dream, and I love my children more than anything in this world. I can't stop feeling like I've done something wrong.

We've raised both kids in the same house, in the same town. I've done the same early childhood classes with both. They've both had the same upbringing. I know every child is different, but Emily and Aiden are so different. Emily is a social flower, a dare devil. She loves roller coasters and can have a new friend within minutes of being somewhere new. Aiden suffers from extreme anxiety and panic attacks, to the point of affecting his life and ours. He then cries because he can't do things that his friends are doing. He understands why we are seeing his new doctor. He even said he wants to keep seeing her so that she can help him. At 6 1/2 he wants help and has asked for it. It breaks my heart to see him so upset and frustrated and angry with others and himself.

I have guilt and feel like I did something wrong. Did I do too much warning about stranger danger? Did I scare them too much by telling them how to fight and scream if someone tried to grab them or kidnap them? I know the realities of the real world. I was chased by two men in a brown van with a gun while walking home from school one day. I squeezed through a hole in a fence and ran into a liquor store. My worst fear is that someone would take my child and hurt them.

I know I do too much for my children and "over parent". I know they need more responsibility and need to do more things on their own. I just do things myself because it's easier than the fight and battle. I always cave when they refuse to do something and there are no consequences to them for not helping me.

I also wonder too if my Moyamoya caused this in him. He was 3 when I had my strokes and spent so much time in ICU and then had my 2 brain surgeries. He came to California with our family while I was in the hospital for my surgeries. Bruce was with him some of the time, but the majority of that 2 1/2 weeks he was with my sister-in-law, and was away from me. He saw me a few times through the hospital window, while hooked up to everything. Did I scare him? Is he afraid to leave me for fear that I won't return, or worse yet, die?

I just don't know, but I wish I could take away all of his pain, anger and frustration. It just breaks my heart.

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.