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I just went potty unsupervised

So yeah, this hasn't been the insightful, inspiring blog I hoped it would be, but that's okay. I am home. I'm in MY bed, with my sweet puppy who I missed so much. Most importantly, I finally got to poop all by myself. Don't take that for granted, people. CHERISH IT. And being able to scratch your head. And move your body without tangling up a bunch of wires. And feel the sun on your skin. If the experience gave me anything, it was deeper appreciation for how hard it must be for people confined to a bed or wheelchair long term.

btw, remember how cute I looked in that fist picture? Here's me last night:

Yeah, that's why I ended up not taking a whole lot of pictures. But I did tweet some good "foodie" pics over at @beppy, hashtag "hospitalfood."

After all that, I never did have a seizure for them. Watch me have one tonight. It's kind of hard not to feel just a little bit like a failure. Steve has reassured me that I did everything I possibly could to induce one - staying up all night, chugging energy drinks, watching those awful strobe lights. In the end, I'm just going to stay on the Tegretol and hope it keeps working. I don't see my neuro again until January.

I want to thank my husband for being amazing, even when I was super cranky, my parents for coming by to keep me company, and the awesome staff at KU Med for re-gluing my electrodes, taking my vitals, making me laugh, and yes, helping me poop. None of you guys get paid enough for all that you do.

I guess that about wraps it up, kids. I might keep this blog around for other epilepsy related stuff because the name is so damn clever. We got awareness month coming up in November. Until next time, be excellent to each other, and GO ROYALS.

Huzzah!

I get to go home tomorrow regardless of whether I seize or not! Still hoping to give them some activity, but they say about 25% of people don't seize while they're in here, and a lot of it has to do with the fact that we're sedentary - most of my seizures have been after moving around and getting my heart rate up somehow. Chugging energy drinks to try to mimic that effect. But I was starting to get really cranky and really sick of it here, so this makes me very happy.

MY HEAD ITCHES

WHY ARE YOU SWINGING AT EVERYTHING

But seriously, got the machine fixed a while ago I did get to talk to my doctor finally, and I feel a lot better. Here's what we know now as a result of the data they've collected: my seizures are definitely epileptic as opposed to non-epileptic. The "irritation" they've seen on my right parietal and temporal lobes is prove enough of that even if I haven't had an event. Since the Tegretol has been working well for me, my doctor has given me the option of going home pretty much whenever I feel like it. "Don't feel like you're chained here," she said. That made me feel so much better because that's exactly how I felt. We decided to give it at least one more night to see if I can give them at least one seizure, but she's going to check with me daily and see if I feel like I can stick it out for another day.

In other news WTF ROYALS?!? 0-4 bases loaded in the top of the 4th. Taking Shields out doesn't seemed to have helped. You guys just keep on swinging at every damn thing comes your way, maybe I'll have that seizure tonight after all.

24 hours in . . .

. . . and still no seizure activity. At the very least I got to use the bathroom all by myself. I've been awake the entire time. Usually that alone is enough to trigger an event, but I've heard the vEEG rooms referred to as the "seizure prevention unit" because people tend to quit having them as soon as they show up here. So that's comforting.

Oh, and I was just notified that the little machine that's supposed to be doing all the monitoring has been broken since I dropped it trying to go to the bathroom using just my right (WRONG) hand, so there's really no point in me being here whatsoever. Awesome. I wonder if they're gonna charge me for it. So far this experience has been SO eye opening and everyone has been SUPER forthcoming about what exactly they're even doing. I TOTALLY don't feel like the lone child in a world run by grown-ups who are all in on some joke I'm not getting.

/s

So I just went to take my first "escorted" restroom trip . . .

. . . and the lady I buzzed was a different lady than the one who told me I'd have to make in front of people. She stood just outside the door, but the operative word there is OUTSIDE. I am now suspicious of everything the first lady told me. And starting to get a headache I can't take anything for.

And they just made me take a Tegratol for some reason . . .

I couldn't even stick it under my tongue and fake taking it cuz they've got this fucking camera watching me. WHY WHY WHY did they make me take that just now??? I tried to tell them, look, I'm here to have seizures, and nurse lady was like "well let me go ask," and she came back and said the doctor WANTED me to take it. That is going to put off my first seizure until AT LEAST tomorrow, if not Wednesday. Because, you know, I want to be in here getting escorted to poop for as long as fucking possible. I am legit angry. That's fine, just fine, assholes. You know what that means? It means the house music's coming back on, the caffeine's gonna keep flowing, I'm gonna start watching a whole bunch of "screamer" flash videos, and if I'm awake at 4 in the morning (which I will be), you get to take me to the bathroom. My lunch btw:

And the kitchen closes at 6:30. Um, this is hospital, not a fucking nursing home. Something tells me I'm gonna be sending Steve to get me shakes tonight.

Day 1 - And Now We Play the Waiting Game

Hey everybuddy! Welcome to my vEEG blog, where I spout nonsense from a hospital bed because I'm only allowed to get up to use the potty and Im gonna be SUPER bored. So I've got all the electrodes in place and a camera watching me. Didn't take my Tegratol this morning and I'm assuming I won't be getting it tonight, or for the duration of this study. It's kind of like Opposite Day for 3-7 days. They'll be doing everything in their power to make sure I DO have seizures, and after they get 2-5 "good" ones, they'll unhook me and I can go home and probably sleep nonstop for a few days. I want this to be over and done with as soon as possible - seizures are physically painful and incredibly mentally taxing, and they usually come out of nowhere. I'll be minding me own business and next thing I'm lying on the floor being told I just had one. It's really weird knowing I'm about to have a whole bunch in a row. I'm not gonna lie, I've been kind of terrified the past few days. I feel better now that I'm here in my comfy bed and I've gotten to know the staff. Everyone here is really cool. My only previous hospital visits (since having a pesky cyst taken off my ovary when I was 14) have been to the ER, and lemme tell ya, being legit admitted is WAY nicer. Like, 1 star hotel vs 4 star hotel. I had to go to this hospital's ER once for a really bad migraine I got at like 3 in the morning, and the waiting room has bullet proof windows and a metal detector, and the woman in front of me was OBVIOUSLY tweaking.

The shittiest thing - pun intended - about being in here (besides the whole having a bunch of seizures thing) is that as a "fall risk," someone has to come with me to the bathroom EVERY TIME. Folks, I have always had a shy bladder/sphincter. I was a grown ass adult before I could even get myself to go #1 in public restrooms, and it has to be, like, a potty emergency for me to go #2 somewhere besides my special bathroom. Now you're telling me I have to do it while a stranger watches me?!? I don't give a shit whether it's a female nurse, that doesn't comfort me any more. I even asked if I could have Steve take me, but no, it HAS to be someone who works here. They also will not let me leave the hospital until I have made special poop for them, so just holding it for a week isn't an option either. Aaaaanyway, I'm just gonna be here sipping Dr. Pepper and blasting house music until they get some seizure activity out of me. At some point they're gonna come in with the strobe lights, but those have never induced a seizure in me before. The only things that I know of as triggers so far are not taking my meds and not sleeping, so I doubt they'll get anything until at least tomorrow morning. They usually happen in the mornings, too.

So tonight is gonna be SO FUCKING BORING. Look for me to be texting/facebooking/redditing/ Internetting up a storm while I'm in here. Where are my Korean and Australian friends at? Well, Korea and Australia, respectively, but you'll be awake when I am! To cut into the boredom some, I'm going to be doing my own monitoring of the little brain wave machine attached to the camera. I want to see what it does when I catch a really rare Pokémon (playr.org has all the old Gameboy games for free on flash, just in case you were getting anything done at your office job) or the Royals make a really good play, and conversely if that Pokémon gets away from me at the last second or the Royals do something stupid. Yes, I will have cable, and apparently my jinx phase is over because I watched the last three games and we seemed to do okay!