Focus on the outcome not the obstacle

It's a blog of many thoughts this time. 

The other day, one of my friends told me that he helped a kid who was having a seizure. A while ago, another one of my other friends helped a kid who was having a seizure. And it's in these moments, when I'm talking to them about these things that I think "Wow... would any of us even know seizure first aid and how to help these kids if I weren't dealing with all of this?" Maybe there's a reason for all of it. I have it, and now my loved ones have all learned about seizure first aid so we can help the people we're encountering. And you know what? If I have to battle it, so my friends can help people, I'm here to fight. 

I have written and not published several blogs in the last year, since my last "Yay it's been a year since I got the Neuropace!" post. But wow, it's been two years. I am still processing that. It definitely doesn't feel like it. That's absolutely crazy. 

A while ago, I was working at a winery with some of my favorite people- I had these two women I worked with that are just wonderful- I still absolutely love them. And one of them reads palms. (Think whatever you want about that- I was fascinated and she was reading everyones palms that day.) One of my fellow coworkers rolled his eyes and said "OK sure, here, read my palm." And gave her his hand. As she read his palm, he got creeped out by something she said because it was accurate, and walked away. I loved his reaction. 

I gave her my hand, she read several things on my hand- things I hadn't told them, she somehow saw on my palm. And then she said something about how I would be dealing with a health problem for basically forever... I had just had my thyroid removed, so we both thought she was talking about my thyroid and didn't read too much into that... and then not very long after that, I woke up in that stupid ambulance because of the seizure and HERE WE ARE.

And every time I find myself dealing with my epilepsy, I think of her and the palm reading and how we both went, "Yeah but no thyroid will be a struggle, I guess". And I didn't think anything of it... and now I wish I had. Maybe I would have been prepared. lol 

If I had paid more attention to how accurate everything else she said was, maybe I would have asked her to look into it more. Ask if she could see anything else. Maybe I would have been ready for the memory loss. And the frustration. And the hospital stays. And the fact that I can't do anything like I used to. When you take someone who was working full-time and running around taking her kids all over the place and coaching her daughters softball team and was using whatever free time she had to be involved in community theatre and now she's just... at home because she can't drive and she can't really remember anything... it's a lot. Or it was a lot to have taken away. 

SO, with that all said (and it's a bit of a babble this time). I am very happy to be at my "Two Year Cyborg Mark". I am very happy that my seizures are quick, I recover quickly, I don't have to sleep all day when I have them. I just go "OH, I think I had a seizure..." and just sort of move on. It's a completely different experience than when this all started. And maybe MAYBE I will be able to drive again someday. Who knows? I have faith in my cyborg brain. We'll see what I'm capable of. Slowly but surely. My doctor said it will take many more adjustments, but we are getting there. And that's all I needed to hear. WE ARE GETTING THERE. 

We should celebrate every year that we made it through and every year that we're happier and healthier. ― Ellen DeGeneres

     Today I was writing the date down and talking things out with my RNS group and I realized "OH MY GOD! It's been a year. A YEAR!" I have been a cyborg, officially been a cyborg, for a year. Happy Neuropace day to me!!! 

    What a crazy crazy year this has been. 

    Recap: I woke up in March 2020 in the hospital and it felt like I had awoken to an apocalypse... They kept me for 10 days and then after all of that, after the tests said I was a candidate for the RNS, I was ready to get this device, insurance and the hospital and I don't even know who- fought with my doctor because they weren't doing "elective" procedures due to COVID. I cried- a lot- when I heard that. But he fought hard and he won. And on August 11, 2020, I went in for the surgery that has been slowly changing the way my brain is behaving.  

    I am still having seizures. They are not as frequent, they are not as long, and they are not as noticeable. It's amazing how much this device has changed my life. I was able to go walk around DC and enjoy the monuments and the heat didn't cause me to have a seizure like it would have just last year. Hell, just walking around would have caused one last year. I am able to go DO things. 

    I can wear my reading glasses without the sensitive spots on my head hurting, the surgical spots have healed. I have hair- it's grown back and I feel like me again. It's so weird to realize that it's been a year. 

                                                            Before I went in:

When I came home: 

(Thank you for the shirt, Kirstie)

Now:

(See??? I have hair!!!)

 I can't wait to see how much my brain continues to improve. And I can't wait to get rid of one of/some of/all of my meds. We are slowly starting to see what is causing the seizures, the triggers are starting to reveal themselves and slowly we will be able to take care of those. It's been an interesting journey. And it's not even close to being over. 

I feel my brains, like a pear, to see if it's ripe; it will be exquisite by September.

     It's been a long time. And that quote speaks to me... Not the way Virginia Woolf intended it, I'm sure, but oh my goodness, does it speak to me in a literal way. You're supposed to give yourself a year to heal from brain surgeries- which puts me at August. So by September, I should finally feel healed. 

    The scar is healed from the surgery. My hair has grown back. I still have pain in some of the areas from the March surgery, but I'm told that's ok. And I have weird pressure in areas from the August surgery so maybe by September, I'll feel better?

    I have had a lot of people asking me questions about the Neuropace and my "cyborg brain". Since the last time I updated I was talking about my neurosurgeon arguing with somebody about it not being an elective surgery. They aren't scheduling elective surgeries during COVID. We were worried that I wasn't going to get it after all- after all of tests and everything that we had done to get it, they were trying to tell us no.  It was approved though, and I had the surgery in August. 

    I think a lot of people expected it to stop the seizures right away. (Which would be amazing!) But it's not quite that simple. Which seems to be what the questions are about. The device is basically learning the way the brain works, and learning the ways my seizures happen, and as it learns these things, it learns how to stop them. We are trying to find my trigger(s). So far, we can't seem to figure anything out. Each time I go to the doctor, they make adjustments to the device as necessary, and eventually, we will (hopefully) be able to say this thing is stopping my seizures before they start. And maybe I will get the reduce my medications as well.

    I went through January without any real seizure activity, and then February my brain decided to throw a party again, and now here I am. I am still having seizures. Just this morning, I had a typical spill coffee on my lap kind of seizure. BUT the "seizure hangovers" are no longer there. Before the Neuropace, I would have to sleep off the headaches caused by seizures and rest for the whole day if not for the day after as well. And now I have a seizure and can just go on with my day. So, yes, I am having seizures, but there is already some kind of improvement in my day to day life and that is wonderful. 

“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.