MEG Scan.

We are going to start this post with a back story. Y'all ready? Ok good.

So, I grew up in California. (I know, I know. Don't lynch me. We didn't move directly to Portland, we aren't THOSE Californians. We went to Seattle first, got all the California cleaned off, THEN we went to Portland.) Anyway- NorCal is my first home. I hate it there. Whoever said- "You can't go home again" wasn't kidding. Every time we go back to visit, I get more depressed and try to figure out why I was there for 30 years and how I didn't go absolutely insane. The point of this? San Francisco is like, 3 hours from where I grew up. I have been to San Francisco 56088326435987782 times in my life. Yes, that many. We used to drive my friends scary van there (Scary because it was this huge cargo van with no seat belts...or seats, except Driver and passenger. We would load up with 10 of our friends and drive to S.F. to walk on the Haight and buy overpriced crap from the 'hippy' shops there. The hills in that van were...fucking terrifying) So much has changed. But we were from a SUPER SMALL TOWN in the sticks. (People from my hometown always want to argue me on this one. "It's not that bad" they say. It made the list of top 10 scariest places in California to live. (because meth. Y'all think Gresham is bad?? NOPE) Then the top 10 worst places to live. I mean COME ON, we won over OAKLAND. But it's not that bad?!?! It's that bad)
I'm off on a rant. SorryNotSorry. It's my blog. I do what I want.
MY POINT IS- When my brain doctor said I would need to go to UCSF for this scan I was like, whatever dude. It was not a vacation. In fact I am still here and I don't even, I can't even. The breakfast buffet at this hotel (Red Lion. In Oakland, right by the Airport) was the most interesting buffet I have had, ever. There was like, Steamed Pork Buns, Hard boiled eggs, Fried potatoes, fake scrambled Eggs, and Vegetable Fried Rice, Congee, cinnamon buns, Sausage, and cereal. I couldn't tell if my taste buds were excited or horrified. I mean, I ate it. Because food ya'll. But coffee and fried rice is NOT good together. Ever. I just want to go home.

Ok, I'll get to the point (Maybe). This scan is paramount to my surgery. It shows where my brain reacts to things. See, when they do the surgery they don't want to cut out stuff I need. Like my language center, and stuff that's important like that. This scan was like a map for my brain. Here's a link to what it is: MEG Scan
   Let's talk about what was done- They took these electrodes, which I wish I had taken a picture of, but I was so exhausted by the time I got there, I was just angry. (They told me to show up tired so we took a 7a.m. flight. To piss me off- my body and brain woke me up at 3:15 a.m. and wouldn't let me sleep any longer. I was NOT a happy person. At all) The electrodes were then glued to my scalp in some order that made sense to the technician. There were rulers and measuring tape involved. Oh, and I had to take all my piercings out and my bra off because the machine is super sensitive to all metals. She also asked how many fillings I had and is that a crown in my mouth or what. It was weird.
The electrodes were glued on, including one on my cheek and right next to my left eye. Then they took me to the machine. I lay down and they put some more electrodes on. One next to each ear and one in the middle of my forehead. I REALLY wish I had a picture. I'm sure it was hilarious. They made me a gauze hat to keep all the electrodes in their proper place, and shoved my head into the head hole in the machine, put a blanket over me and were like: "Sleep for an hour if you can. Bye Felicia" and locked me in. The room was a creepy chamber and the door was like a bank vault door and 12 or so inches thick.
Did I sleep? Sorta. All the electrodes were pushed up against my scalp. The pressure of that was insane. But I was SO TIRED. I fell asleep a few times- woke myself up snoring. I was on my back, it was uncomfortable. I eventually woke all the way up and couldn't take the head pressure any longer so they noticed I was awake and came in to let me lay on a pillow for a few. I couldn't sit up or anything, the electrodes were plugged in to something and I was attached to the machine. (Did I mention this is a 2+ hour test? It is)
Then they taped finger things (Yep, totally medical name. Swear. Finger things) to my fingers. It was like tiny air compressors. Then they put me back in the machine and the finger things like, pushed against my finger tips. It's hard to explain. It was a totally weird feeling. For 4 minutes. After, they came back in and took them off. More on that in a minute.
NEXT- they put earbuds in my ears. (Remember I can't really move.) This was a test to see how my brain reacts to words or whatever. They piped in nouns and I had to answer with a verb. Did I mention I was completely exhausted? I mean, completely, ABSOLUTELY exhausted. I feel as if that isn't even a good word to describe how tired I was. I wonder if they are now listening to the recording of me answering and laughing. So many Ums and uhhs.  The voice asked me all the same words 2 or 3 times. By the time I was done, I was ready for another nap. They came in and pulled the earbuds out, and told me to rest for awhile. So I fell asleep again. Sort of. It was a weird- I am aware of what is going on around me- sleep. After about 20 mins (Or forever. There was no clock) I started getting uncomfortable again. Those electrodes are not comfy. One of the technicians speaks through the speaker "How are you doing? Just a few more minutes, ok?" I mean, do I have a choice? No. So I actually started counting. Then I was focused on that instead of the pain in my head. For a few minutes anyway.
The door finally opened again. They took my head out and sat me up. CAN YOU SAY DIZZY? I almost passed out. The technician pulled the electrodes off . I slowly made my way out and sat on a chair. The technician was scrubbing the glue off my head. On the computer next to me were my brain waves. I was looking at them and asked what part of the test it was. The finger thing test was on the screen. She showed me what my brain waves looked like when it reacted to the test. The left side of my brain (where my epilepsy focal point is located) was WAY crazier than the right. She said that doesn't necessarily mean anything. Then she showed me the map of my brain while it was reacting to the finger thing test. There was like, pretty colors. On the left it was RED and blue and etc. My brain has pretty colors.

You getting bored of reading this yet? Just wait, I took fun pictures.

My mom had driven from my hometown to pick us (Ethan was with me) up from the airport and take me to the test. We had parked in this garage ($4 every 20 mins of parking. NOPE). She had left her car and Ethan and her had gone to ghirardelli square to eat and whatever. I was trying to call them and tell them I was done, but my phone decided it hates California and wouldn't connect. Oh, and it was dying.
So here I am, in this bathroom at UCSF trying to put my piercings back in, and call my Mom, and I keep forgetting what I am doing because exhaustion. Also, I was so hungry and thirsty. I finally got them on the phone and they were looking for a ride back. So I bought Pringles and water in the gift shop to sit and wait. ($3 for a bottle of water. Ludicrous.) I answered emails and stuff on my phone. (Sorry to whoever I emailed. I don't know if any of it made sense) and I waited. They showed and we went to the hotel.
DID I EVEN MENTION THAT IT WAS 4/20?!?!?! Every 4/20 all the stoners in SFO and surrounding all gather in Golden Gate Park to smoke it up. The traffic was insane. We had to drive through the Haight. The smell was so thick it was coming into the car. I was like: "Ethan, hold your breath. You'll get so contact high" It took us FOREVER to get to the East Bay. While driving, there was a plane flying over with a HUGE banner that said:"SMOKE WEED". I tried to get a picture. Didn't work out.
Anyway, Hotel..
Another short backstory- In December of 2015, the twins, Ethan and I went to visit our hometown and our mom took us to Alcatraz in San Fran. We stayed at a hotel and the thermostat was broken and they switched our room. It was a small nightmare because it's an ass to switch rooms after you are already in there with all your stuff. Then we set off the fire alarm. Good times.
ANYWAY- Mom brings us to our hotel in Oakland (We fly home out of Oakland airport), we get our room keys, unload our stuff, sit around for awhile, and go to dinner. We had noticed there was no shower curtain on the shower so when we got back I call the front desk. Mom was joking that maybe someone died in the tub so they had wrapped them in the shower curtain to get rid of the body. I mean, we are in Oakland. Seems legit. (Sorry to any Oakland residents, or past residents. I was born in Alameda. Oakland still sucks. Oh, and the Raiders suck too. AAANND the A's.) I call the front desk to tell them- the front desk lady is like: "I'll call you back" She calls me back 30 seconds later: "Come on down here we are going to switch your room"
WHY? I don't know. I wasn't going to ask questions. (Ok I was, but by the time we got down there, I didn't care).
They put us on the top floor. Ethan was excited. In the elevator I looked at Mom: "Why is it every time you are at a hotel with us, our room gets changed? Haha" It was cool though. Imagine all the shampoo and crappy coffee samples I have now! Mom went back home at 9. Bye Mom! See you soon.
I was asleep by 9:30. SO OF COURSE I WOKE UP AT 5:30 THIS MORNING. Fuck my brain. The ONE day I can sleep in, and NOPE.
I am still tired. I'm totally not sorry this post is so long.
I promised pictures. Here:

 See the ground? The brown part is how thick the door was. BIG scary bank vault door.

 THE MACHINE. My head was in that hole. Yes, those are mirrors on the ceiling. I did not ask what for. I didn't want to know.

 Part of the MEG machine.

 The HOT H20? Was lukewarm.


WHAT'S NEXT?! The SPECT scan is next. It's a week long test. I will be at OHSU. (Yes, that means you can visit me). I will be attached to the wall for 5+ days. They wait for me to have a seizure, inject a radioactive tracer into my I.V. and wait an hour. Then they take an MRI to see what and where it lights up.
THEN I get a surgery date.
WHY DOES THIS TAKE SO LONG? I don't know. My doctor is trying to hurry it along. So far, my SPECT is scheduled for the week of June 13. But it could change if he talks to his people. We will see.

One more thing. This trip for this test would NOT be possible if it wasn't for my derby family. I love ya'll for donating to my gofundme and for using airline miles, and for giving me kind words and thoughts. Ya'll are amazing. I love you.

-Mimi

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.