"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! 

If you wish to forget anything on the spot, make a note that this thing is to be remembered.-Edgar Allan Poe

My brain is funny. (Not really, it's full of holes and it sucks.) It likes to remember the dumbest things that I don't need to remember and forget things that I need. 
"OH! We said we were going to have lunch today? I am sorry. Please don't stop being my friend. I swear I love you. My brain just sucks." 
But I can probably tell you what color shirt I wore on some random Wednesday my sophomore year of high school. 
Or when I try to FORGET things that I don't want to remember, they sit there, lodged in my head, which I know happens to everyone, but seriously, if I am going to have memory problems, they should be the ones that go, right? 

Today is a weird day for me. It is the "anniversary" of my first surgery. For those of you just joining my story, here is the link to that:

https://katievsepilepsy.blogspot.com/2018/04/hope-is-last-thing-person-does-before.html

It is hard for me to talk about it and relive it so I try not to, but today, it's one of those things that just keeps on showing up. THANKS FACEBOOK! 

One year ago today, I had a brain hemorrhage. And that was terrifying. 

I have had three brain surgeries in one year. That is insane. I knew that they were close together, but it didn't sink in until today that it was three in one year. HOLY CRAP. 

So here we are. 

I am still recovering from #3. And I have had 3 seizures since the surgery, but they consider it OK because my brain is still healing so I don't need to worry yet and I need to just accept it as part of the healing.

This morning, my amazing husband (and I don't know if I give him enough shout outs in this blog because you guys, he's seriously my rock) brought up that it's been a year since my first surgery and said something about how far we have come. And my daughter said "Since the surgery where your brain bled?" And she hugged me so tight. And gave me a kiss on the cheek. And you guys, I always talk about cherishing your friends and how awesome mine are, but have I told you about my kids and how much I cherish them? Because they are the best. They are my reason for going into surgery three times. They are the reason I keep on doing this. They are my sweet little monkeys and when you feel a hug like that, you know it's worth it. 

This blog entry hasn't been as cohesive as my others, and I am aware of that. I have been a bit overwhelmed with the "anniversary" and just had to get the thoughts out. I'm still fighting. And I'll keep fighting. And maybe one day, I will win. 

“A friend who understands your tears is much more valuable than a lot of friends who only know your smile.”

I know I've been saying it a lot lately, but seriously, my friends are the best. 

On January 23rd, I had my 3rd surgery. 

On January 22nd, my friend, Steve, came up to Palo Alto to stay with us. 

On January 23rd, when I woke up from the surgery, my friend, Chelsey, was there- from Alaska. 

These two had arranged things in their lives so they could be there for me. (Not to mention the amount of finagling and attempted lying in took on my husbands part to surprise me with Chelsey.) 

It was so amazing to have two of my best friends in the world there with me. My doctor said they would be my lucky charms. (But no pressure on them, right?)

Those two saw me right out of surgery...  I don't know if you've ever seen a person after they wake up from brain surgery, but it's not a pretty thing to see.  My face is swollen, I have wires everywhere. It's just... not the best. But when you've been friends with people since you were 15 and you are now... much older than that, it doesn't matter. And they were amazing. And it made me so happy to have them there. After the other two surgeries, they checked on me, sure. But actually having them there, getting real live hugs and everything, it was a totally different experience. It was so nice. It definitely boosted my spirits. 

Everyone has been saying that the the doctor was right, those two would be my lucky charms... and "The third times the charm!" and "this time will be the one!" and I am so sick of having lasers in my head, so you know...  They'd better be lucky.  And I have actually had a few people ask me why I haven't updated my blog in a while, so here I am, updating. 

On February 19th, I had a seizure. But I was told this is ok. This can happen during recovery as your brain gets used to everything and your body is trying to figure out what's going on. If you remember from my other surgeries, this happened then too, so I didn't worry too much about it.  I have had a few auras, but nothing else. 

On March 7th, I went for my first post-op MRI and follow up.  I told the doctor about my seizure and the auras. He looked at the MRI. He heard what I had to say. And right now, we are going to go with a cautiously optimistic outlook. We are doing much better this time, than we were the other two times at this point in time. And that is GOLD TO ME. So I guess I did have a couple of lucky charms with me this third time around. 

Friendship is amazing. And true friends are a blessing. I've said it a million times lately, but I truly mean it, cherish your friends. You never know when you'll need someone to cry with when your face is swollen and your head is bandaged. 

"Her fight is my fight"

Last time I told you all about my amazing friend, Susan. She posted a video on my FB wall where she was wearing a shirt that has the Epilepsy Awareness ribbon on it that says "Her fight is my fight". It was amazing. 
Ever since then, my husband, my kids, my cousins, my friends, ... everyone... Has been sending me pictures and completely overwhelming me in the best way with their love and support by wearing these shirts. It's amazing. I can't believe that this is happening. Every single time I see a new person in those shirts, I laugh and cry at the same time. It's such an amazing feeling. 

I just finished my stay at Stanford for the video EEG. I ended up there 4 1/2ish days. I decided to help pass the time and to keep everyone updated, I would do a Facebook live feed. Everyone had a lot to say about the ridiculous things I had on my head. This was night one. 

  

My husband thought it would be really funny to encourage everyone to make their own "Gauzehelmets"....  And my friends were UP TO THE CHALLENGE. 

I received pictures of people with actual gauze, but I also received pictures of my friends wrapped in toilet paper, ace bandages, and I don't even know what. My nurse came in and I was in tears from laughing so hard. I had to tell him that I was fine, I just had amazing friends and showed him the pictures. And he agreed, my friends are awesome. 

I wasn't having any seizure activity, at least not any that was detected by the kind of electrodes they had with the "Gauzehelmet" so they decided to try a high density EEG. I got all dressed up like Jean Grey and posted a picture of my new "mask" and made a comment to Randy, "I can't wait to see how my friends copy this look." He laughed and said "They aren't going to be able to copy this."

PSHHHHH.... He forgot he was dealing with theatre people. My amazingly hilarious friend, Maureen, followed up with a picture of stickers all over her face, and I nearly died. It was so hilarious. So that became the challenge for my friends, sticker faces....  Not to be outdone, I did have a friend put post-its on his face.   

You guys...  MY FRIENDS AND FAMILY ARE AMAZING. 

I couldn't have survived the hospital stay without that. It was so great. 

When I FINALLY started having seizures, and "beautiful brain spikes" and the doctor were able to see what they wanted, we now know that the seizures are coming from the same area as before. 

The doctors at the clinic gave me a few options, but I speak with my neurologist next week, so I'm not sure if they will be the same options or not. 

Basically we are down to the same surgery again, a more intense surgery, OR more intense/invasive testing... that involves surgery. (implanting needle electrodes into my brain so they can get a better diagnosis about where exactly they’re coming from so they can REALLY pinpoint what to take out before just taking out or burning part of my brain) 

The dr explained it like this-

He looked at my room at said “Look at your bed, your husbands cot and the chair. Let’s say we went in thinking the problem was the bed and we took the bed away. Now you’re still seizing. Do we go in and take out the cot and find out it’s the chair?” 

But after the seizures and the sensations I explained, he said it could be “insula” which are basically like cracks coming off of where the first spot was. 

He said to think of it like a crack in the sidewalk- it keeps growing. 

If the seizures are stemming from the insula, they can’t go in and remove anything because that will probably keep happening. 

Doesn't that sound just lovely???  But I don't want them taking anymore of my brain out or burning more off, because it's my brain... And they can't put it back in. So...  Here we are. 

We will see what my doctor says on Monday and go from there. 

I can't say thank you enough to my friends and family for their love and support and their care packages and their silly pictures and their T-shirts. I love you all so much. 

Cherish your friends everyone. 

“I value the friend who for me finds time on his calendar, but I cherish the friend who for me does not consult his calendar.” -Robert Brault

Yes... It's a long title... But nothing has ever been so true. 

I was initially just planning on writing this blog to update everyone on how shitty and downhill things went. 

At first it was "Don't worry, these seizures are OK because you're healing and your brain is trying to figure everything out."  And that sounded reasonable and we all accepted it. Then, on September 9th, I had 3 seizures in one day. And my doctor wasn't happy about it. None of us were. So she booked another "Video EEG"- remember that? Where I go up to the hospital for "3-10 days" and look super cool, like this 

???  I get to do that ALL OVER AGAIN!!!!

So they are going to try to figure out why the hell I'm having seizures. And where they are coming from NOW since I've had surgery TWICE. 

When I heard that news, I got angry. REALLY REALLY ANGRY.

And I started remembering how AWFUL it was to try and wash all of that stupid glue out of my hair. And that is the real reason behind my new haircut... And I agree, I am rocking the pixie, and I should have done it a long time ago, but I was about to "go full Britney" and shave it. Luckily, I have an amazing hairstylist and she gave my an adorable pixie cut instead.

And yes,I understand that this needs to be done. But it takes me away from my kids for "3-10 days". When they go to their dads, I know how long they are gone. When I'm up there, I have no idea how long I'm up there. I'm just going to miss them. 

And when I'm up there, I'm being poked. And bothered. And followed to the bathroom. And lights are flashed in my face. And I am miserable. 

And despite my best efforts to go into hermit mode, my wonderful husband wouldn't allow it. 

I had a horrible dream where my fingernails got ripped off... My nails are very brittle because of all of my medication, so I was terrified it would actually happen. When your best friend is a nail technician, she is able to help with that. Christina gave me adorable gel nails to help me feel better... They are stronger now and I feel better. Randy booked the appointment, so it forced me to socialize as well. And I vented about my anger towards the whole Video EEG thing. I had already unloaded on my friend Justin as well. And my poor sister. And I think on my poor co-parent. lol I'm getting pissed you guys. And every time my head hurts or I have a seizure, I get even angrier. 

I didn't have a hemorrhage and go through a second round of surgery for this NOT TO WORK. Come on brain!  Figure this shit out already!!!!

So... Somehow...  SOMEWHERE...   Someone was like "I have an idea... this is going to cheer her up, I  think..."

My amazing friends decided to just make me cry. 

I have this adorable friend, Susan. We met in high school. And the minute I met her, I was like "Ugh... she's talented and adorable. I guess I'm going to be stuck hanging out with her in theatre." LOL She is one of those people that you just love the minute you meet her. She is amazing. And after college and after everything, we managed to reconnect and stay in touch. And it seems like no matter what, if we are in the same city, no matter how little the time window is, we manage to squeeze in the chance to say hi to each other. Last time I saw her, she sat at the table and was like "Hey, I just got back from Cabo"... and she pretty much meant literally. But she didn't care. She was exhausted and most people wouldn't have made the time, but she did. She came by and hung out. 

She is just incredible. 

She is an amazing woman. And I just absolutely love her. She made me an amazing video the other day... And I haven't been able to get over it yet. This post ended up being a post about how amazing my friends are. 

I cherish them so much. It's funny when you're a kid, or a teenager, you don't realize who you're going to be sticking with as an adult. I can't say Susan and I were particularly close in high school. We got along well and had a great time together, but I never imagined that she would be with me through a divorce, or my son would have a giant crush on her, or that she would be there to support me through a battle like this. 

I know my friends are fierce and loving. It's helping turn the anger into laughter which is exactly what I needed. 

Cherish your friends everyone. 

"Do not confuse my bad days as signs of weakness...

Those are the days I am fighting the hardest."  

That was on one of those cheesy quote things on Pinterest, but it fits.

It's been almost two months since my surgery. I am mostly recovered. Mostly.

My head still hurts, but I pretend it doesn't. Somedays, I'm fine. I would say that using the doctors scale, I am pretty much always at 2 but that's nothing all things considered. Occasionally, the pain gets up to a 7- maybe higher, and that sucks, but I deal with it. I had a disgusting scab on the side of my head from the brace that held my head in place during the surgery, that was awful. And it hurt a lot. It got infected and took 2 rounds of antibiotics to clear it up, but it's finally gone so that's one less thing to worry about. 

My birthday was on July 21st. I had a seizure that day, because my body knows how to party. I've had a few more since then but they haven't been that bad. They've been quick 1-2 minute "did I actually have a seizure?" sort of things. 

I have been stage managing at the theatre I used to act at (before my memory decided to suck). Josh and Becky (my co-parents) are in this show. I don't think either of them have actually experienced my seizures yet. I help Becky with her quick changes during this show- she is amazing in this show, you guys. It's "Legally Blonde: The Musical" and she is the cutest Elle in the world.  Anyway, I go to help her with the quick change, and then next thing I know, I'm in the dressing room. Thank goodness one of my best friends and "certified Katiesitters", Christina, is also in the play, she took care of me and got me my medication. Randy happened to be watching the play that night. So at least I had my seizure the night my husband was in the audience, right?  According to Becky and the other stage manager, I went down to take off Becky's shoe, and I just didn't come back up. Becky noticed I was not myself, told the other stage manager I needed her, because poor Becky had to then go on stage after seeing me shut down like that. Our stage managing team and another actor took care of me and got me to the dressing room and to Christina, and that's when I came to. I know that I missed about 15 minutes. When the stage manager was checking on me, she said I was like a shut down robot. She would say "Are you ok?" And I would repeat it. Things like that. So THAT is officially a seizure. No doubt about that one.

I had an appointment with my neurologist the other day. We went over all of this. All of the "was that a seizures" and that one big one. And how frustrated I am, but I know the surgery wasn't a miracle. I know it wasn't supposed to be an instant fix. She reminded us that it is still early. And that seizures as I heal are OK and totally acceptable. She read back the report from right before my surgery and how many auras I was having a day, and how many seizures I had a week and then said "You've had 4 seizures since June and it's still early." So... when she puts it like that, it's hard to be discouraged. The pain sucks and it's frustrating and she understands that. 

We are going to work on the medication adjustments and see if that helps with the seizures. For the next year, the medications will be the focus. I'm OK with that if that means someday maybe there will be no medications and no more seizures. 

We will see what the year brings. I struggle with the fact that I am still having seizures but my doctor made me feel much better about it. I still struggle with the fact that I can't drive- I can't wait until the day that I can just go run my errands when I need to run them. I think that's why it hits me harder sometimes.  But it's ok. I am on the way to healing, and that's what I need to remember. 

Side bar:
I was recently a guest on a podcast. Please check it out... And check out his other episodes. He's great. 
Are We Okay?