“Being challenged in life is inevitable, being defeated is optional.” ― Roger Crawford

Epilepsy, you guys... It's kicking my ass. I mean, let's be real about it. 

I miss driving. I miss having a job. I miss being onstage (community theater was SO MUCH fun). I just miss being an independent adult. 

Do you know what else I miss? My kids saying "Remember when...?" And I REMEMBERED what they were talking about. And now I just stare at them, confused, and I have to tell them that I don't remember. It's so weird. 

In November, I had my Video EEG... because I haven't had enough of those. And then I had those "Koko the Gorilla Tests" as I call them, which is just an obnoxious amount of puzzles and questions and just, the worst. But they got whatever they needed. 

And then in March, I had super invasive surgery to test my seizure patterns and I was stuck in the hospital for ten days- no visitors allowed, because the world was officially upside down.

And then I came home and now we all have to stay home (which I'm used to anyway) so I sit here... trying to figure out what to do with my new everything. We have this beautiful new house. And the kids are going to these AMAZING new schools.(Well, they are sort of going to them.)

I love my neighborhood, the town we are in, the people we live near, the...everything. And I can't do anything. I can't drive around and explore. I can't do much of anything- not on my own. And whenever I start to feel really down about epilepsy kicking my ass, I realize that epilepsy is kind of the reason I have this awesome house and that I'm here. And it's so weird that this stupid struggle brought me closer to my amazing husband- it's rare that when you're just dating someone and you have a crazy seizure that they're like "Single mom diagnosed with epilepsy? Challenge accepted."- but he's amazing. And had epilepsy not prevented me from driving and made it so I had to give up the catering job I had, I wouldn't have ended up at Naughty Oak where I made so many great friends (who feel like family) and met such wonderful people. And as much as I hate this stupid disability (because that's actually what it is even though I hate saying that), I look at myself and realize how lucky I am that my support system is SO SO amazing. 

Sometimes though... Sometimes epilepsy just sucks. And that's really all there is to it. Sometimes, I find myself on days like today... talking in circles. I'm currently only 4 days seizure free (there was no coffee involved!), but we are trying to get the neuropace approved- my dr is trying to convince whoever "they" are that it is not elective (they aren't scheduling any elective surgeries because of the Coronavirus) and we should be able to schedule it once my brain is healed from the other surgery- which he thinks will be June... I feel like it will be never.  

While I definitely hate these damn seizures and everything that epilepsy is doing to me physically, I try to keep believing that it's making me a stronger person emotionally. I get shocked whenever I look in the mirror and see that my hair is gone, or coming out of the seizures when I go to touch my head and feel that my hair is gone- I think as trained cosmetologist, being bald is kind of a shock when you forget, but I'm trying to be ok with it. 

One day, I will be able to read this quote again and go "Hell yes. Epilepsy challenged me and I didn't let it defeat me". And that's all I want. 

A Mistake Repeated More Than Once Is A Decision...

Working off of that quote, I can only conclude that "Seizure Katie" has DECIDED she likes me to wear my coffee. I mean... what is the deal? She clearly didn't find it to be a mistake the second time, I have witnesses and they said it looked pretty much like she knew what she was doing. 

So, going off of that, what the hell, Seizure Katie?! 

Yesterday was a normal morning. Randy and I were having coffee, 
we were watching Brody play with the dogs, Quinn was trying to get us to give her some coffee. And then my aura started. I looked at Randy and I said "Oh no" (or maybe I said "Oh shit") and then I don't remember anything until I was up in my closet being told to change out of my pajamas because I was covered in coffee. So, I was defeated for the rest of the morning. 

By mid-afternoon, I was feeling better about it. Sometimes I get to the point where I just want to laugh about it instead of feeling defeated and knew I could rely on Brody for that. So I asked him for his POV of the seizure and the situation. He said "Mom... This one was weird. I was playing on the floor, right? I had the dogs and dog toy and we were playing. And then all of sudden, Randy said "Brody! Get her cup, get her cup!" And I didn't know what he meant at first, and then I realized he meant your cup and I turned around just in time to see you just... And he mimicked what my space out face looks like (or what I'm told my space out face looks like) so well, and then showed me the way my hand just sort of tipped my coffee cup over. "And Mom! You just.... dumped your coffee out. You just stared at nothing and poured your coffee out and didn't even care. What if it had still been hot?! Oh man Mom... You're so lucky it wasn't hot. And I am sorry I am kind of giggling but you should have seen your face." and it's ok, because I was kind of giggling too.  And then he told me about how I sort of, did a repetitive motion with my fingers and created a pattern with them once Randy took my coffee cup away- which is totally normal for my seizures. The coffee thing is new, but the repetitive motions is not.  I knew getting an 11 year olds take on things would make it a little easier to deal with. (Just a little though.) 

I also had a moment this morning when I was approached by a friend- she's wondering if I have advice for someone she knows who is going to be getting surgery for epilepsy. And I would like to say that I can't believe that's another person that I know who knows someone or just another person that I know... but 1 in 26 people will develop epilepsy in their lifetime. I feel like I need to throw that out there every once in a while in case someone didn't see that before. Counting me, there are 7 people I can name right now that either have it or someone close to them does and that is crazy- not NEARLY enough is done or known about epilepsy. There is still a huge stigma, people are still stupid and making jokes, and I hope there is more awareness soon. 
1 in 26.

It's no use crying over spilt milk... But maybe coffee

On Sunday, I spilled coffee all over myself. And I don't even know how or when I did it. That's the joy of seizures- of my kind of seizures, you lose track of time and space out for a minute and have no idea what the hell just happened. So on Sunday, I was the first one awake, I made the coffee like I was always do and I had myself a cup. I was sitting on my favorite chair, looking out the window, watching the rain- I think, I honestly don't remember what I was doing, but I think I was watching whatever was happening outside, I may have been watching my dogs play on the carpet, who knows? And then all of a sudden, I was leaving the bathroom. And I saw my coffee mug sitting on the counter, empty, and I thought "Wow, that's weird, I finished it already?" and so I filled it up again. And I sat back down on my favorite chair and that's when I noticed my shirt was wet. Confused, I thought for a minute I got my shirt wet in the bathroom, then I panicked thinking it dipped into the toilet since the shirt is long and I was tired. Then I started to add everything together... Wet shirt, empty coffee cup, no idea how coffee cup was really empty, or how I ended up walking back from the bathroom- I mean, had I actually USED the restroom, or was I just walking back from that area? Damn. 
And I had just had two on Friday. Cool. 
I looked around. Coffee all over the chair, all over the carpet, and after a better investigation, all over me. I walked to the kitchen. I - NO WAIT- Seizure Katie, had also started to pack a school lunch for my son, which is just so dumb because A) he was with his dad, and B) It was Sunday. So Seizure Katie was up to all sorts of shenanigans, spilling coffee all over the place, packing lunches for no reason, just keeping me on my toes. 
My husband was still asleep. I was just sitting here trying to figure out if I wanted to laugh or cry. I finally decided that the best option was to have more coffee, wait until my husband was awake to change my clothes and to hold it all in. When he woke up, he told me I was ridiculous for sitting there in wet pajamas but he had been sick all week and was finally getting sleep so I didn't want to disturb him. I focused my energy on cleaning the chair and the carpet instead. 
On Monday, I had a million errands I wanted to run but couldn't because I can't drive. And several appointments I needed to make but I can't actually make them because I have to make sure they work around other peoples schedules because they are the ones that drive me places otherwise I have to Uber and Ubering to doctor appointments is weird- trust me, I've done it. A lot.
And that's when it happened. That's when I started to cry and get angry because I spilled my coffee. Isn't it funny and SO STUPID how that all works? The whole "Straw that broke the camels back" thing? 
I meet with the neurosurgeon soon and I'm getting a million more tests and maybe I'm on my way to having this crap behind me.  January 27th, we find out what he has to say and on February 6th I go in for the Neuropsych exam and functional MRI- which is just my favorite (I bet you can feel my eyes rolling through your screen) and then hopefully we will know if I am a candidate for RNS procedure or not. 
Once upon time, I was an independent woman who drove herself to the grocery store, and took her kids to school, and drove herself to WORK... and someday that will be me again... As soon as I figure out how to drink coffee without spilling it all over myself.