July 2016

I am going to start at the beginning... Or what we think of as the beginning to try and make sense of everything. And then I'll jump back in the timeline as I see fit but for now, we will go back to July 2015.
My little sister was getting married and we were preparing for her bachelorette "party"- why the quotes? If you know my sister, you know she was worn out from moving and from wedding planning and from studying and from life around this time. The weekend was going to consist of mani/pedis and drinking wine and relaxing around the pool. We weren't going Vegas crazy and drinking our asses off. We were just going to chill and enjoy doing nothing.
Thursday (and probably Wednesday) I had been complaining of a headache... and I could tell it was leading to a migraine. I kept telling myself I didn't have time for that crap. Friday I had to drive down for the party. "No time for migraines body! Knock that stuff off!" and I popped some excedrin or whatever and just kept on going. I felt a little better on Friday, I checked into work, said my goodbyes for the weekend and was on my way.
I stopped by my favorite winery, said hello to my friends, picked up some wine for sister and took off for a nice weekend. Friday night was supposed to be my sister, her friend Monica and me. We were going to have dinner and a little sleepover and meet everyone else on Saturday morning. After dinner, we opened wine and sat around, talking. We only poured maybe 2 ounces of the wine in each glass- I used to work in a tasting room, it's a hard habit to break. And I was on the floor petting Samantha's dog, surrounded by moving boxes- she was still unpacking from the move back to California from Virginia... And then, I woke up in ambulance.
There was a guy standing over me... or leaning over me... whatever the EMTs do, and he was saying my name and asking me if I was with them. And I responded. And he said "You had a seizure" and I looked at him like he was a complete idiot and I said "but that's stupid, I'm not epileptic" and then apparently I passed out again because the next thing I remember, I was being wheeled into the ER and there were Samantha and Monica. My poor baby sister. Boy do I know how to ruin a weekend, right? Instead of relaxing by a pool, we got to go to the hospital!
My sister spent the night answering questions, calling our parents, my best friend, my ex-husband (who had my kids) and my boyfriend, Randy- who was in Vegas watching his niece in a pageant. The doctors did several x-rays on me because of the complaints I had (my shoulder and ribs hurt), and checked out my brain because duh, I just had a seizure.
I honestly don't remember what happened at that point. I don't remember if my parents met us at the ER or if the doctors tried to send us home or what happened. But I know my parents arrived in Anaheim at some point. I was out of it. That's the thing about seizures...  It takes you a while to come to even after you "come to". They suck. And then, I was home.
And my boyfriend was here. And my friend called to check on me. And my kids arrived. And things happened but they were all a blur. It was all very strange. Slowly, as my body began to heal from the "holy shit every muscle hurts" I realized I definitely injured my shoulder, my ankle and my wrist. My sister explained that was because of the way I flew into the door, twisted my leg in-between some moving boxes, and sort of flung my arm behind me. OK. Makes sense.
As my body healed and we found a doctor, we learned some fun things. 
1- my license was officially flagged (which they had mentioned in the ER but due to the chaos it didn't really sink in), so I wasn't allowed to drive for at least 6 months. If I went seizure free for 6 months, I could have it back after an interview with a DMV employee and if my doctor deemed it safe.
2- the type of seizure I had was called a grand-mal seizure, one of the MANY kinds of seizures I would come to know about, 
3- that the migraines I developed in my teens, the few fainting spells I had in my late teens and early 20's, and what I had been told were anxiety attacks in my mid 20's were all most likely a different kind of seizure or even pre-cursors to having seizures. And maybe, when I was spacing out in school, and we all thought I was "Just being Katie", I was having seizures...  Because there are so many kinds of seizures, and people- even doctors- don't really understand epilepsy, I was misdiagnosed, over and over- with migraines, with PMS, with anxiety attacks... And even the doctor that told me all of this misdiagnosed me with the wrong kind of seizures.
I was actually told, by the first doctor I saw for all of this, "Don't tell anyone you had a seizure. They'll look at you funny and treat you sort of like a leper. So it's best not to say anything and just keep it to yourself."And I did that at first. I told friends and family. I mentioned the event so people knew when they saw me out and about, limping and in a wrist brace, because I didn't want them to think my boyfriend was abusive or something ridiculous but then I left it alone.
I didn't tell them that I was still having small seizures. I wasn't still experiencing grand-mal seizures, sure, but I was having what was initially diagnosed as "absence seizures"- which I'm told now was totally off base. Absence seizures are usually seen in young children and are usually just a few seconds long. If my doctor had been listening to me and he had cared to actually ask the appropriate questions, he would have known that those were not the kind of seizures I was having. But, I was diagnosed with absence seizures, given meds and sent on my way. And when those meds didn't work, and I kept having seizures, he gave me more meds, or upped the dose, or gave me stronger ones, and they would work for a while...and then they didn't. Or they would work on the seizures but the side effects were horrible. And when you're a raging bitch to everyone around you, and no one wants to talk to you, maybe that's not the best medicine for you when you're dealing with this new illness that leaves you depressed half off the time.
After my 6 months was up, I received noticed from the DMV that it was time to go have an interview and if my doctor said it was safe for me to drive, I needed to have him fill out the papers and they would schedule an interview for me. If my doctor didn't think it was safe for me to drive, he needed to fill out the other papers, and my license would be suspended for a year. When a person is dealing with seizures (even though a doctor hasn't yet diagnosed them with epilepsy) adding that kind of stress to their life, is NOT cool, DMV.... anyway.... I have my interview. It goes well. The guy says I have my wits about me, the doctor says I'm good to go, he takes the flag off of my license (which turns out was never actually flagged in the first place, which he is super embarrassed about) and then I go see my doctor. He recommends I avoid freeways and stick to a 5 mile radius of my house. OK. That's cool. I can get to Target, work, the kids' school, to their dad's house, and to everywhere I deem important in that radius. Not a problem.
Then one day... I'm driving home from a lunch date with my daughter. We went to Target and to lunch as per our usual midweek errand run. And during our drive home, I felt what I now know is an "aura" but what I was told years ago was a panic attack. My heart starts to beat quickly. I feel a knot in the pit of my stomach. Then it gets very hard to breathe. And my head will get fuzzy. And then the seizures come. And these particular seizures vary. They vary in name. They vary in symptoms and in behaviors. Sometimes I look like I'm aware of what I'm doing. Sometimes, I cry. Sometimes, I stare at nothing, and I click my tongue, and I twitch my hand a little bit and do repetitive motions. Sometimes, and these in my opinion, from my point of view, are the worst ones, I know what's going on around me and I know that people are talking to me and I know that people are trying to get me to "snap out of it" and I can hear the questions and I can see their worry but it's like I'm trapped in my own head- I hear my brain say "ANSWER THEM!" but my mouth is like "nah, it's cool" and my body just stays there, frozen, not cooperating with what my brain is telling it to do.
During this particular aura, on this drive home from Target, I felt all of those things. First came the quick heartbeat and I thought, "Oh no! Not right now. Not while I'm driving. I have my baby in the car. How many other people have their babies in their cars?" And I realized I was very close to being home. And I just needed to pull over and I could call Randy or call my mom or call someone to come get us and we would be ok. And then came the knot and the breathing...  And the traffic wasn't allowing me to pull over- and it was moving too quickly for me to just stop or to even slow down too much. I needed to get over to the right lane and to the shoulder. And then, DAMN! I was passing the area where it would be safe to pull over.  And I kept looking for a new place to pull over... And then the fuzzy head feeling started and I was trying to fight it off.
And then... And then... I was home?
And not because I managed to pull over and call Randy. And not because I got in an accident and an ambulance or cop or something was called- THANK GOD. But because I went into some sort of seizure, I'm assuming the weird one where it appears that I know what I'm doing, and I somehow got us home.
I pulled into the driveway terrified and relieved to see my house. I walked in and gave the keys to Randy. I told him I am done driving. As much as I couldn't wait to drive again, I couldn't BELIEVE that my doctor decided I was safe to drive when I clearly wasn't.
I belong to many online support groups and people are always asking about getting their licenses back and I keep telling them to wait. It's not worth it. OH MY GOD- WAIT.
I don't know who was watching over us that day, but we made it home. And I'm not driving again until I'm 6 months seizure free of ALL seizures.
I'm normally a pretty private person when it comes to personal and emotional things like this but I am currently in a battle with epilepsy and I can't let that bitch win. Part of the battle is bringing awareness. I'm learning so much about all of this and I know I'm still clueless as a person with epilepsy. But we shouldn't be told NOT to tell people we have seizures. Fuck that. It's not contagious. You aren't going to catch my seizure. We need to be able to tell you so you know how to help us. All of my coworkers have been amazing. My bosses are supportive and my crew all know what to do if I have a seizure. I have my MedAlert bracelet. I want to start talking about it so people know what to do.
So here I am.
Blogging my story in bits and pieces.
Today I'm 20 days seizure free.
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-first-aid