I'm going to document my experience this morning just so I have a record of it.

I'm pretty sure I had a TIA (trans ischemic stroke) this morning. At about 7:30 this morning, after waiting for the bus with my daughter, I felt kind of dizzy and *fuzzy*. It's hard to explain. My right arm, from shoulder to elbow also felt -- different. Again, hard to explain...slightly heavy and cold feeling. My head also felt tight and fuzzy. I could easily lose focus on what I was doing at the computer and just sit and stare if I didn't actually look at it. I felt pretty tired and worn out this morning as well. It resolved after about an hour. I now have a slight headache, nothing major.

I know this is common with Moyamoya patients, even post surgery. The surgery is to prevent the big, debilitating stroke, the life changers...TIAs are a possibility for life. I'm going to look more on the Stanford Moyamoya site and see if I can get some information.

Apparently, Moyamoya and blowing up balloons do NOT mix.

I just blew up about 30 balloons and when I got up to walk, after about 5 steps I lost use of my left arm and both legs. I had to hang on to the center island in my kitchen for about a minute before it passed. It was scary and I wondered if I would pass out. Thankfully I didn't!

I have to remember to get up slower next time I blow up balloons.

Happy 39th birthday to my wonderful husband!!!!

One year ago today, on my husband's 38th birthday, we had an appointment with Dr. McCue. Dr. McCue is the brain surgeon that works with Abbott Northwestern Hospital. I remember that visit clearly...

While we waited, Bruce filled out all my paperwork that they needed. He was so good about filling out the paperwork for me wherever we were. It was nice. I was so distanced from everything, it was just easier for me to let him do it.

I remember Dr. McCue himself walking out to the waiting room to get me for my appointment. He said "So, you're the famous Dawn Rxxxxxx...It's good to finally put a face to the name. I have spent more time looking at your file and tests than anyone else, and I've never even met you".

He took us back to his office. It seemed like the walk took forever. I was so nervous and scared, I had tunnel vision. So much so, I tried to sit in his chair behind his desk instead of the ones on the other side that I was supposed to sit in. Bruce did most of the talking, I was just kind of *there*. He told us that he couldn't do the kind of surgery that I needed. That's when Bruce brought up Dr. Steinberg at Stanford and Dr. Meyer at Mayo. Dr. McCue knew of both, and said that he had gone to a seminar recently that Dr. Steinberg had on Moyamoya. He also said he had a book by Dr. Meyer and handed it to Bruce to look at. It had his picture on the back of it.

Dr. McCue also took us down the hall to show us a scan of my brain. I don't recall if it was CT, MRI or what, but he showed us the Moyamoya vessels and pointed to a blood vessel on the outside of my skull and said "That one right there (as he followed it with his pen) is every Neurosurgeon's dream!" -- meaning it was a very good candidate for the donor procedure.

We left that appointment knowing full well that there was no one there that could help us. It was good because we had already committed to Dr. Steinberg in Stanford and the meeting very much reassured us that we'd made the right decision.

I was laying in bed last night and remembered something so sweet it brought a tear to my eye.

When I was on the Neurology floor recovering from my second surgery I had this really cool nurse! She allowed me to go outside (Neurology is on the first floor) and visit my family. At the time, no one under 16 was allowed in the hospital. She let me wheel my IV stand, all hooked up, outside to a picnic table to sit and visit my family. My son, who had just turned 3 (during the 2 days off I had with them between surgeries) was a little apprehensive. He asked many questions...What is that mom...what is that hooked too, what does that do...what is that for? He stayed on the other side of the table with my husband. My daughter, who was 4 1/2 at the time wasn't phased by any of it. She climbed right into my lap, cuddled right in, put her little hand on my cheek and gave me a huge smile and said "Beautiful Mommy!". I was FAR from beautiful with staples and bandages on my shaved head and glued straight up hair. I looked exactly like The Bride of Frankenstein, but to her I was beautiful. That is one of my best memories ever...and it was during one of the worst times of my life.

I just wanted to say too, that if you are reading this, there will be a lot of reminiscing for the next few months. You may get sick of hearing about it, day after day, but, I have a lot of feelings and emotions about it still and this is my place to get them out. I think, to me, once you go through something like this, it's such a part of you, and makes such an impact in your life, you don't just "get over it". I'm finding that the emotion of it all, comes to you when it comes to you. I'm a survivor, from a deadly disease...I mean, come on...that is something HUGE to me. Please hang tight...

Happy Halloween!

Well, it was last night and I so enjoyed taking my kids trick-or-treating. My daughter, 5 1/2 and son, just about 4, had a blast!!!!! I enjoyed actually being able to walk around with them. I remember last year having a bad headache that sent me home early. I tried to forget about last year, but I have to admit, thoughts crept into my head from time to time.

I thought I wouldn't be able to sleep last night. Well, I was so tired! We DVR'd the football game and watched it until late and I slept very well. We laid in bed for a few minutes, remembering how I used to be so afraid to fall asleep that I made my husband and myself sleep with the lights on. I also made him wake me up after a few hours to make sure I was ok. I was so afraid I wasn't going to wake up again...but I always did. :)

One year ago today...

Is when I woke up having had *the stroke* (one of 3) that started my Moyamoya journey.

All I can say is WHAT A DIFFERENCE A YEAR MAKES!!!!!!

People who don't know or understand tell me relax, it's all past you now. Well, actually, the strokes and surgeries are behind me, but there isn't a day that goes by where I can forget I have Moyamoya. I WILL ALWAYS HAVE MOYAMOYA! It cannot be cured, only surgically bypassed, which is just as good as a cure, but those Moyamoya vessels will always be there, and will always be blocked. Also, a few times a day, when I go from sitting to a standing/walking motion I get dizzy and light-headed. Not horribly, but enough that it feels better to hold on to something, close my eyes and hang or rest my head. My left foot also slightly *hums* (for a lack of a better description). It isn't really noticeable during the day but when I lay down at night to go to sleep and am still, I can feel it. Just another subtle reminder that I have Moyamoya.

But, I AM SO LUCKY! Those are the only effects that I have, and I can totally live with it!

***Just on a side note... November will be an emotional time for me. Last year at this time we were so lost and confused. All these scary things were happening to me and the doctors I was seeing had no idea what was going on. I was in and out of ICU a few times, as well as admitted to a small, local hospital. I had so much testing done and had everyone so scared and worried. It was a really scary month. ***