“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. 

Sometimes you've got to take a step backwards to take a few steps forward...

And oh my goodness am I hoping the steps (that feel backwards to me) are going to help me more forward! 

We met with my new neurologist/epileptologist (finally) last Thursday. It felt like forever. We have been waiting to meet her since we moved. It was very difficult trying to get the appointment set up because the offices weren't communicating properly. BUT finally, we had the appointment. And we were relieved, and excited, and so ready. 

Since my wonderful doctors at Stanford were ready to "make mom a cyborg" as my kids were saying, and give me a new option and they were the ones who said "This is the doctor you're going to see when you move", we were under the impression that my tests, my images, my everything would be sent to her and we would just kind of go from there. When we got to the office, I was prepared to tell my story all over again, I always have to, no matter which doctor I'm seeing- it can even be a gynecologist (sorry boys) but they are treating me for medical conditions, so they need to know everything. I always have to start at the beginning, no matter what. I told her how it all started. Then she asked where my images and results were. I was shocked. I had requested they be sent to her, and I called several times to make sure they got sent to her and I left several messages with the records department telling them to SEND THEM TO HER. So I don't know why she didn't have them. So other than us telling her stuff, she didn't have anything. 

She is a very smart woman. The appointment went really well and I like her a lot. It's been decided that now that she has my signature on papers that she can fax to them, she can send the papers over and get my records rushed, but it would have been a better appointment if she had them beforehand. AND before she jumps onboard with the implant option, she wants her own set of data and testing. I 100% respect her for wanting her own results but I am still about 50% disappointed because I wanted something else to happen. 

November 11th, I will be checking into the hospital for a video EEG... 500lb purse of wires, sticking stuff all over my head, trying to make me have seizures, we all know the drill by now. It's awful and I hate it. (Although last time my friends made it a lot more entertaining!) The nice perk this time is that the hospital is close to my house so I don't have a 3+ hour drive home added at the end of it all, so I can just come home to my kids when it's all said and done. 

One round of video EEG and she wants her own MRI (which I also hate because claustrophobia). I can do this. I can do this because I know it's getting me somewhere eventually. I hope.  

Today is a hard day.

My house is a wreck. There are boxes everywhere. I am trying to unpack and get settled. We are still waiting for some furniture to arrive. The fence just got finished today, so up until now the dogs have had to go out on leashes every few hours, which they aren't used to, so that's been a whole situation- accidents everywhere, all over my new house. It's been... stressful. But I love my house. I love Indiana. It's been amazing. I have had 3 seizures since the move, stress and trying to adjust the sleep schedule will do that. And it's ok, it's to be expected. I tell myself that anyway and shrug it off. Am I pissed off about them? A little, sure. They're annoying and exhausting and they upset my kids.

When we first got to Indiana, we went to the BMV to switch the truck registration, our licenses, all of that fun stuff. When you move to Indiana, you have to take the written test. Knowing my brain would NOT function the way it needs to in order to take the test (reading multiple choice questions and then answering them is really hard for me, I have to read the choices over and over), and because I can't drive anyway, I opted to just surrender the license and just get a state ID. The lady looked shocked. She said "You know if you choose to get a license later, you have to start all over and take the driving exam." And I just kind of laughed and told her I probably should anyway and I'm fine with that. I haven't driven since... I can't even remember. It's been long enough that I should be tested before someone just hands me my license again, so I'm 100% ok with that. I explained that I have epilepsy and it's the most responsible decision. She respected me for that and gave me my ID. 

In the middle of trying to sort out our new life, we see the news about Cameron Boyce. (If you have somehow missed it and have no idea what I am talking about:Please read this)  Randy asked if I saw the news. I hadn't yet, so he handed me his phone and I fell apart. It was hard to read for many reasons. Yes, SUDEP being one of them but my kids loved him. Quinn especially. She has him on her pajamas and on her sheets and her backpack. We are all about 'The Descendants' in this house. And the kids watched 'Jessie' all of the time. I would always groan and say "Ugh.... are you watching 'Jessie' again?" But honestly, I loved watching them watch it because they laughed at the silliest things. Cameron Boyce was on my TV a lot. 
The kids saw me crying and asked what was wrong- their first worry is that I'm having an aura or that my head hurts when they saw me covering my face, when they saw that I was crying, they asked why. And that put me in a hard position. I want to be honest. I want to tell them why I'm crying, I know they're going to see this news somewhere else. I would rather they hear it from me but oh my god, what scary news to hear. One of their favorite actors died and he died because he had epilepsy. 
My kids are rockstars. They handled the news really well. Quinn always asks questions and her first was "But you don't have those kinds of seizures anymore, right?" (referring to tonic-clonic) and then she said "And you take your medicine too, right?" Someone listened really well when she got to go with me to my doctor appointment. Brody hugged me tight, listened and made jokes. That's how he deals. Quinn has been asking questions off and on all week. She has asked about "Carlos" which is Cameron Boyce's character in 'The Descendants' and she asks a lot of questions about SUDEP. I answer them as honestly and thoroughly as I can. I told her since the doctors don't know a whole lot, neither does Mommy and she seems as satisfied with that as she can be. 
I hate that right as the kids are going through the huge adjustment of moving, this huge scary thing happened that hits so close to home for them. For us. Every time something new pops up with his name on it, I cry. He seemed like an amazing human. He was doing great things. Contributed to a lot of causes.
There is suddenly a lot of epilepsy and SUDEP awareness in the news and it sucks that it took someone famous dying to make that happen. Maybe it will help erase the stigma, who knows.

For those of you trying to figure out what SUDEP is or wondering about risks and things like that, here is a link: https://www.neurologytimes.com/epilepsy-and-seizure/5-important-facts-about-sudep. It had some good stuff. But as I said, they're still trying to figure it out. SUDEP is like SIDS-  terrifying and not understood yet. 

After my first (tonic-clonic) seizure, my mom googled too much and then insisted on sleeping in my bed with me and wouldn't explain why. This. This is why. Now I get it. But when you're 32 and your mom won't explain it, your body hurts, and she wants to sleep next to you, it's odd. But she was scared and didn't want to scare me. After seeing the news the other day, my friend said if she knew SUDEP was a thing, she would have been sleeping outside of my window when I was experiencing tonic-clonic seizures. I have complex partial seizures now, for anyone worried, and they happen in the mornings usually an hour or two after I wake up- I go into a state that is similar to sleep walking and I don't know what I'm doing, and then "Seizure Katie" normally makes coffee and goes about the morning routine and when I snap out it, I don't have any recollection of it. It's very strange, but that's typically how my seizures play out. So for those of you that read about SUDEP and checked on me, thank you, but my seizures don't occur at night, and I take my meds and do all of the things I am supposed to. And maybe I will one day be a cyborg and seizure free and then we won't have to worry about any of this bullshit anymore. 

So here we are.... July 12th. 5 days seizure free. 

"Once you give up, it's over. So you can't give up."- Adam Eichenwald (A Mind Unraveled)

I recently read A Mind Unraveled by Kurt Eichenwald and cried my face off through a lot of it. The struggles he faced through his battle with epilepsy are completely unreal and so much more than I have dealt with, and it helped me realize that even though I can't work and I can't drive and I sit here in a pool of self pity throughout the day, I need to kick myself in the ass and do something. I haven't figured out what that something is yet, but I'll figure it out eventually. 

***That was written... and I got interrupted... And a few weeks later, I am continuing***

And just as I got motivated and ready to do something... my seizures came back and that was just kind of a kick in the face. And that's fine. I can work through it. The problem is, we are moving soon. LIKE SOON. Like the 19th- SOON.

Randy and I bought a house. In Indiana. And so we have been packing and trying to get ready for that. And in the midst of all of this, I had follow up appointments with my neurologist and my neurosurgeon. We discussed the seizures I have been having, the frequency, the auras, everything. And I am now a candidate for a new medical device that is similar to a pacemaker.. but it's for the brain. And it is implanted in the skull with leads placed in the brain at the spots that are still firing off seizures. That's the simplest way to explain it- it's actually an amazing device and there's a lot more to it, but that's the quickest way to tell you about it. 

They gave me a booklet about it and they gave me some contact information for people who have been living with the device. I was very excited to be able to talk to people and hear what they have to say. I reached out pretty immediately. I was on the phone with someone for over an hour while he told me his story...

This man had to have an on demand pace maker because his heart stopped whenever he had a seizure. They were going in to take out his right temporal lobe and then he was told they couldn't do it because they were also getting signals from his left side. That's when he was told about this device and this is when they were just starting and it was in the trial/research and development kind of phase. And he told me, at this point, he was sort of "I don't know how many more seizures my heart can handle. How many more do I have left? If nothing else, this research will help someone else. Let's do it." So he did it. He had the device put in. Eleven years ago. And he has been seizure free for six and a half years. He went to college. He has his masters. He went from four medications, down to one. Remember, I said he was part of the trial group, so he is on his third (and the current) version of the device, he said they know exactly how to make it work now and it obviously works now because he is seizure free and he is telling me all of this, and I'm trying to stay composed. 
It was SO SO SO nice to talk to someone who gets it.  He was talking about how amazing it was to go back to school and he was able to read his text books and he could read the pages just one time and he knew what he read, he didn't have to read them again and again and still think "Wait, what did that say?". 

I had been on the fence about the device. But he helped me see that it is pretty amazing. And I would LOVE to wake up and not worry about going into a seizure. And I would love to read a book and read a page just once. I would love to go back to school, that was the plan before my brain decided to throw this party. 

I wasn't going to let epilepsy win when I first started this blog... But honestly guys, it has been kicking my ass. Three brain surgeries (only two of them successful) and I'm still having seizures, it's pretty discouraging. I've spent A LOT of time in the hospital with the tests and the surgeries and the recoveries and it's exhausting and I am over it. I cry a lot and I'm angry. I think I cry because I'm angry.

When I went to see my doctors last week I didn't think they were going to offer me anything other than a medication adjustment. I definitely didn't expect this "Let's put a computer in your head and make you a cyborg" option. But I'm interested and it looks awesome. I spoke with my doctor and she said there are amazing doctors in Indiana that she can connect me with that can do this surgery and she will help me set it up and she can still overlook the data and it will be fine. That made me happy and helped re-assure me. When I spoke with my neurosurgeon, he was like "No I've been working on you and know your history, lets do it before you move". And I thought maybe we can finagle some of the dates... but it was pushing it. We went ahead with the pre-op blood tests and everything anyway just in case. This was on June 6th.
Yesterday, I received a phone call from the hospital letting me know that my procedure was pre-approved. ????? Cool. WHAT? I hadn't scheduled anything, and usually your procedure needs to be scheduled before it is approved. Before I could ask any questions, the lady wished me a nice day and was gone. Dumbfounded, I walked down the hall and verified things with Randy. 
"Hey Babe?"
Randy turned and looked at me. "What's wrong?"
"Nothing. Did we schedule my testing and surgery?"
He looked at me and was just as confused as I was, which was a good sign, it means I didn't schedule something and then my crazy Epilepsy Brain erased it. And then I explained what just happened. We decided I should call the surgery scheduler. She was not at her desk. I left her a message explaining that my procedure was approved but I was moving and I didn't know it was scheduled and please help. 
She called me back kind of laughing because I had the drop on her. She said she pencilled me in because she was going to call me but wanted to talk to me and apparently everyone in her office moved ahead of her while she was out of the office for a few days and got it approved and everything. 
But if I am interested in the surgery... 
I can have it done on 
FRIDAY. 
FRIDAY?!
She said she understands that's a little soon and overwhelming... "Um... listen lady, you want to put a computer in my head and you are thinking it's a little soon and overwhelming? It's Monday." (of course I didn't actually say that)
She had to have a meeting to verify everything with the Epilepsy staff and I said that was good because I had to have a meeting with my people too. So after trying to figure out logistics of switching up move dates by a week (and then finding out it could maybe be two weeks or more) we decided it was best to wait until I am established with a team in Indiana and have it done out there. BUT HOLY COW! What an emotional roller coaster that was! For at least two hours, if not more, I was just sitting there yesterday going "FRIDAY?!"  It was quite the shake up. 

I am glad the doctors presented me with another option. I am SO grateful for Kurt Eichenwald's book. And I loved hearing that man's story on the phone the other day and that he took the time to talk to me. I can't wait to hear from other patients and just talk to other people dealing with epilepsy. 

My friend said today I can't give epilepsy another win, and she's absolutely right, because that's one step closer to defeat and giving up. I need to stay strong. I need to accept that it's OK to cry and be angry and not beat myself up for it. As I once said to my kindred spirit, Ezekiel, when he smiled at me SO SWEETLY "We're gonna beat it, and we're gonna win". I just need to remind myself of that. 

#Pixiequeen

Lately I have been giving these sort of shout outs and writing these love letters of sorts, and that's just what this is...soooo...

There has been a lady in my life that has helped me TREMENDOUSLY in my path to healing and I don’t even think she has realized it and I am super bummed to say goodbye to her. 
This woman has helped build me up after every surgery and helped me stay confident and feel pretty.
Without Sheena, I would be a horrible crying mess of a person. 

• My meds make my hair fall out. 
• I have had electrodes stuck onto my scalp more times than I care to count. 
• I have had my head shaved by nurses and I have had 3 brain surgeries…. 

...And every time I have gone back to Sheena, in tears (or close to it) about these things and she has fixed me. 

And she fixed my hair for my wedding! That’s how it all started. I needed my hair fixed, and she fixed it… but before my appointment, I had a seizure. A crazy violent seizure that caused me to be taken to the hospital via ambulance. And the beauty school student in me (that’s right for those of you that didn’t know, I’m actually a certified cosmetologist) was worried about messing up her schedule so I texted her from the ER and let her know I wouldn’t be at the appointment and she said “Why are you texting me from the hospital? Please take care of yourself!”  But I didn’t want her to think that as a new client, I was a total flake- turns out that was not her concern at the moment, her concern was me. Once I was better, she found a slot for me and she fixed my hair. And my hair was perfect for my wedding!
She has always been aware of and concerned about me and my epilepsy and asked about the signs to watch for and what to do if I have a seizure. SHE IS AMAZING.
Every single time I leave her chair, I feel beautiful. I could be in my crappiest clothes without makeup on and she could do my hair and I would feel like Cinderella after the Fairy Godmother waved her wand.
She is just wonderful and I wanted to make sure she got a proper shoutout. 

When I was first diagnosed with my epilepsy and my hair was falling out and I was a hot mess, I would seriously cry about my hair 2-3 times a week, I couldn't even brush my own hair sometimes because it upset me so much, so Randy would have to brush it for me- but I don’t think that has happened since she very confidently told me I could rock a pixie cut and I haven’t looked back. 

Like I said, Sheena has helped me feel pretty which sounds shallow but in this sort of situation it has helped the healing.

And she is so fun to be around. I absolutely love my appointments with her. She is just the best. 

I am so happy that I had an awesome co-worker (shout out to Amanda!) that gave me Sheena's name.

Thank you Sheena for kicking ass and making me feel gorgeous every single time I leave your chair. You are the best!