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?

Certificate of Thinkology

Well... It happened. 

I had the surgery. Again. 

The morning went down the same as the last time. I arrived at 5 AM and checked in. I changed into the gown, I waited for my doctors as I got hooked up to the IVs and got prepared for the surgery. The doctors all took turns coming over and talking to me. They told me "We have done this before, so you know the routine. We are just waiting for the MRI and everything to get ready and we will take you down to the room."

The anesthesiologist finally came (around 730 AM) and he said instead of starting "The Juice" as he put it, and then wheeling me down the to MRI suite, he was going to wheel me down and then start the process of knocking me out once I was down there. So I actually got to meet a good part of the team this time. Not that I remember anyone- I know someone was named Jeff and someone was named Adam, but I can't tell you what anyone looked like. And I know there was a girl, and she gave me warm blankets.

Once they started "The Juice", my left arm started hurting. Normally, when I have had anesthesia in the past, I have felt a cold feeling, or a tingly feeling, but this HURT. A painful horrible, every muscle in my arm was being punched sort of pain, it was horrible. And I yelling at the anesthesiologist that my arm hurt, and he said he knew and I remembered being pissed off about it. And then yelling at him about that. And I believe I was just kind of angry and rude before I passed out. 

When I woke up in the recovery room, I immediately went to the last time I was in that situation. Last time, I was told the surgery had to be aborted because I hemorrhaged. So I wake up, I realize I am in the recovery room, so the surgery is over. My arm no longer hurts, but my head hurts, I'm cold, and I don't know if it was successful or not. I immediately start crying. From fear, from pain, from everything. I'm overwhelmed from everything. And crying is a normal reaction when waking up from surgery anyway, but it was all so much. The nurse came over with a warm blanket. She asked me if I was in pain, I said yes. And I said "Did it work?" And the poor thing was completely confused. She repeated "Did it work?" And I am mumbly and weird because I'm just waking up and I'm crying. And I said "Did it work? It didn't work last time. Last time I hemorrhaged and they didn't fix it. Did they fix it? Did it work?" And she said "Oh yes. Yes. It was a successful surgery." And I start to bawl. She asks my pain level. Which is not why I'm crying but hell yes, my pain is at a 10, I have holes in my head. And I continue to ask every nurse that walks by if the surgery worked. And I wasn't really satisfied with anyone's answer until I saw my family and my doctors. 

I was in and out of sleep. And I think I heard my dad's voice first. And I opened my eyes and I asked them "Did it work? Did they get it?" And my dad said "Look at the clock. I hope they got it." And it was 7something PM. I found out I was in surgery for 9+ hours. But the doctors think they got everything they needed to get. 

Once I was taken to my room, I noticed my right hand hurt like hell. There were some weird blisters on it, also one on my left knee. I have some weird pain on my left thigh and just a variety of bruises on my body. I had some last time too- not blisters, but bruises and sore spots. They weren't THIS bad, because the surgery wasn't this long, but I am not surprised to be sore in spots other than my head. You're basically swaddled like a baby and then secured to a table, and then flipped over so they can reach the back of your head... and I was like that for 9 hours. I think my hand and knee were against the buckles or something, so they ended up with blisters and the other sore spots are just from the restraints or something. 

I am finally at a point where I don't have to take pain killer every 3-4 hours, but I still have to take it a couple of times a day. The staples came out on July 9th. I go back for my post-op MRI and to see what my neurosurgeon has to say on July 26th. I still have pain... and I have had a few dizzy spells. And sneezing hurts my head more than anything. BUT 19 days since the surgery, 19 days seizure free. I think the Wizard came through on his promise and gave me a new brain. 

I need a health care plan that covers the depression and anxiety caused by trying to understand my health care plan

That was on an e-card. And it is just SO fitting.

This is a venting sort of blog.

At the beginning of May, we received word that our insurance company and Stanford ended their contract. Or maybe that is when I learned about it. I can't remember. Either my mom and Randy knew about it a few days before I did, or my mom heard it might happen, or something. People kept trying to protect me from things. So my insurance and Stanford, not working together anymore. So where did that leave me and my surgery? I wasn't sure. The only logical thing there was left to do, was to have a COMPLETE meltdown. Have I mentioned that these meds make me a hormonal mess? So I cried for a while and we tried to figure out what it all meant.

Finally, my mom and Randy talked me down. And my mom said it's kind of like cable companies and networks and usually they go through these things and then they say "Just kidding, we are getting along now"... which whatever, ok, so if you are DirectTV and you say you aren't showing the Dodgers games anymore, fine, you pissed off A LOT of people but when you are an INSURANCE COMPANY and A HOSPITAL you are messing with SICK PEOPLE and PREGNANT LADIES and DYING PEOPLE and THIS IS NOT OK.

So....  we find out, the next week, that we can fill out these other papers to get my care extended for 180 days with Stanford since my surgery was already scheduled. So I filled out all of the papers and took care of everything and it was super annoying and a huge pain in the ass and whatever, but it was taken care of and I was told not to worry about it. I wasn't really sure what that meant for my post-op care, but at that point, as long as the surgery was taken care of, I was happy.

Then, last weekend, Randy shows me an email that says Stanford and our insurance have come to an agreement and renewed everything and everything is back on track! And I'm so relieved. That means the post-op will be handled and everything is going to be great. And then he says "Your paperwork for the surgery had been denied. I was in the middle of appealing it. But now we don't have to worry about it."

And I just looked at him.

I had so many emotions going through my body at that point. I was happy. I was relieved. I was shocked. Angry. Appalled. Upset. How could they deny it? Who the hell are they to decide? The doctor said I need it, so give me the damn surgery! And what sort of crazy ass man keeps that sort of burden to himself? He was carrying this weight on his shoulders and keeping it to himself hoping it would get appealed and if it didn't, then what? He's insane. I love him to death. He's amazing. He is incredible. And I'm so lucky to have him and I love him. And I just... I don't know. I love him. That's all I can say. I love him. That stupid, crazy man.

AND THEN- in the mail, we get a letter from Stanford, or the insurance, I can't remember at this point, saying the surgery has been approved. So now that everything is all better with the contract, everything is official and wonderful and better. AND WHAT THE HELL?

AGAIN, let's remember, these are sick people they are messing with. I am just so disgusted with the whole healthcare insurance situation right now that I had to vent about it for a minute. It's unbelievable. That's all.