The best way to appreciate your job is to imagine yourself without one.- Oscar Wilde

     I haven't really written one of my "Love letters/thank you letters" to anyone in a long time. I thought maybe I would write one that is long overdo.

    First, this one is finally being written because the fact that people sit here and are complaining of wanting jobs/needing jobs, it's driving me crazy. It's like when people started griping about not being able to leave the house... it was like "Join the club". If you want a job, if you need a job, LOOK AROUND. People are hiring everywhere. Go apply somewhere. If you need a job THAT BAD, go get one. If you really needed one that desperately, you would be applying for a season job at a Halloween shop or MacDonalds or something. 

    I can't work. I can't drive myself to a job right now. We still don't know if my brain is going to behave itself long enough for me to function for a job. I can't multitask well enough to get things done. It's upsetting, but it's the truth. 

    I miss my job. I LOVED my job at Naughty Oak. Steve and Emily Kitts were amazing. I had been working as a catering manager when the seizures hit and I had to give that up. And I was on a walk trying to think about all of that, deal with all of that and walking through Old Orcutt as their brewery was almost complete. Steve was outside. We started talking. 

    I told him about everything. I had recently seen him at some sort of event. He was pouring beer. I was serving snacks. And I thought I didn't like beer. He said I just didn't know how to like beer. I laughed and told him he was probably right because I thought I didn't like wine either and then I learned about it and it turned out I really did. He poured some of his beer for me and it was really good. So, after hearing about what had happened, and knowing I knew about his beer and that I was good at hospitality (since he had seen me at the event), he asked me to come in the next day to talk. I did. We talked about me working for him and being the event coordinator of sorts for the brewery. Going to the events. Helping book bands and food trucks. He knew I couldn't drive. He would help get me places. I accepted. It sounded so fun. Working with someone from high school and helping him open up a business! This sounds awesome. 

    As time went on, Steve and Em were just so amazing. Naughty Oak was so much fun. All of the events I went to were a blast. I loved my coworkers, I loved the musicians and bands, the food trucks, the regulars, the trivia nights, everything. It was just awesome. And they understood everything. Randy even started to work there a couple of nights a week. 

    One day I came in and a coworker said "What was that last night?" I looked at him, confused. I had no idea what he was talking about. Apparently I had a seizure and he had to call Randy to get me. But he thought a seizure would be dropping on the floor and shaking, not spacing out and being weird like that. I was worried he would be weird around me from then on, but nope. He just shook it off and acted like it had never happened. 

    Giving up my job because I had to get brain surgery and we were unaware of the recovery period was one of the saddest things for me. Whenever I put on my Naughty Oak hoodie or t-shirt (because yes, even out here in Indiana I still represent), I miss the Kitts even more. I make sure to stop into Naughty Oak anytime I am in town just hoping they will be there (they haven't been yet) so I can say hi to my Bossman and Bosslady. I don't think they will ever EVER understand how much I appreciate what they did for me. Having to give up my catering job because I couldn't drive, I thought was just awful but then being offered the job there- I learned so much and had so much fun. Steve and Emily are wonderful people and I am so proud of them. And I have yet to taste beer as good as theirs... not that I'm bias or anything. 

 

Whenever I investigate a smell, I find the answer is always bad- It's never: What is that? *sniff sniff* Muffins! -Demetri Marti

       Well... My first Olfactory aura was certainly interesting. I hope that NEVER happens again and I'm going to be paranoid for the rest of my life whenever I smell something bad. It doesn't help that Randy has a very poor sense of smell so when I say something about something smelling good or bad, he can't smell it. So, without someone else being in the room, I'm kind of screwed. 

    For those of you who saw the picture of me where it looked like I was in a bar fight and were wondering what the hell happened, here we go: 

    On March 1st, I had the first tonic clonic (or grand mal, whatever you know it as) seizure that I've had in six years. Typically, my seizures involve my spacing out for a minute, maybe spilling my coffee on myself or something and then its done. And then Seizure Katie comes out and she's a little insane (I think we should really revisit the possibility that Sybil just has seizure moments and then messed with people and named her "Seizure Sybil" according to what she was doing). Seizure Katie will try to strip on the back deck (Not really strip but think it's her bedroom and try to get into her pajamas out there, she will yell at Randy for absolutely no reason at all, she will snuggle Randy and think he's amazing (Because he is amazing), she will apparently be such a spaz that she can't get up the stairs from the basement as if she's drunk but then can get up the stairs to her room no problem just a few minutes later and I will have NO idea any of this ever happened.... It's just who knows.  SO- Seizure Katie... We never know what we are getting. 

    Tonic Clonic seizures: A type of seizure that involves a loss of consciousness and violent muscles contractions

    Focal Impaired Awareness: The person may look awake but they aren't able to respond fully, may be confused or not remember events. They are not fully unconscious.

    That's the difference between March 1st and my usual kind of seizures. That is a BIG difference. The Tonic Clonic is the kind you see in movies and on TV and the kind Quinn has almost punch kids for making fun of at school. 

    So on March 1st, I smelled something weird in the fridge- or I thought in the fridge- just in the kitchen. I couldn't figure it out. And I looked all over the kitchen. I wiped everything down. I was trying to clean everything and take care of it. I was going to make spaghetti that night so I needed a clean kitchen. I couldn't figure out where the smell was coming from. And I couldn't make the smell go away. I asked Randy if he could smell it, if he thought the milk was bad (even though it wasn't a bad milk smell) or if something else in the fridge went bad. I told him I took the trash out and I wiped stuff down and couldn't figure it out. He said the milk smelled fine and he didn't smell anything bad (even sticking his head in the fridge). 

    I started getting the spaghetti ready. I turned music on. I started chopping onion, I got garlic ready. I thought those smells would help me get rid of whatever the hell that stinky smell was that I could smell. And I was just focusing on those smells, and it was helping, but that smell was still there... And then I started getting the meat ready for the sauce. And the smell was stronger as I was prepping the sauce. 

    I sent a text to Randy who was down in the basement. I told him that I had the water boiling for the noodles but the sauce smells bad. I think maybe its the meat. And the meat is what smelled bad in the fridge and I didn't even realize it. Maybe he should come check when he has a minute and see if that's it. He said something about trusting my judgement (I think this is how the rest of the conversation played out, it DOES get fuzzy right here) but if I think the meat is bad, the meat is bad, and that's a bummer. We will just have to order dinner. 

    I had been getting the garlic bread ready. And then I was in an ambulance. 

    Now, one of the super awesome EMTs asked me what I was making and said it smelled really good. I was shocked to hear that and asked if he was serious because I thought it smelled disgusting and then realized what could have been happening. Randy and Quinn both said it smelled really good when my family met me at the hospital. And when I talked to my neurologist about what I had been experiencing all day, she said it was the aura. So, that's fun. 

    Randy and Quinn were both home while I was cooking. Randy, as I said, in the basement. Quinn was in her room. They both heard my fall. Both came running. Luckily I was at the center island just putting butter on some French bread, if I had fallen a minute earlier, I would have pulled the pot of water or saucepan onto myself. It took about a week to be able to open my mouth normally because my jaw was so sore. My bruises that you could see are gone but my face still hurts to touch in certain spots. They found me face down, beating my face against the kitchen floor. Randy got to me first, thankfully, and was able to just tell Quinn to call for an ambulance. With how covered in blood I was when I came to, I would hate to think if she found me first. 

    The firefighter/EMTs down the street, had to deal with Seizure Katie. And Oh My GOD the story I heard. Apparently, I was THROWING PUNCHES AT THEM. At one of them more than the others and actually made contact (I took them cookies yesterday to apologize for Seizure Katie's bitchy behavior and they said he deserves to be punched lol)  And when they were trying to take me to the ambulance, I kept telling them no, I couldn't go without my husband. They said Seizure Katie just practices stranger danger. Randy had to get me to go with them. Apparently I was creating quite the scene and probably gave them quite a fun story. But I  made them Snicker Doodles, so hey. That's something. 

    And from now on, for I think, ever, I'm going to be terrified whenever I smell something bad. I don't care if I am driving by a feed lot or something. If I smell something bad, I am going to worry. That is not something I am going to be able to get over. 

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.