Update

Things have been (slowly) moving along.

My insurance isn't convinced that my test at UCSF is medically neecessary. (What?!) So they are waiting on so many things. They sent it in for review, twice. My Neuro and other doctors have vouched for me, saying that I NEED this test. Insurance still isn't totally convinced. SO THAT MEANS- I wait. I wait and wait. It's scheduled for April 20th and the longer I wait the more expensive travel will be. I also can't be sure the boys will be able to come with me because they need ample time to get the days off.
It's super frustrating. I have been on the phone pretty much daily with insurance people, radiology people, my neuro's office, etc etc etc.

SO MY OTHER TEST. Remember the one (MEG) where I have to check in to the hospital for like a week? It's scheduled. June 13th. Yeah, JUNE. My Neuro is working on that, trying to make it sooner. Because every extra day is just that much longer until surgery and Epilepsy freedom. He is just as excited to see me succeed at this.
When I check in, I will be attached to an EEG monitor the whole time. If I need to use the bathroom, I get a personal assistant. Cool right? No. It's not. I did this last June and hated every moment of it. I am not allowed to get out of bed for very long and if I do, I am watched. OH! And they reduce my meds to try and trigger a seizure and a nurse sits two feet away the entire time. AS SOON AS I HAVE A SEIZURE, the nurse injects radioactive tracer into my IV and an hour later they take me to MRI. I've written about this before. It's just such a crap procedure. I will be in the hospital for at least 5 days, sometimes it's longer.
The fun parts (The crappy parts)- No showering the entire time. No solo bathroom time. I am watched constantly by a nurse and there is a camera in the room watching me. I literally have to sit in bed 24/7. For 5 days. AND I have to have a seizure. So that means for like a week or more after I will be super lethargic and out of it.
I still can't remember much about the week after my last Gran Mal seizure. We went to the movies, and shopping, and out to dinner. I remember there was a dinosaur in the movie. That's pretty much IT. Scary right?
I'm rambling. I hate the hospital. So much. I know it is a means to an end, it is still super frustrating.

If I get all these tests done and finished soon, I should have a surgery date for late June or sometime in July. It feels so far away. This was supposed to happen now. My surgery date was supposed to be in April. But here I am, still plugging away. As much as I hate the hospital, I just want this to be OVER.

Anyway. There's an update.

-Mimi



ALSO- my friends set up that GoFundMe. I am still super blown away by all the support.
-How do you thank someone for that? I feel as if nothing can compare. I just love them all so much and feel as if I am not showing that. All of a sudden I am shy? Weird.
 I love y'all.