Ever since then, my husband, my kids, my cousins, my friends, ... everyone... Has been sending me pictures and completely overwhelming me in the best way with their love and support by wearing these shirts. It's amazing. I can't believe that this is happening. Every single time I see a new person in those shirts, I laugh and cry at the same time. It's such an amazing feeling.
I just finished my stay at Stanford for the video EEG. I ended up there 4 1/2ish days. I decided to help pass the time and to keep everyone updated, I would do a Facebook live feed. Everyone had a lot to say about the ridiculous things I had on my head. This was night one.
My husband thought it would be really funny to encourage everyone to make their own "Gauzehelmets".... And my friends were UP TO THE CHALLENGE.
I received pictures of people with actual gauze, but I also received pictures of my friends wrapped in toilet paper, ace bandages, and I don't even know what. My nurse came in and I was in tears from laughing so hard. I had to tell him that I was fine, I just had amazing friends and showed him the pictures. And he agreed, my friends are awesome.
I wasn't having any seizure activity, at least not any that was detected by the kind of electrodes they had with the "Gauzehelmet" so they decided to try a high density EEG. I got all dressed up like Jean Grey and posted a picture of my new "mask" and made a comment to Randy, "I can't wait to see how my friends copy this look." He laughed and said "They aren't going to be able to copy this."
PSHHHHH.... He forgot he was dealing with theatre people. My amazingly hilarious friend, Maureen, followed up with a picture of stickers all over her face, and I nearly died. It was so hilarious. So that became the challenge for my friends, sticker faces.... Not to be outdone, I did have a friend put post-its on his face.
You guys... MY FRIENDS AND FAMILY ARE AMAZING.
I couldn't have survived the hospital stay without that. It was so great.
When I FINALLY started having seizures, and "beautiful brain spikes" and the doctor were able to see what they wanted, we now know that the seizures are coming from the same area as before.
The doctors at the clinic gave me a few options, but I speak with my neurologist next week, so I'm not sure if they will be the same options or not.
Basically we are down to the same surgery again, a more intense surgery, OR more intense/invasive testing... that involves surgery. (implanting needle electrodes into my brain so they can get a better diagnosis about where exactly they’re coming from so they can REALLY pinpoint what to take out before just taking out or burning part of my brain)
The dr explained it like this-
He looked at my room at said “Look at your bed, your husbands cot and the chair. Let’s say we went in thinking the problem was the bed and we took the bed away. Now you’re still seizing. Do we go in and take out the cot and find out it’s the chair?”
But after the seizures and the sensations I explained, he said it could be “insula” which are basically like cracks coming off of where the first spot was.
He said to think of it like a crack in the sidewalk- it keeps growing.
If the seizures are stemming from the insula, they can’t go in and remove anything because that will probably keep happening.
Doesn't that sound just lovely??? But I don't want them taking anymore of my brain out or burning more off, because it's my brain... And they can't put it back in. So... Here we are.
We will see what my doctor says on Monday and go from there.
I can't say thank you enough to my friends and family for their love and support and their care packages and their silly pictures and their T-shirts. I love you all so much.
Cherish your friends everyone.
