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. 

Don't forget today.

Ok, new news first:
OHSU called me yesterday. They have my paperwork and the go ahead from insurance. This has taken FOREVER so as much as I am not looking forward to the SPECT scan, I am glad it's getting moving. This is not the surgery, just ANOTHER test.
I told the family. They are preparing in their own ways. I will freeze all of the crockpot meals I can in preparation. Ethan will need to get himself up and to the MAX every morning. I will likely be in the hospital for about 5 days, attached to the wall, waiting to have a seizure so I can be shot up with radioactive materials. So I can come home.
Good times.

Spect Scan images. This is not my brain. I will ask if I can have copies of my images. Because they are mine and I want them. And I will frame them and hang them on the wall. Because I can.


Some derby badasses made us a GoFundMe.
Operation Wrecktemporal Lobe

 I am still speechless. I have had friends, I have had close friends. I have never had friends who were SO on my side. I feel like I have a constant cheering section. I also feel unworthy of the attention. Who the hell am I to have such amazing people? Derby is the best thing that ever happened to my family. My outlook on life has changed so much in the last year. I wouldn't change a thing.
I cried and blubbered for 24 hours straight, it felt like. At one point I was in the shower and just broke down. It was a Tobias Funke moment.

The boys are even speechless. Well, the twins. Ethan is like: "Why are people doing this? Why are they so nice?" My poor child. Already thinks the entire world is out to get us. So jaded. I blame myself. I wasted so many years being so damn angry with everything.
Evan and Dylan are different. Dylan was like: "I'm so glad we came to Portland. We found our people. This is our home"
It really is bro, it really is.

Next we wait for insurance to get their crap together so I can get to UCSF to have that fun test. AND THEN I will get a surgery date. So many things. SO MANY THINGS. Also, my Neuro is constantly in contact with me, because did I tell you that my brain has decided to have a near constant party without my permission? I had over 10 seizures the other day. (Not Gran Mal, or Tonic Clonic. Just little ones. Still crap. )

I often get caught up in all this and forget to stop and look around. At practice on Sunday I was doing all the things. Don't get me wrong, I am still super slow and a little baby deer like, but I haven't seen chair in weeks. This upcoming Sunday is a new class of 101'ers and I'm excited to skate with them. Who knows, maybe I will finally be able to do everything.
Life is good. Despite the fact that my brain is an asshole, life is really good.  

That's all folks. I'll let you know when something else is exciting.

What's next?

Saw my Neurologist yesterday. We spoke about the next steps to take towards surgery. We also spoke about what will happen if I can't have the Lobectomy.

As of now, the Epilepsy point in my brain is originating from my left temporal lobe. The left temporal lobe also houses the language center, memories, and other important things. About 1/3 of the temporal lobe can be safely removed without affecting language or anything. BUT, first it must be determined exactly what point the seizures originate. If it is determined the seizure focus is too close to anything important, then the Lobectomy will not be possible without problems, so it won't happen.

What does this mean?! It means I need more tests. All the tests. One of them is called a MEG scan. I get to put my head in this ridiculous looking machine and they look at my brain activity. Since there is no MEG machine in the state of Oregon, this is the test I need to travel to California for. The closest MEG machine is at UCSF. As soon as insurance stops dragging their feet and pushes the paperwork through, I will schedule a date to go.
Here's more info on MEG, if you are interested: https://en.wikipedia.org/wiki/Magnetoencephalography

The other test is a SPECT scan. I will be admitted to the hospital for a few days. Anyone who knows how much I hate hospitals knows how much I am not looking forward to this.
Anyway, I am admitted into the Epilepsy Monitoring Unit at OHSU. They will lower my meds and wait. When I have a seizure, a nurse will immediately inject a radioactive tracer into my IV and about an hour later they will put me into a machine that looks at post seizure brain activity. I will likely be asleep for that, as seizures are very tiring and it's hard to function for awhile after.
Here's more info on the SPECT scan: https://en.wikipedia.org/wiki/Single-photon_emission_computed_tomography

Thanks Wikipedia, for your knowledge.

The next thing that will happen, after the SPECT and the MEG: I will be admitted to the hospital and they will open my skull- and an intracranial electrode grid will be inserted directly onto the gray matter. The electrodes will 'map' where things are in my brain. Like speech and memory and etc. I may have to be awake for parts of this surgery to make sure they get it in the right places. That can't be determined until after the other tests. They leave the grid on for a couple days and hope to record a seizure or two. AND THEN- after all that- THEN it will be determined if I can have the lobectomy. If it is unsafe or too close to important things- the lobectomy will not happen.
Here's more info on the grid: https://en.wikipedia.org/wiki/Electrocorticography

SO WHAT WILL HAPPEN?! Well, my Neuro and I had a long conversation about that. I am a great candidate for an RNS. That's this little device that sits directly onto my brain. He had one and showed me what is was like. It looks sort of like a flat fitbit thing. It records seizure and some brain activity and can connect to a remote monitor so information can be seen. Also my doctor will have a way to see what's happening. The RNS scares the crap out of me. I would feel like ROBOMIMI. But if the lobectomy can't happen, this is the next best thing.
Here's the Wiki on the RNS: https://en.wikipedia.org/wiki/Responsive_neurostimulation_device

So surgery is still on the horizon. My doc is optimistic that everything will go well and keeps reassuring me. He is a good guy, I trust him with my brain. I am hoping things go fast because I would really like for this to be over.

Okay, I have taken up enough of your day.

-Mimi

Neuropsychology

I totally forgot to post my Neuropsychology testing. I probably forgot because it wasn't fun.

So they broke it up into two days. The first day was super personal. I was asked about my family, friends, hobbies. We spoke at length about Ethans father and where he has been for the last...forever. Was it my fault he left? How did I feel about that?
Then we spoke about the twins and how we are co-dependent on each other. He even admitted it must be nice to have people to count on all the time. It's true. It is nice.
Then I was subjected to all kinds of tests, like putting numbers in order and similar. Some were funny. My favorite was when I had to think of as may words as I could starting with a certain letter. The first words every time were swear words. He was not amused. I have a pirate vocabulary.
The second day was a little harder. I was blindfolded and made to put shapes in there place on a board. I felt like a 3 year old.

At the end he told me it was apparent I had some brain function loss- that my intelligence has gone down a little since High School. So of course what I heard was "You are dumb". Then he told me my intelligence will continue to decline for the rest of my life. I heard: "You are going to get really really dumb". (Seriously- this is a side effect of Epilepsy. Brain function declines over time. This is another reason for surgery. The more seizures I have, the more it effects my brain. I need to fix my grey matter folks, it needs to stop.) I started thinking about all the things I wanted to do when I was younger. My dream was always to be a writer. I haven't written anything in ages. So of course I decided it's because I am dumb now. (Kidding, I'm kidding. I'm still super smart. Duh.) I would still like to be able to focus long enough to do something super cool like write though. (This blog post has taken me a couple days to write. I kept getting distracted with...you know...life or whatever)
So there's another thing- as my Epilepsy has gotten worse, my focus has also. I can't pay attention to things for long periods of time. Especially if it's something boring. I've tried college again and again. I can't stay on top of things and lose interest and can't pay attention so I quit. It makes me feel sort of useless, because what am I good for? *self loathing alert* I have recently been thinking about the future. What will I do with my life when Ethan is older? Will I ever be able to be an actual real member of society? Do I want to be? What am I going to be when I grow up? Do I want to get a real job? Career? *Self loathing, hate, bad bad*

ANYWAY, I spoke to my Neurologist and he let me know that he spoke to several Brain savvy people and as a group decided I needed MORE tests before they started cutting away at my brain. The reason is- even though we know which part of my brain my seizures originate- they can't find and pinpoint the actual spot. Temporal lobe is as much that has been deduced. So, even though I have had the MRI, CT Scan, PET scan, EEG, and etc, still my brain won't just give up the spot. The bastard.
WHAT DOES THIS MEAN!? It means I get more things! MORE SCARY MACHINES!! One of them is in California, at UCSF. Seriously, that's the closest one. So I have to figure out how to get there. Although my insurance covers the actual test, the travel is my problem. I'm working on that now.
THEN I have another test where I need to be hospitalized at OHSU. This one is more...well, uncomfortable. I get MORE radioactive fluid and can't leave the hospital until I have a seizure. So they will probably take me off of my meds and wait for the inevitable brain fit. Then they do whatever it is that they do. THEN they watch me for 24 hours, put me back on my meds. After that I can go home. Have I mentioned how hard it is to be away from the boys for more than 24 hours? Because it is. For all 4 of us.

HOW ARE YOU FEELING MIMI? I don't know. I'm ok. I haven't cried or freaked out or anything in awhile. I am on a fairly new medication and have been having some seizure activity. (No big ones, just absence seizures. Chill out) The new med makes me not hungry, which is apparently not a side effect. Maybe I'm just tired of my stupid diet. BUT, only 9 more lbs to lose until I get to a weight loss goal I made 2 years ago. So that's cool.

Question, if I made t-shirts- who would buy one? Like: "I support someone who is fighting Epilepsy" or something similar. I hate GoFundMe accounts. I feel that it's begging. I don't know. I just need to raise money to get to UCSF and there are people willing to help but that last sliver of pride I have is pushing against it. I don't like feeling like people feel sorry for me. Even when they say they don't. Even when they are awesome derby people who I love and admire. I have always kept my social life and Epilepsy as separate as possible. Lately the lines have blurred and crossed. It's something I need to get used to. Right? Right.

Right?
-Mimi

PET scan

Today's procedure wasn't bad.

For those who don't know, I'm having brain surgery. Epilepsy and all.

So last week I had my MRI. What a nightmare.
Today I had a PET Scan and a CT scan.

So a PET scan = Positron Emission Tomography. It's commonly used for cancer patients to image cancer tumors and stuff. It's also used for seizure patients to look for brain abnormalities and anything different. So, say, they found a scar or a spot on my brain, they would know then where exactly my seizures originate from. Last week's MRI came back normal so this was next. They will then take these images and the ones from the MRI to see if anything is different/abnormal/whatever.
With an MRI often people are dosed with a contrast. So the tech takes several images of the brain without contrast and then injects it and takes more images. To explain better, here's an actual doctor's explanation:


"MRI dyes work by altering the tissue's local magnetic field. Normal and abnormal tissue will respond differently to the slight alteration, giving doctors differing signals. These varied signals are transferred to the MRI images, allowing doctors to visualize many types of tissue abnormalities and disease processes. " -Thanks random health page.

Anyway, for a PET scan, what I had today, I was injected with a radioactive tracer. Awesome right? I'm radioactive now! Well, I was earlier. It's likely all out now. I didn't turn into a superhero or a ninja turtle. Bummed. *I did get a nap though.* (From here on, random thoughts and musings will be within *asterisks*. Because it's my Blog and I do what I want)




This is how it went:
Nuclear medicine is in the basement of the hospital. No sunlight. Just buzzing florescent lights and pale technicians. Good times. I went and checked in and then read People magazine. *Seriously, we have made some super STUPID people famous. We should stop* When called back the technician let me know I would be there for at LEAST 2 hours. *Dylan, who came with me, read like half a book. It was forever.*
He took me back to a room and started an IV line (ONLY TOOK ONE STICK!!) and then said he needed me to lie quietly and he would be back to inject the tracer. I could not read, or touch my phone, or talk or anything. In a dark room. For 25 minutes. So I took a nap.
He came back in, injected the tracer, which was in a scary metal tube thing so he wouldn't be exposed to it. It went directly into my IV line. He told me to lie quietly and he would be back in 45 minutes. *By this time I am bored and want a book or something. Nope* I lay there, bored. Listening to shoes squeaking on the floor outside the room. He brought in another patient and left her behind a curtain for her quiet time. I fell back asleep and woke myself snoring. *I was on my back sleeping. And I snore. Ain't no shame in my sleep game*
FINALLY he comes to get me, takes me to the bathroom, *finally* and takes me to the imaging room. It's a machine less scary than the MRI machine. Pretty open. Didn't fill me with utter fear. My head wasn't caged in. I didn't mind. You just lie down with your head in this cushioned holder thing and the bed rolls into the machine. Easy stuff. It's a CT machine also so it's two things in one. I was in there for 20 minutes and good to go. I was advised to stay away from pregnant women and to drink a lot of fluids to flush the tracer out.
If you are interested, here's the Wikipedia on PET scans: https://en.wikipedia.org/wiki/Positron_emission_tomography

WHY ARE WE DOING THIS? Because my doc needs to find out EXACTLY where my seizures originate from in my brain. We know it is in my left temporal lobe, but for the surgery to be a success they need to pinpoint exactly where. If my seizure center can't safely be removed because it is too close to my language center or something, then that's bad. That would mean different options would need to be discussed. We've discussed them before and discussed them. Partial Lobectomy is the thing that makes the most sense for me. My doctor agrees.

WHAT'S NEXT? I go see my Neurologist on Feb 12. We will go over the results of the MRI again, as well as the PET scan and the CT scan. From there we will decide when I will go on to Neuropsychology testing *Just wait, the things I have to do for THAT procedure actually makes me want to weep* THEN we can find a surgery date and this can all be over. Well, you know...

HOW ARE YOU FEELING MIMI? You know, right now, at this moment- I'm fine. I really am. What has been helping me is to look at it all clinically. To be unconnected. I took some photos of my brain today. That's cool. Brains are neat. I don't know if this approach will be good or bad. I guess I will figure it out.

Till next time
-Mimi


OH! Here's a super smart SHORT description on how a PET scan works. Because I am not a doctor and can't explain it totally well.

https://www.youtube.com/watch?v=GHLBcCv4rqk

MRI day

Today was MRI day, the first of many tests and procedures I have to go through before the surgery. The MRI is the easiest because it is the least invasive.
However, I am claustrophobic. Not terribly, but enough to get upset about being stuck in a narrow tube for 40 mins. I had to get the MRI with/without contrast. This means they take a series of images then pull me out and start an I.V.- inject a contrast dye, then stick me back in the machine for more images.
Seems routine. I've had several in my Epileptic lifetime. Shouldn't be too ridiculous right?

I took an Ativan prior, per doctors orders, so I wouldn't freak out and run away. (It only happened that ONE time).
Anyway, I checked in, filled out fun paperwork (Nope, haven't left the country recently. Nope, no pacemaker) and was called back way too fast. I was instructed to put on awesome hospital pants and gown and remove all of my piercings. Always a good time.
I was totally doing fine, then when I entered the room and saw the satan machine. That's when my heart got itself moving.

If you have never had an MRI or are curious, here's a video. The video was made for children. I got no headphones, I got no music. I got ear plugs and pillow things around my head to hold it still.








I was in there for the longest 25 minutes ever. EVERYTHING ON MY FACE WAS ITCHY. But in an MRI, you can't move, not at all. So I played episodes of Supernatural in my head. And went over my shopping list, and thought about world peace or whatever. I DID NOT think about Zombies and what if they happened while I was stuck in the machine. Nope, didn't think about that at all.
Maybe a little. Shut up. Dylan was in the waiting room, he said if Zombies happened that he would come in and get me out. So we had a plan.

After 25 mins of the loudest banging and knocking ever, they pulled me out to inject the dye. Here's where shit gets real.
I have super annoying veins. They are so tired of getting stabbed, so they hide. It takes someone with some skill to draw blood or start an IV. I was still stuck in the head helmet thing and just like, there. I was told several times not to move. EVERYTHING WAS ITCHY.
The MRI tech couldn't find a vein. I directed her to the back of my hand. She couldn't see anything. So she called in Jeff, another tech. He couldn't find anything after tying and retying several parts of my arm. So they sent in tech #3. He found a vein! In my right arm. Things are moving right along. He starts the IV and starts injecting the dye. It hurt. My whole arm got hot, then cold. I started moving and he told me to keep my head still. I told him it was hurting and he looked down and said: "Whoops, blew that vein out"
WHOOPS. WHAT.
He taped it. I told him I was allergic to some of the tape and he wrapped my arms in heating pads and left.
You guys still with me? Remember, I am still laying on the MRI table with my head trapped in the ugliest helmet ever.
Time went by and Tech #1 comes in and tells me we are waiting for the lead Phlebotomist to help. OK. Moore time goes by and Tech #1 comes back and says she is going to try and start the IV. She stabs me once and I swear that was the longest needle I have ever felt. She finds nothing, bandages it. Then thinks she sees something and tries again. Inserts the needle and DIGS AROUND. I kicked straight out. I mean, WTF lady. I would have kicked HER if I could see her. She apologized. Once. Bandaged and walked out. Now I am worried they are going to leave me here forever and use me as a pincushion.
Several minutes later the Phlebotomist gets there. She picks up and arm, makes a mmhhhmm noise, sticks the needle in, tapes it to my arm and walks away. Done. Just like that. Tech #1 comes in and injects the rest of the contrast, puts me back in the tube and leaves. The fun noises start again and I just sort of lay there, thinking about how bad my arms hurt.
I was glad to leave.

Good Times.



















That's my MRI story. MRI's suck.
Next week I have a PET scan. I'll let you know how it goes.

-Mimi