Epilepsy Owes My Brain Rent

I read that a few days ago and it cracked me up... but it's so true. Epilepsy is taking up A LOT of space in there and it's not even sorry. 

I'm not even sure where to begin, there is so much to say. 

At the end of July, I had testing done at Stanford. Major testing. I had to stay there "anywhere from 3 to 10 days".... which is just what a mother of two wants to hear. They hooked me up to a million wires- or it felt that way anyway- and I was basically hooked up to the wall. There were cameras on me at all times, I couldn't get out of bed without letting the nurses know, they stood outside of the bathroom (in case something happened), and I had a GIANT trail of wires from the wall into the bathroom and a purse of wires I had to carry (see photo) and my head weighed like 500 pounds (an exaggeration, sure, but I don't feel like it's that much of one), and I had to just stay there...  I could bring my computer, I had a TV, my mom and Randy kept me company, but there wasn't much to do... it was boring. It was depressing. It was emotional. Thank you snapchat for fun filters. 
They took me off of my medicine pretty much immediately to see what sort of activity happens when I'm not on the medicine... and pretty much immediately, I had a seizure. And they tried all sorts of fun tricks to try and make me have seizures- strobe lights, sleep deprivation, hyperventilation, etc. It was super great. (Can you feel the sarcasm through your screen?) It was exhausting and horrible and it made my body hurt. 
BUT we learned that my seizures are coming from the right temporal lobe, I occasionally have seizures in my sleep, sometimes I have seizures so small I'm not even aware that I'm having them but they registered on the machine, and loads of other fun stuff. The doctors there decided that a 5 day stay was long enough- and THANK GOODNESS. I had Cabin Fever by Day 2. 
My doctors were very excited and said it looked like I was a great candidate for surgery. They explained that there were a few more tests I would have to have done to determine everything and then they would have to present my case in front of a board of epilepsy specialists and neurologists and then once all of that was done, we would know if surgery was the thing to do. 

Fast forward to September.... 

September 14th, I had a PET scan. I had to fast for 5 hours and then they injected a glucose solution into my arm to see what happened and how my brain dealt with that. Fun fact: I am claustrophobic. They let me take an anti-anxiety pill so I was nice and relaxed and sleepy. And right when I was starting to become aware of the fact that I was in a giant tube, the test was over. 
September 15th, I had a functional MRI. This is an MRI that requires you to "play along" as one of the techs put it. They have you do things like "Move the fingers on your right hand", and you have to move them a certain way- but without moving the rest of your arm, because if you move too much, you'll "move your brain" as the video said, and that will result in blurry images. Or they might show you a picture of a comb and you have to think the word "comb" and think of what you use a comb for. Or it will show you a police car and say "Think of the sound a police car makes" and you're supposed to think of the word "siren" and you're like me and you think "Weeeeeoooooweeeeoooooweeeoooo.... oh shit! NO! Shit! Siren. They want siren! Oh my god. I'm a spaz. Siren!" And then you have to hold off the giggle attack that's about to happen.
During this MRI, I was not allowed to take the anti-anxiety pill, but I was told that they would keep me distracted so I wouldn't need it, but they needed me alert. And you know what? It ALMOST worked... At the end of the test, Bob the technician said "OK, Katie, now I just need to take images, your part in this is over. Just relax. This first set is going to be about six minutes, then about a minute an a half, then about four minutes, then I have to review everything before I can let you go, ok?" And then I felt my body slide up into the tube a little bit more... And the mirror I had been viewing all of the pictures in that was allowing me to feel like I was not in a tiny tube was no longer viewing the outside of anything and was just looking at my feet, and the tube smashed in around my elbows... and there we go. It's OK though, I only cried a little a bit and then the test was over. lol 
The thing with the functional MRI, it lit up the areas of my brain that responded to whatever I was supposed to be doing. And it told the doctors which part of my brain was responsible for language and whatever else they were looking for. 

September 18th, I met with my neurologist to go over the July visit, the PET scan, and the functional MRI. She said we know the left side of the brain is responsible for language (which is true for most people but we needed to make sure), that the seizures are definitely coming from the right temporal lobe, there seems to be activity there kind of all of the time even when there isn't a seizure and that there is a little bit of activity happening on the left side as well- but she didn't seem really worried about that but we needed to double check that. 
She says she is confident we will be able to get me off of my medication with one of three options, but each one sounds just as crazy and scary as the next. 
If there is too much activity coming from the left, then I would need to get a implant- this implant would basically shut down any activity as it's happening. The minute my brain starts firing up, the implant would be like "No way!" and stop it. And this would allow the doctors to monitor it and see what's going on and where it's coming from as well. 
If it's all just from the right side, I have two options- 
There is the laser option, which just kind of zaps the spots where the seizures are coming from and stops them and there you go. But it's a newer option and there's not a lot of data on the long term effectiveness. It's a short recovery period, but who knows if the seizures will come back in like 5-10 years?
And then there is the big surgery where they go in and they say "This is where the seizures are coming from" and they take that part of my brain out. And that is why they needed to know where my language was coming from. They needed to make sure they wouldn't be damaging anything if they went in there and took something out. And yes, that's scary. It's terrifying. And the recovery period is longer. But people have a high success rate with it. And they go seizure free for the rest of their lives with this surgery. And that sounds awesome. 
And I know- "Take out a part of your brain?!" I know! .... But guys... Seizures are more serious than a lot of people realize or understand. Yes, I can get seriously hurt while having one, but it's not just that. There are a lot dangers people don't realize are associated with seizures. And I would rather risk taking out part of my brain.

I was scheduled for a neuropsych exam on October 17th, which was the final test to see which surgery option was going to work the best for me, but it was moved to September 25th. This is a series of brain teasers basically, and I'm told this is going to help them figure out where my memories are stored, how other parts of my brain work and if anything else could be damaged if they do surgery. 
My short term memory is already messed up and that's because of where my seizures are coming from. My doctor explained that the right temporal lobe is where short term memory is stored, and that's why I can't remember anything, it's probably when my brain is having activity that I am struggling to remember something. 

I also found out that my auras- the precursors to my seizures- count as seizures. So all of the times I thought, "Oh that was just an aura, it didn't turn into a seizure", she said it counts as a seizure... so that's disappointing. 

Two days ago, Randy came into the living room where I was watching TV, for some reason he decided to check on me. And apparently I told him I wasn't feeling well. He took me to the bedroom to lay down. And thank goodness he did. I had, what he described as a "pretty bad" seizure. My body hurt, a lot. And I was on the bed... surrounded by pillows and soft things. I can't imagine what would have happened if I had been alone in the living room, in the rocking chair that I am sure I would have fallen out of, next to the table I probably would have smacked my head on. It's been two days and I finally feel normal again. Or as normal as I can, all things considered. 

Today I am ending the blog with this note: I started this blog not just so I could try make sense of all of this in my head, but so I could try to bring some Epilepsy Awareness.... even if it's just to like five friends... If you read this and now you are made more aware of different seizure types, I feel like I did something, you know? People don't realize there's more to epilepsy than just falling on the floor and convulsing. 
Ask your friend who looks like they're daydreaming if they're OK... maybe they're not daydreaming. 
Ask your child who is getting in trouble at school for not paying attention... maybe it's not ADD or whatever the teachers want to label them with...
Your klutzy friend who also has bad migraines? Maybe it's something else and she has crappy doctors. 

While blogging, I unfortunately had a complex partial seizure.... so another day, another seizure. The count is at zero, but I can't wait until the day I can say "I can't remember the last time I had a seizure".

I blog to sort it out. I blog to bring awareness. Katie VS Epilepsy. I'm determined to win this battle. 

 Looking lovely in head wraps in July.....

 My purse full of wires

“The world breaks everyone and afterward many are strong at the broken places.”

In this case, the world broke my brain.
And in turn, broke me... And now I'm trying to be strong again. I'm not there yet, but damn, I love me some Hemingway.
I think it's fair to say anyone who knows me would describe me as an optimist. I have often been described as "sunshine", or "bubbly", or my favorite "rainbows and butterflies"....  I am a happy person. I am annoyingly happy. I am one of those people that draw in other people because I have that sort of energy. I'm not saying this to brag or to ... whatever... I'm saying this because other people have said it about me.
When I was going through my divorce, and I didn't understand why my ex-husband wouldn't let me help him through his depression... and why I seemed to draw in people with depression- my best friend has it, most of my closest friends have it actually, and now my ex, and just so many people close to me have it, and I watched SO many people in high school go through this battle... and I felt like I would meet these people and they would come to me and it was almost the first thing out of their mouth.
"Hi, I'm Katie, nice to meet you."
"Hi, I have depression. Can you fix it?"
And I know that's not how it actually happened but sometimes it felt that way.
And my friend, she looked at me, and she said, "Of course they did that. Look at you. They saw you and your happiness and your light and they wanted to suck the happiness from your rainbow. They wanted a hit of whatever you had going on."
And I never thought of it that way... but it TOTALLY made sense once she said it that way.

So let's jump into my timeline after I've stopped driving and things are rocky in the seizure world...  I'm trying to figure out life. I can't drive. I've two kids in school, one who gets out at 11:20, one who gets out at 2:15 (except on Wednesday when he's out at 1), both play sports, both are busy... And I can't drive. I can't do anything. So it's up to their soon to be stepdad, their dad, and the grandparents. And they are all AMAZING. They're shifting lunch breaks and meetings and days off and everything around and doing so many things to help and I'm just... here. Feeling useless. And helpless.
Not only can I not drive but it's dangerous for me to take a shower without supervision because if I have a seizure when I'm in there, I can get seriously injured, or drown- so I have to have someone in the bathroom with me. Or I have to have the door open. I use to LOVE to take a long bubble bath at the end of the day.... Not anymore. Can't do that. No more reading in the bath... So I hardly read anymore. It's weird how that's just kind of gone- I can't find a good place to read now- that was where I got privacy and was left alone. And I don't get that now. I am not left to relax anymore.
So my parents and my fiancé are dealing with shuttling my kids around and dealing with me slipping into and out of these weird seizures that we were told were absence seizures but now were are told may be something else and I'm given a new medicine. And I'm getting depressed. And my "light" is fading....
It's been far too long of dealing with this. My mom finds a doctor at Stanford who specializes in epilepsy. Not just that, but in WOMEN with epilepsy... and women who have thyroid disorders.. and we send her my information. And she agrees to see me. And it's amazing. And we are so excited. And she will see me after my wedding. Perfect.
Jump to April.
I'm getting married on April 29.
The Tuesday before the wedding, my dad and I head down to LAX to pick up my cousin and my uncle who flew in from Indiana for the wedding. We brought them back up to Santa Maria and we were having a great time visiting and talking and catching up.
I went into the living room to talk to my son. He was in a rocking chair and had a blanket on... I was telling him it was time to do homework, so I took his blanket off. He grabbed it, but I still had one end. We had a little tug-of-war going on, and he was rocking in the chair, and we went back and forth, just teasing each other. And as we discussed homework and how he didn't want to do it and how he'd much rather have a happy meal, and could I please take him to McDonald's, I laughed and said "Mommy can't take you anywhere, you know I can't drive."
He smiled and said "Oh yeah, why aren't you driving again?"
I said "My brain is still broken."
And right on cue, I felt an aura. I looked at him and started to say "Go get your pappa."
But instead, I woke up in an ambulance.
Remember the back and forth with the blanket? Right as he pulled me towards him, I fell flat on my face on the hardwood floor. He thought I was joking at first. Both of my kids did. My daughter was in the room too. My poor sweet babies were the only ones in the room and saw the most violent seizure to date.
When I came to in the ambulance, I had blood all over my hands and couldn't figure out why. I could hear Randy's voice. He had refused to NOT get in the ambulance. He told them he wasn't going to drive separately and they had to let him ride along.
I had fallen down on my face, and then convulsed and repeatedly hit my face against the floor. The kids, as I said, thought I was joking at first. I had shown them a PBSkids video about seizures so Brody quickly realized this wasn't the case and he yelled out for the grown ups. My parents said when they came into the room, they just saw blood everywhere and couldn't figure out what was going on. My sweet cousin just whisked the kids away into the backyard as quickly as she could to go play.
I bruised my face up pretty bad and almost killed my front tooth off but somehow it healed itself (after it turned gray, it decided to heal). Thank goodness my sister in law is amazing with makeup and you can't really tell I have bruises in my wedding pictures!
This is still a really hard thing for me to talk about. I hate the thought of my kids seeing me like that. I hate thinking about how terrifying that must have been for them. They're both still very shaken by the whole thing, as we all are. But they will bring it up from time to time- Quinn more than Brody. The other day, I opened my eyes wide as I listened to her story and she said "Mom! Don't do that. When you open your eyes big like that, I think you are going to faint again because your eyes did that before you fainted and had your seizure." And she will just say things like that from time to time. 
And Brody has witnessed a number of complex partial seizures. And the poor sweet boy is terrified whenever he sees me looking anything less than 100%. 

I met with the Stanford doctor after the wedding. And I had to relive that moment. And it's so hard. Typing it is difficult but actually saying the words to someone who knows the questions to ask, who wants the details.. it was awful. I cried. My mom cried. The doctor looked like she might cry. Anytime one of the kids brings up what it was like for them to relive that moment, it breaks my heart. I can't imagine what it was like for them in that moment. 

And now I struggle with work, with not driving, with knowing my kids are terrified of pretty much anything I do... and I feel so ridiculous. Here I am, in my 30's, and I can't shower on my own. I can't take my kids anywhere. I can't really be left alone. I pretty much can't use the stove if there isn't an adult around. I NEED a grownup at all times even though I am a grownup. 
My medicine makes me bitchy, or grumpy, or forgetful, or tired, or my personal favorite- a drunk sloth. And I can't function like this. The one med that works the best, but still not well enough, makes my hair fall out- I cry almost every time I wash my hair. It's horrible. Handfuls of hair just fall out. And the companion medication to that one is making me gain weight... When I met my husband, or not met because I've known him forever, but re-connected with him, I looked great! I loved the way I looked, I was confident and full of energy and felt really great about myself. I'm now 40 pounds heavier and losing my hair... Not feeling so great. 
On top of that, I feel like an idiot. I am forgetting easy things- how to reply to emails, what capris are called, how old I am, what month it is.. next I will probably forget my own name. 
All of this, it's depressing as hell. I am depressed. And I've never really felt this before. Sure, I've been sad. I went through a divorce, that was sad. It was a hard thing to go through. But I powered through, I got over it. This though... this is tearing me down. It's breaking me. 
I'm a pretty stubborn person who has and continues to put up with a lot. But this is too much. I am losing track of my days. I am losing track of my life. And it's too much. 
I never thought that anything could "suck the happiness from my rainbow" but well played, Epilepsy, you happiness sucking vampire bitch. 

And the count goes back to zero.

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