“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.

“We must be willing to let go of the life we’ve planned, so as to have the life that is waiting for us.” - Joseph Campbell

I think that's something I can finally do. 

A few weeks ago, Randy and I got tattoos. Which is something I never thought Randy would do. But I had already decided that I was going to get an Epilepsy Awareness tattoo and asked him if he would get one with me, and he said yes. So we went. And I love them. They are awesome. I love him! He's so amazing. 

He chose to go with the Epilepsy Awareness Ribbon and to have it tattered. There's no reason for it to be perfect, this hasn't been an easy battle for any of us. 
I wanted a brain in mine, and went with "Carpe Diem" which for those of you unfamiliar with it, it means "Seize the Day"... I had to. I wanted something to remind myself to live in the moment and not constantly throw myself a pity party and the pun was just too good to pass up. 

Twenty days until attempt number two. I have a lot going on in my head right now. 

I’m terrified all over again, like I was for the first surgery, but this time it’s worse. I have a million new fears. The first time around, I was scared because it was “Oh no, something could go wrong.” But then something DID go wrong… so now it’s “What if something goes wrong AGAIN?” Or, even worse, “What if it goes wrong and they don’t stop in time?”

I keep trying to stay positive. As I’ve mentioned before, I’m usually a disgustingly positive person. I tend to spit out rainbows and butterflies and annoy people with my optimism… the other day, my co-parent actually got on my case for being too pessimistic which is not an issue I usually have. But that has been me lately. It’s just hard to see the light at the end of everything right now. 

I have tried to keep myself occupied and my thoughts on other things. I recently got back into theatre. I miss being on stage more than I can describe, but since my brain won’t memorize lines, as an attempt to "seize the day" I decided to volunteer to help behind the scenes. My friend is directing “Legally Blonde: The Musical” and I told him if he was cool with me helping before the surgery and then being MIA for the chunk of time during the surgery and recovery then I would be back in time (if things go like they’re supposed to this time) for tech week and the show open. He said “Cool. Auditions are at 6, see you tonight.” So, I’ve been having fun with that, and staying busy. It’s great to have something to focus my nervous energy on. 

I still have people asking me about my seizures- asking me to describe them. How do I know I had one? I just do, take my word for it. I feel like I entered a time warp. I just lost 2 minutes, 5 minutes, 10 minutes, whatever. I lost some weird amount of time and have no idea wtf happened. I’m going to say I had a seizure. I spend a lot of my time during the day watching re-runs of Friends and I do this because it’s safe. I know Friends backwards and forwards, so if I have a seizure, I KNOW. If they were in the middle of their trivia game and Ross asked who the TV guide gets sent to and then Monica is screaming “That’s not even a word!”, I know I missed SIGNIFICANT amounts of dialogue and the boys lightning round in-between those lines. Sometimes I’m not even watching the show, I just have it on as background noise but it helps me keep track of what’s going on, so if I feel an aura coming on, I can turn to the TV and focus on it and see if I lose track of the show. Seems silly, yes, but it works. I know it makes me seem lazy when you find out I watch a lot of TV in the afternoon and I can’t drive myself anywhere, and that’s fine, you can think I’m lazy and feel sorry for me, but I’m stronger than you will ever know. I fight every day. I want to feel better, I have almost forgotten what normal feels like, and I can’t WAIT to feel like myself again. 

People who haven’t seen me have a seizure don’t get it. One of my best friends finally (although I hate using the word “finally”)… RECENTLY, saw me have a seizure, and now she’s like “OK, now I know what to expect when you have one. Now I have seen what to do when you have one. And I think I can handle it, can we have a girls night out?” And we got pedicures and it was great. I think before you see it, it can be weird to hear about and not know what to expect. Sure you might see other people have seizures, you might see other people have other kinds of seizures, but everyone is different. I don’t know what I would do if I saw someone have a seizure. I would probably freak out to be honest. But she’s seen me have quite a few now and we were talking about them and I was telling her about when I first starting having them and my family didn’t know how to react and how to respond and they would almost gather around me and all start talking to me, trying to get me to come around…. Imagine your family, sitting around your bed, talking to you, trying to wake you up in the morning. Isn’t that delightful? Lol I don’t know about you, but I’m NOT a morning person. So I would always come out of my seizure just super pissed off. I didn’t know what year it was or what the hell was going on or why they were talking to me, and please get out of my hula hoop- thanks. 

My friend almost died laughing. She said she had never thought of it that way. 

Time passes for those of you watching the seizure. Time doesn’t pass for me. So I come to, and you’re all telling me it’s been 5 minutes and how do I feel, and all I’m thinking is “Where did you all come from?” Because I was talking to my son and POOF! He turned into 5 other people…. Think about how weird that is.

Twenty days until attempt number two…

And I am terrified.

But I am a fighter. 

And I am trying my best to stay positive. Despite EVERYTHING in my body trying to get me to be negative and to run away. 

I am going to do this. It’s going to work. And I am going to be seizure free dammit. 

I am sick of waking up confused. I am tired of being sick. 

…4 days Seizure Free… 

“Hope is the last thing a person does before they are defeated.” ― Henry Rollins

I had my surgery. 

The days leading up to it, I lost the fear. I was no longer terrified. I had a party, an "epilepsy sucks" party... I invited my friends and family and we celebrated the fact that I was getting surgery and that I was "kicking those seizures in the butt!" as my son said. And it was overwhelming to see how many people came to support me. It was amazing to feel that much love. And I was no longer scared. I was hopeful. And I was ready.

I went to the hospital early that morning. I think we checked in at like 5:15 AM or something ridiculous like that- it could have been earlier than that. All I know is we woke up at 4 something, and were at the hospital really early. I was taken away from everyone to get weighed and changed into my gown and then after I was settled into the bed and answered the standard hospital questions "Name, birthday, allergies" all of that, the nurse, Julie, told me I could have visitors come back two at a time. She said "You have four people in the waiting area, don't you? Your husband, your sister, and your parents." And I just sat there, stunned. This was NOT the lady that called me back, and she was nowhere near me when I was in the waiting area. She laughed and said "I just walked by them and saw someone with your face and thought 'That has to be my patients sister', is she your twin?" 
My poor sister.... We haven't gotten that in a long time. She is 4 1/2 years younger than I am, and I looked like complete hell that morning.

We discussed why I was having the surgery and how I can't wait to get my life back to normal. I can't wait to take baths and drive my kids to their practices and run errands on my own. And do just normal, simple things. I can't wait to just read a book and remember what I read. Just live life and I told her I felt so good about the surgery and my family was sitting out there, so nervous and scared and I wasn't scared anymore and I think that made them more scared. So she said "Which two do you want to see first?" And I laughed and told her that's a terrible decision to have to make, she agreed and told me SHE decided she is sending my parents back first. 

My parents came in and we talked for a while and then they sent Randy and Samantha back. While they were back, the anesthesiologist came back- that guy was delightful. And he put me in an even better mood. 

As it got closer to my surgery time, they said everyone could come back and visit. So my parents, Randy, Samantha, and my aunts who drove up for the surgery came back- that's right,  at this point, I had a fan club- and my brother in law was due to get up there after the surgery.  We made jokes about my lovely collection of hospital bracelets. I had the usual bracelet with my name and everything, the allergy alert bracelet, the latex allergy alert, and then because of my epilepsy she gave me a "Fall risk" bracelet (which I really just need in my every day life, epilepsy or not). 

My delightful anesthesiologist came back, this time with a second anesthesiologist  and they said it was time to go. Everyone said their goodbyes, but they let my mom and Randy stick around and said they could come with me while I was being taken away. I remember the delightful one saying "She's not even going to remember you guys ever said goodbye" and kind of laughing about it, my arm got cold... and there you go.

Then I was being wheeled into the recovery room and my doctor was saying "Katie... Katie are you with us now? We had to stop the surgery. Your brain hemorrhaged and we had to stop. Are you with us?" And I just stared at him. He asked again, "Katie?" I said "I don't understand. You stopped?"
He explained it again. And I started shivering for some reason. They asked if I was cold. I said I guessed I was, I didn't really know. So they gave me a warm blanket and oxygen and I fell asleep again. 

When I woke up I was in the recovery area. I got the attention of a nurse. I asked her if she could help me. She came over and asked what I needed. I said, "They said my brain hemorrhaged. I don't understand. They didn't finish the surgery... So what does that mean? My brain. What happened?" And she said "Yes, that's right. That had to abort the procedure." And I said again "But what does that mean?" And just started crying. 

My doctors came in pretty soon after that and tried to talk to me again. I didn't really wrap my head around what happened. I think I asked him about 4 times if he "fixed me" and he kept telling me that the procedure didn't get finished. Once he saw I was awake enough, I was taken to my room. And I got to see my family, and I bawled my face off. 

Hearing their side of it was awful. They were watching a board that showed the progress of my surgery, they would know when I was out and wouldn't have to wait for someone to tell them... And when they saw I was out, they thought it was fast, but they were ready for the doctor to come and tell them how it went. The never expected it to be bad news. The doctor didn't expect it to be bad news. This threw everyone off. They sat there for 2 hours waiting to hear if I was OK... they had no idea if I was stable or if I would be OK or what was going on. So I kept everyone on their toes. I can't imagine being told that someone I loved just had a hemorrhage and then like "But we won't know more until they wake up, so sit tight" and then just.. sitting there.

Once they knew I was awake and stable, the doctor came out and told them I was fine and I was going to be wheeled down the hall right by them and they could say hello but that I didn't know the outcome of the surgery yet and I've been told their hearts all just broke for me because they all knew how much I wanted "to be fixed". I just want my life back. I have absolutely no recollection of talking to them or seeing them. This all happened right before I went into the recovery area- right before the doctor told me about the surgery results. 

To add salt to the wound, it turns out they were 3-4 minutes away from finishing the surgery when the hemorrhage started.  We were SO close. 

Tomorrow marks 2 weeks since the surgery. The staples have been removed. I am still in a lot of pain. I am completely exhausted. It still hurts to bend over because of the pressure in my head due to the hemorrhage. I am just... I feel useless. Worse than before when I was dealing with just the epilepsy. So far, I have had two seizures and two auras that haven't turned into anything but they have been awful all the same. I was given a lecture by my neurosurgeon about taking the painkillers he prescribed because it said "take 1-2" so I'd take 1 even if it hurt a lot and he said "Take 2, you just had brain surgery and a hemorrhage. It's OK if you need 2, take 2. That's fine, you should need painkillers. You need to take painkillers and you need to get sleep and if the pain is keeping you awake, then it's a problem." so it's also possible that the pain was causing the seizures before because that's just the way life works.

I was completely defeated. I cried I think every day for the first 4-5 days after the surgery. I cried because I was happy to see my kids, I cried because I hurt, I cried because I was telling someone my story, I cried because someone asked how the surgery went, I cried just because. It was awful. I was looking forward to coming out of this surgery stronger and better than before and I came out of it more broken. But at the same time, I realize there was a moment where I could have died and I am so incredibly grateful to be here to share my story and to see my kids and for everything else. My doctor saw the problem, acknowledged the problem, and stopped the surgery. Someone else might have been more in the "But we are almost done, let's just finish it really quick" mindset and who knows what may have happened. Sure, we like to think that doctors wouldn't do that, but WHO KNOWS?

I am here now. I am alive. And I am defeated but I am still grateful. 

I went back to the doctor on Thursday. (That's when he removed the staples and lectured me about the painkillers.) We discussed what happened and the next step. The theory is I just had a weak blood vessel and it was small, that's why it didn't show up on any pre-op MRI or scans. And when they went in for the surgery, even though the surgery is minimally invasive, it caused the weak vessel to burst and bleed.  

We are choosing to look at this as a weird sort of blessing. Because this vessel was sitting up there, hiding, and wasn't showing itself on any of the imaging I was having done there were so many other times it could have chosen to throw its little surprise party. I am SO glad it happened when I was in the presence of doctors, under an MRI machine so they could see exactly what was happening. Seizures can cause hemorrhages, so what if it chose to do that when I was sitting at home playing with the kids and had a seizure and I just didn't snap out of the seizure? What if, because I am an accident prone spaz, I knocked my head on something and that caused it to hemorrhage? I keep thinking of all of the "what if" situations, which I know you aren't supposed to do, but how do you NOT do that when you are told that you could have died? It's pretty hard not to do that. 

I'm still trying to wrap my head around everything. 

After talking to the doctor and hearing the theories about why it happened, and that it's normal to be in this much pain and to be this exhausted and to feel the way that I feel, we have decided to try it again. I was scared the first few days after my surgery, but I can't keep living with seizures. I just can't. And he seems confident that this was a fluke and while nothing is ever 100%, he seems confident enough. I wish we could just go for it right now while I'm still healing and in pain and it's not like "YAY I FEEL BETTER!" and then I go back in but unfortunately, we have to wait for the hemorrhage to totally heal and dissipate. So far, everything looks good and my vitals are good. He told me "We have a surgery date in August" and he saw how sad I was because August is so far away and said "There is a date in June and it's 50/50 that one is going to get cancelled. If it does, that one is yours." Then he grabbed my hand and told me that I am brave and strong and to hang on because we are going to get though this and we are going to fix it. Two hours after leaving his office, I got a phone call, I have surgery scheduled for June 27. 

I still feel defeated. But, and maybe this is just because I'm the kind of person who always sees the light no matter the situation,  I still have a little bit of hope. I'm a huge believer in things happening for a reason, and I'm choosing to believe that this all happened because that vessel could have done some serious damage- or killed me- in some other setting. So if I have to live with seizures for a few more months, I guess I'll just deal with it... because at least I am living, right?

The countdown is back on. 77 days until my next attempt at surgery. 1 day since my last seizure. 

What a journey it's been so far.... 

1 in 26 of Us

http://talkaboutit.org/jj-abrams

1 in 26 people has Epilepsy. Did you know that? 1 in 26. That means someone you walked by today at work, in the store, drove by on the street... Someone your kid played with at school. 1 in 26. 

We need to talk about it. 

Someone my husband knows was recently affected by epilepsy. Someone in their family was taken to the hospital because they had a seizure and they've had a few more since. And this person has asked Randy for advice, and asked him a few questions, and I am SO glad that Randy has been able to help him and answer some of the questions. I remember when we were first going through everything and it was so scary. I was lucky- a friend from high school reached out to me, he has had epilepsy for a long time and he answered a lot of my questions and gave me hope. And it helped me. He also sent me a list of celebrities that have epilepsy and that helped. Seeing successful people that have it calmed me down SO much. 

1 in 26. 

I went to Disneyland over the weekend. I wonder how many people I walked by were also dealing with the fear I was dealing with- 
-"Will this ride cause a seizure?"
-"This crowd is freaking me out, I hope I don't have a seizure." 
-"Should I watch these fireworks?" 
-"I'm getting tired, maybe I should go back and rest so I don't have a seizure."
I don't know my triggers- not really. So I never really know what might set me off. Luckily, I managed to make it through our trip without having any seizures. I don't know how because I was exhausted and overwhelmed but maybe the universe decided to throw me a bone because my surgery is coming up and I needed to have a fun weekend. 

Since being diagnosed with epilepsy, I have been mostly open about it. At first, because of my dumb doctors advice, I didn't tell people, but then I realized in order for people to help me if I seize I need to tell them. (I also realized that doctor was an idiot.)  Once I started telling people, whether it was just as simple as telling the receptionist at the pediatrician "Can we make the appointment a different time? I can't drive the kids anymore, I've been diagnosed with epilepsy so I need to make it for a time when someone else can drive us." and then finding out that her brother has it too, or finding out that someone's son has it when I apologize for being late because I had to wait for a ride (those were just generic examples, not true stories) or -and this one is true- having to call the dentist back and apologize and then ask for a repeat of our discussion, then explain that you have epilepsy and say "I had a seizure towards the end of our conversation and I'm not sure what was said. I know that I called you and explained what the appointment request was for, and I see that I started writing but then I have no idea what happened." She was sweet, checked on me, made sure I was OK, said that her friend is epileptic, and then we replayed the conversation and she sent me an email verification of everything. 

1 in 26. 

A friend recently told me that his coworker's brother was recently put on meds for his epilepsy. He isn't old enough to get surgery. They want to wait until his brain is done forming. (Brains don't reach full maturity until age 25.) He will be on meds until he reaches the proper surgery age and then he will most likely get the same surgery I am getting.

1 in 26.

It is so weird how often I hear these stories now. "My fill-in-the-blank has epilepsy" or sometimes it's just that they had one seizure. It's still a relatable thing. Or "My brother had surgery for that" or something along those lines. 

1 in 26.

I go in 8 days for my surgery. Terrified is no longer enough to describe how I feel. I don't know a word that is five levels beyond that with anxious and nauseated mixed in though. Whatever word that is, that's how I feel. I'm trying to keep my focus on something else though, and I just want to help spread the word, it needs to be talked about. 

Epilepsy awareness. 
1 in 26. 
65 million people.
Talk about it.