For You, Sara

Over 7,500 views. Thank you all.

I want to dedicate this post to my wife Sara. She has been through a lot with me, not just with my Epilepsy, but my growing to the man I am today.

In my wedding vows, I wrote that I fell in love with her twice. Once while we were in college, and the other time was when I lost my memory just after my first couple of seizures. I didn't know her during this time but she was constantly by my side. It wasn't long, just a couple of days of her next to my hospital bed. I remember not knowing her; she was so beautiful. I was even embarrassed a few times in the hospital because I was naked under my gown and I didn't want her to see!

Since my first seizure, she has seen the best and the absolute worst of me, but she's confidently been by my side fighting for me. I needed this because my brain has slowed down quite a bit since having seizures. My memory is shit, and I'm afraid to go out in public without her in case I have a seizure. I feel like she is the only voice that can really interpret my language.

The truth is, Sara, I didn't just fall in love with you twice. I fall in love with you everyday. When you walk in the door, when I get a text from you, or when you call to check up on me. You'll never understand how much my heart beats for you.

I don't know why today, of all days, I decided to write this, but I've been doing a lot of thinking while at home alone. I look around and all I see are memories that we have made. This makes me think of all the memories we'll make in the future.

We're going to beat this, and I'm so grateful that when the dust finally settles, you'll be there for me to embrace. I haven't made your life easy, but I can assure you that I will make your life meaningful. Our story will be remembered, but before that all happens, I want you to know that you've made my life worth living.

When I see you tonight, I'll fall in love with you again. I promise.

Conquering Fear

I'm here to tell you that I'm afraid. I'll admit it. I have been all my life. I over-think things until they start to eat away at me. I've done this for jobs, relationships, moving away from home, and now... of course, Epilepsy.

I've been given a lot of medication to help stop my fear of my current life, but you really can't prescribe medications to curb a primal urge to fear. I've also been given different techniques, like meditation and breathing to help the tension. None of these will work 100%. And they haven't.

There have been other times in my life where I should've been afraid, but wasn't. Seizures don't scare me, but I know that they scare those around me. Spinal taps, shots, infusions, surgeries... none of them have scared me. If anything I was a nervous-like excitement. An excitement that maybe this next trick will be the one to really stop my seizures and end the period of my life where I had Epilepsy.

Pain doesn't scare me. Death doesn't scare me. I feel as though I've come so close already, and to see my friends and family gather around me like they did makes me confident that I'll never die alone.

Maybe that's what I'm afraid of... being alone through all of this. But I'm not, and I just have to keep of telling myself that while I feel these poisonous medications make their way into my blood. I have to keep telling myself that when I'm in a hospital bed, I can look over and see Sara or a member of my family there to support me, to care for me.

I never thought that this was going to be the direction my life was going to take. But it happened and now I have to use every bit of strength inside of me to keep my head up straight and my tear ducts dry.

I suffer from a condition called Epilepsy, but I struggle most with fear. There's very little I can do about the seizures, but a lot I can do to be sure fear doesn't completely destroy me. And while I'm conquering fear everyday I can look beside me and know that I'm not doing it alone.

Smile Wider

I sit here with my dated iPod and iHome playing while I write. I usually listen to what I call "thinking" music; the same music I would listen to while I was working as a graphic designer. I would sit at my desk with a huge pair of headphones and churn out composition after composition. It was tedious but fun. I miss it.

This past week was pure hell. Not only did I have the same psychological issues that I've been describing for weeks, but seizures as well. I'm going to dig deep and try to explain how the seizures felt. I wish those close to me could feel them just once in a controlled environment because my words will never be enough.

I had a medication mix-up at the pharmacy on Monday of last week... it happens to the best of us. This started a chain reaction. Not only did I feel very aggressive, but I was also having auras. Eventually, the auras led to seizures; the kind of seizures I've tried to explain to everyone. I remember the one I had at a restaurant vividly, but the one I had at home stuck with me the most.

I remember laying in bed while Sara was out in the living room watching TV, as I called out her name. After that I just remember fighting the seizure, almost wrestling with it. Sara kept telling me to relax, but I couldn't understand her. My head started to raise and lower as I fought with no luck.

***

This is a two day post. I guess I just needed more time to process what is actually happening. I had another one of these seizures earlier today, but this time I was alone. When I first felt the aura, I quickly tried to remember what Sara would do if she were here. I sat down on the couch and I could feel my head turning to the right. I had no control of this. The right side of my body went numb as I was swiping the VNS magnet over the device in my left chest area. It ended several minutes later, and I thought it was safe to get up from the couch, but I still felt as though I was still feeling the effects of the seizure. I wanted to find a way to pause the show I was watching... I was watching the news. There's no way to pause it.

Once I regained full consciousness, I made my way to the kitchen and looked through all of my medication, not sure which one was Ativan. I got frustrated, but I knew I had a dose in a little pill box that I carry around with me everywhere. I knew for sure that was Ativan. I took it and fell asleep almost instantly. That's how I know that the seizure was bad. I can take Ativan any time during the day and just feel loopy, but after a seizure it's like a knockout punch.

I do a little test when I'm at home after a seizure if I'm alone. I look into the mirror and try to smile wide because some seizures paralyze parts of my face. I did it before taking the Ativan, and I smiled successfully as far as I could see.

I looked at my face, and I looked so tired. I think about this all the time. If you see pictures of me several years ago, even after I started having seizures, I looked normal. Inside I was tired, but it never really was reflected on my face. I look older and weaker. I'm not sure if there's anything I can do to reverse this, but hopefully someday I'll be able to look in the mirror and see myself happy and vibrant. Right now, I can only see a man who thinks too much about things too little. I work myself up to the point that I'm no longer the Jeremy everyone used to know. I'm just a tired man. A man who is constantly trying to find something to make him really smile wide.

The Dark Side

No, the title is not in reference to Star Wars, but I may have gotten your attention!

I'm talking about psychology and epilepsy. Apparently, it's fairly common to experience a darker side of your personality with epilepsy and epilepsy medications. Not just epilepsy medications, either. Just watch any ad for a medication on TV, they'll all warn the viewer of possible side effects, one always being mood swings or depression. They're rare, but someone like me has to have had one or more of these side effects for them to have to say those things in their advertisement.

Right now I'm experienced the "grinding gears" feeling in my chest, I've written about it before, look below. The same feelings, and just about as strong as they were when I was admitted to the hospital about a month ago. I don't want to go through that again, plus I know that there's nothing the hospital can really do. I just have to take an emergency Ativan and ride this pain out. Easier said than done.

I'm having a hard time typing because my hands are shaking, and just thinking of a few minor failures in my life can send me down a spiral. This is partly why I'm writing... to distract my brain, to make me think of language and grammar instead of some of the horrors of my past.

That was the problem when I went to the ER. I couldn't distract myself. I just kept pouring over the events in my life that, let's just say, weren't very pretty. I don't know why I go to these places, I wish that the medications I'm taking made me shoot rainbows out of my ass, but no... they only show the dark side.

Here I Am, Awake.

I'm supposed to be asleep, but Felbatol isn't letting me. I have a huge doctor"s appointment tomorrow that I've been thinking about while laying in bed. The thoughts started out harmless, just wispily getting my thoughts together before I nod off to sleep. Then, I started to really dwell on exactly what I want to say to him. In detail. Angrily. Mostly about my last experience in the hospital, and what Felbatol is doing to my psyche.

I just took some Ativan so I can sleep, so I'm writing this while I wait for it's effects to take hold. There's not a whole lot I want to say because I'm trying to relax. Have a good day everyone. Please don't take tomorrow for granted.

Goodnight.

Why I'm Not a Dancer

I can remember a time when I could dance. Not well, but just have the confidence to stand in front of people and move around in a way that it looked something like dancing!

I'm not talking about slow-dancing, that's relatively easy. I'm talking about really standing up to a good song and letting my freak flag fly. I can remember as an RA in college we would put on Daft Punk and dance around the office during late nights. Just being young and silly.

I enjoy music a lot... I mean A LOT! Hell, I played drums in two church bands growing up. Now I just enjoy it to myself. Sara and I talk about music quite a bit and she knows this fact. I grew up with my Dad blasting oldies rock in the garage for all the neighbors to hear as he worked on cars, and my Mom singing to the latest records on the car radio... full volume!

I remember when I was 16 or 17, I went to a No Doubt/Weezer concert in Milwaukee with friends from high school. I danced up and down the steps and in my seat. But we went to a No Doubt concert recently, and all I did was stand and try to take the whole experience in. I probably looked like I wasn't having a good time, but in actuality it was one of the great musical memories of my life.

So why this change? Why do I sit and scowl as I hear good music and watch everyone else have fun and dance?

Some would say that it has to do with the fact that alcohol isn't involved as much anymore, and I'd agree to a certain degree. But if I really think deep I can remember having confidence that soared through the roof when it came to music, I just didn't give a shit during my late high school and college years. Who really does?

I think back to when I started to really listen to MY music. It was in my formative years; a time where I just started to figure out that I was an individual. This scared the hell out of me. When I first started to listen to my own bands, and started to form my own opinions about the world, I became very depressed. There were times that I would listen to the same CD on repeat while I sat on the floor in my closet, sometimes falling asleep.

Music is therapy to me. Now, I'm not on the floor of my closet, but rather sitting in a hospital room listening to my iPod until I fall asleep. There's a connection there if you can see it. History repeating itself.

If this is true then there will be a time where I'm dancing at a concert rather than just standing and listening. There'll be a time where music effects my muscles and not just my emotions.

Someday please come soon.

Like Gears in my Chest

Below is a post that I started writing on October 15th just before I agreed to go to the emergency room to seek help for the negative reaction to Felbatol (a seizure med I'm trying out).

"Like gears turning and grinding inside my chest.

That's how I've been describing what this new mix of medicine feels like at the current dose. The gears turn and I see in great detail the past violence in my life and I try to talk myself out of any future violence to my body. I just can't describe it beyond that. 

The gears are currently turning as I type and I'm now waiting for the Ativan to reach my blood and put me to sleep."

After that I went to our local ER, they shot me with a double-dose of Ativan, but it wasn't working. The doctors there decided that it would be best if I went to the Northwestern Memorial ER downtown because that's where both my Neurology doctors and Psychiatrist are located.

I was immediately whisked away to the "Crisis" area of the ER. Basically the part of the ER where  they put people who hear voices, or are otherwise completely crazy. Sorry to be so harsh, but it was my experience. We had a woman pacing while on her cellphone, talking about how the German mafia was after her, a man who apparently tried to jump off the Michigan Ave. bridge in Chicago, and a nice little asian girl that didn't want to take off her Ray-Ban sunglasses. God only knows what she was there for.

I was there because of a bad reaction to a seizure medication. Everyone knew that but I still had to be locked in with these types of scary people. I was there for 20 hours before my Neurologist swooped in at the last minute and the found a bed for me in the Epilepsy Monitoring Unit instead of the Psych Ward. 

Once in my room, I had to have a "sitter" because the original reason I was there was because of psychological reasons. By the time I was upstairs, the effects of the medicine had subsided, and I just felt tired.

The first night in the Epilepsy Monitoring Unit I had a seizure, but I wasn't scheduled to be hooked up to any machines until the next day. Of course, I didn't have any seizures while being monitored... seems to happen every time I'm there. There's just not a lot to stress about in the hospital room, so that usually equals no seizures.

Anyway, I was released on a lower dose of the medication that was making me feel "agitated," (to put it lightly). That night, on the way from home I had a seizure, and I've had four more since. It sounds bad, but I said it in the ER, I'd rather have a seizure than feel what I was feeling those days on the higher dose of Felbatol.

Two days after being released, I saw my psychiatrist and talk with him and made a plan. Then....... I tried to get in the car, I tripped and broke my ankle! 

One would think that I would be in bad spirits, but honestly being on a lower dose of Felbatol has increased my ability to stay positive.

Now I'm just hobbling around my apartment, but the most important part of my hobbling is that I'm doing it with a smile.

Me or Him?

I'm taking a new medication called Felbatol. Since starting it, I'm beginning to feel a lot more of the emotional side effects that I thought I moved past. It's a feeling where I'm myself in the middle of the normal, rational Jeremy, and the Jeremy that only sees red.

The rational side of me has been winning lately because I can show via experience what happens when the Red Jeremy takes control. In no exaggeration I remember a lot of blood, broken bones, screams, handcuffs, white rooms, and many sedatives.

These medications for Epilepsy are very strong, I cannot reiterate that enough. I'm in therapy, and I see a psychiatrist but I feel it's like infecting someone with the flu over and over, and just giving him Kleenex, wondering why the flu isn't going away.

(Seizure while writing. Aura + 10 seconds, nauseous. Took 2mg of Ativan.)

That's all I'm going to write.

One Month

On Friday, it'll be one month seizure-free. The last seizure was when I was already off Sabril and hadn't yet started Felbatol. I'm noticing some creepy side-effects of the new drug, but that's to be expected at this point. I'm not at my highest dose of Felbatol yet, that comes next week... 1200mg three times a day. It sounds like a lot because it is.

I'm hesitant to talk about the future because I get a little superstitious.

Ok. Here we go.

Ok. Here we go.

I started my new medication Felbatol. Everyone knows that these strong medications cause all sorts of initial side effects. I'm feeling them all. I also have orders for weekly blood tests. My first one is in a few hours.

My doctor decided to take me down on all my other medications. Because of this I've been walking around the house a nervous wreak. I've been preparing for (what I feel will be) a strong seizure. The last time I was taken down off my medication was at Mayo Clinic for an EEG. It took nearly a week for me to have a seizure, but when I finally did, it was one of the biggest I've ever had.

I'm preparing now. Writing notes around the house, and giving Sara as much information as I can about how I feel in case I'm unable to communicate later. It's like I'm preparing for a long trip, knowing I won't be in communication with anyone. It may sound like I'm being neurotic but all of my Epilepsy friends will certainly know this feeling. My preparations are going down to even the clothes that I'm wearing.

This is a big deal.

Clouds on a Summer Day

It rained all night last night. Today the clouds are still thick, and there are puddles of water everywhere. I walked Sara out to her car this morning; the air was muggy and still smelled like rain.

When I experience days like today they remind me of when I was a kid and I would go to a friends house to play. I remember the same smell in the air as we searched around for worms with sticks still wet from the rain. 

He had a huge wooden treehouse-like fort that his Dad built him. The wood would still be drying out as we made our way to the top of the fort to see the entire yard. Our pockets would be full of different toys and other things that we would call "weapons" even though we called them "treasures" around our Moms because we knew they would probably get mad. 

Our "weapons" were kept in an old shoe box. They were mostly sharped sticks taped to other sticks so the would look like mini swords. When we would go shopping with our Mom's, we would pick-up little pieces of plastic and junk to keep in our "weapon box" to be used in creating better swords. We kept the box outside by his Dad's workshop, next to the big fort.

One time we decided to make our little group of friends and siblings a club. I designed (go figure), a bunch of member cards with all of our names on them. I remember handing them out to everyone, except my best friend. As a joke, I told him that I didn't make one for him; he looked crushed before I pulled his extra special club card out from a different pocket. I still remember his face when I told him a didn't make one for him, and think about it to this day.

For some reason I remember the rainy days the most. Probably because those were the days that our play was most interrupted. Those were the days that we had to be the most creative in what we wanted to do with our day.

***

In a couple of hours Sara and I are going to make our way back down to the city for another appointment at Northwestern. This'll be my third appointment down there in three weeks. I'm getting sick of the cafeteria that I used to love so much. It's not that same food as what the patients get. It's actually pretty nice. Sara and my family would go get me "real food" from down there when I was admitted. Their cookies remind me of my time there the most; stuck in a bed for days and so happy to see Sara walk through the door with an oatmeal raisin cookie. Life can be pretty simple sometimes.

The doc is considering a new medication that is for seizures, but one of the side effects is weight loss. The other medications I'm on cause weight gain and it's been showing. He and I are nervous that my weight could lead to heart problems, not to mention worsen my diabetes. They're more worrisome than seizures at the moment. 

Of course there are other side effects. Two big ones being liver failure and some sort of anemia. I'll have to have a blood test every month or so. This seems all pretty routine to me. Sad but true.

Along with my doctor visit I have to get a bone density test. I was told that I should've gotten one a while ago. Sara knows why, it's slipped my mind. Maybe all the meds I've been taking over the years.

Today will be busy, and the next couple weeks will be scary. I'm nervous. 

Therapy and Side Effects

By now we all understand that Epilepsy is one long string of side effects. It's still a mystery as to why I started having seizures, but I know that the seizures themselves were a side effect of whatever else was going on in my body. So we decide to treat the "side effect seizures" with medications that cause all sorts of other strange, scary, and sometimes deadly side effects.

I'm in therapy. I'm there, not because of the seizures themselves, but because of the vast destruction that the medications treating them has left in their wake. What I've been finding is that any issue that I grew up with and may have held onto in my adult life (even unknowingly) is violently amplified.

Imagine, for example, I wasn't really good at playing baseball when I was a kid. Maybe I was picked on because I was so bad, and as an adult I held onto these bad memories. For most people these feelings would stay in the background, never surfacing again. One could say that those moments in my life built character and taught me lessons about life. Etc. Etc. Etc.

Now start having seizures and start taking these medications. Baseball becomes an epicenter of ALL the problems I had as a kid. All of the sudden I remember the feel of the baseball jersey on my skin during games, the sound of the ball hitting the glove, the crowd yelling, "easy out!" when I would come up to the plate, the feel of dirt in my eyes after sliding into a base, the voices of the boys who picked on me, and what kinds of things they would say. Then, I start to hate baseball in general. I never want to go to games, or watch them on TV. When I see a hat with a baseball logo it makes me sick. I'm so embarrassed that I was bad at baseball that I start to think about hurting myself. Maybe I daydream a little about what all of those boys would say if I were dead. Would I still be just an "easy out"? Everything is so real, and I can't understand why nobody else can see what I see.

This is an example of the kind of fight that goes on in my brain everyday. And it's because of those feelings that I'm on more medications to counteract the dangerous side effects of anti-epileptic drugs.

I fought going to therapy for years, but that was also a side effect of the medication... I've been known to be a stubborn person, but the stubbornness was amplified to the point where I would have all-out arguments about it. "Can't you see what I see? I don't need therapy!"

Now I see a psychologist to talk and work out my issues, and a psychiatrist for prescribing medciations. The psychiatrist works with my neurologist, so we're all on the same page as far as that goes.

To discover that deep, inner-issues are being forced to surface and amplified by medication is something I'm still working on. Epilepsy is not just a string of seizures... it's a character trait, it's a lifestyle, it's a prison.

Seizure Day

Thursday, July 24th, 2014. Seizure Day.

7:30am:
Wake up to Sara getting ready for work. I take off my apnea mask, rub my eyes and make my way to the kitchen.

7:45am:
Eating Cheerios, and a banana. The medication from the night before gives me "gut rot" so I need to drink a lot of fluids. Basically, what someone would do after a night of light drinking.

8:00am:
I'm watching the morning news as Sara leaves for work. I play on eBay, Facebook and Twitter, getting the handle on what I'm going to do today. I feel as though I'm a little pissed for no reason. Probably, from my last seizure. This will usually change when I have my next seizure, (Interictal Psychosis).

10:30am:
I'm ready to take my medicine:
Vimpat, 200mg
Lamictal: 300mg
Geodon: 60mg
Sabril: 500mg

11:00am:
I get ready for the day, shower. It's too hot for a bike ride, or a walk. I don't want to risk having a seizure, plus I have nowhere I want to go. I will probably have to stay in today. The medicine is kicking in. My lips are numb. It's probably time to lay down.

2:00pm:
Waking up from my nap a little groggy. I'm hungry again. I get up and make my way to the kitchen. I'm in the kitchen, but don't remember the walk from the bedroom. I note that in my seizure diary.

4:00pm:
Sara's coming home soon. I put on some music loud and give the apartment a "once over" cleaning.

5:30pm:
Sara's home, and she's getting ready for dinner with her friend in the city. She brought me tacos.

6:30pm:
I've eaten, and Sara's on her way to the city. I'm watching TV. I feel another little "twitch". I decide that it was nothing, and go back to playing on the iPad, and watching TV.

8:00pm:
I put down the iPad, and stare at the TV for just a second.

8:05pm:
I feel an aura, (a feeling normal people would pay to feel). The seizure is starting. I start smacking my lips and swallowing over and over. I notice that I've already taken out my VNS magnet and swiped it over my chest because I usually swipe with my right hand, then move it to my left hand because my right side goes completely numb during a seizure. Muscle memory.

8:06pm:
I feel my head turning to the right for no reason. I have no control of my body anymore.

8:15pm:
(*Notice that I've skipped 9 minutes. This means that I lost consciousness. A "Bad One," as I call them.) I'm awake again, still on the couch. The room looks so different as if I was in a stranger's house. I'm looking around, checking out every room. Almost a dream-like state. I wouldn't be able to tell you my name, or understand english if you were asking me questions.

8:17pm:
I decide that I need to get ready for bed for some reason. I need to turn off the TV and all of the lights, except I've forgotten how they turn off. I start unplugging the lights. This all seems perfectly logical to me. "I don't know why the lights and TV wouldn't come with an on/off switch."

8:25pm:
I've found my way to the bedroom where I lay down. Not to sleep, but just to lay. Still in a dream.

8:35pm:
I'm coming out of the "fog" and remember that I had a seizure. I'm still groggy, but I make my way around the house to plug in all of the lights and TV. I know that I have to take my medicine. I feel like I'm ok to remember how to do that:

Vimpat, 200mg

Lamictal: 300mg

Geodon: 60mg

Sabril: 500mg

Phenobarbital: 194.4mg

Allergra: 180mg

Ativan: 2mg (This is the emergency medication for after a seizure)

9:54pm:

I text Sara to let her know that I had a seizure.

10:45pm:

Sara's home and I'm all ready for bed. Apnea machine filled with water, teeth brushed, the works. I remembered how to do everything... good. Sara and I talk for a while about the seizure, and she reminds me to describe it as best I can in my seizure diary. I'll remember more about the seizure tomorrow.

11:00pm:

I'm asleep. Tomorrow, repeat.

Front of the Line

Good news! I'm being weened off Sabril! If you don't remember, Sabril is the anti-seizure drug that can cause peripheral blindness, so I had to do an eye test every three months. It definitely wasn't working for me; against me, actually. I was having the same amount of seizures, about three a week, but they were far more intense than I normally experience. Plus, there's this new phenomenon called "Todd's paresis" that started happening. When I have an intense seizure, half of my face droops, and is paralyzed.

Usually, when I'm being weened of a medication, the side effects can still linger, plus there's a risk of more seizures for a period of time while my body acclimates to the new mix of chemicals.

My last major seizure came in the doctors office (of all places), not in front of the doctor, but it was a doozy. Sara basically talked for me the whole appointment, because I was still recovering once the doctor came in the room. It was a hell of a day.

***

I've been talking to Sara (more like complaining) about the mindset of people in the hospital. I've had to come to terms with this subject myself. It may be working for me in some regards, and against me in others. Basically, a lot of people believe that while they're walking around, going to appointments, visiting loved ones, etc. They believe that they're the only ones there, and the reason their in the hospital has to be the most important.

The reason I'm complaining is because I can see that kind of behavior actually works. The loud man in line seems to always get pushed to the front. It's a sad practice.

The day I had my seizure in the doctors office at NW, I fought the whole day for my story to get just ten minutes of attention. I was so stressed, but I tried to keep my cool; only Sara could tell that I really wanted to fucking scream. I was red, my blood pressure was reading so high that the nurse took it twice. I remember staring at the wall in the office while my eyes started going black, and the seizure began. I frustratingly called out to Sara, and I took out my VNS magnet.

At some point the doctor came in and started talking. Sara was my voice that day.

No Sleep

My rule is to never (or try not to) write late at night because it's kind of like waking up in the middle of the night, and writing down your dreams. They never make sense once you're finally awake.

That's why I plan on posting this when I have a chance to "approve" it tomorrow.

I'm writing this at 2:00 am. Sara's in St. Louis for a conference, and I'm at home. I cannot sleep. Usually, when we're apart for a night, she's at home, and I'm in a hospital room in the city.

Obviously, I'd rather not have to be in the hospital, but if I had to spend a night alone, I'd rather have it be that way. I can't really sleep in the hospital either. They check your vitals every four hours, even throughout the night, so I'm constantly being woken up. Usually, we're trying to record a seizure, so sleep deprivation is a good thing.

Last time I stayed over night at NW, it was for Meningitis last fall. My room was "quarantined," so I think they broke protocol and let me sleep all night. After all, I was in a room with video-monitoring, so they would know if something bad happened.

I remember that my room was so black and quiet. I was still in incredible pain, but drugged. One thing about these strong pain medications... they don't make the pain go away, they just make it so you don't care that you're in pain. So, while I was awake I just stared around the black room with a headache that radiated to my feet. It was so dark that I could close my eyes and open them to the same blackness.

I've never really been afraid in that hospital, but that night, in the dark, I was. I was praying for mercy; praying that I didn't have a seizure while my brain was on fire.

Creativity and Epilepsy

Epilepsy is a brain disorder, and the brain is very creative. A seizure can prove that point.

I'm a "creative" person, after all, I excelled in art and music in high school, and I ended up choosing an art school for my college studies; graphic design. People always describe themselves as being creative or non-creative. You'll hear it everyday, somewhere. The truth is, we're all very creative inside.

I say this over and over to my wife and doctors. An aura (seizure warning) is where the brain presents itself to the host.

I've had five seizures in five days. Last night, I was laying down in our room just before bed when I felt this warm feeling in the pit of my stomach. Soon I started to see the objects around me as if through a child's eyes; they were all foreign and confusing. As the warm feeling crept up my neck to my head, I felt like I had just finished crying... you know the feeling after a good cry.

Just then the world opened up to me and I saw every color and heard sounds and familiar voices from my past. I can never quite make out what they're saying, but it's so familiar and there is so much love in the air, it's all so beautiful.

Of course, my muscle memory grabs my hand to find my VNS magnet in my pocket and while I'm seeing all of these beautiful things, I swipe the magnet over the device to activate it.

The aura comes to an end and the seizure starts. I've explained this before; sinking into myself, sometimes waking up minutes later, confused, unable to speak.

But the aura is something that I wish all of you could experience. It's something that people would pay to feel, to see. It's what makes me believe that the brain is creative... every brain, everyone.

***

I have a Neuro appointment at NW next Monday, along with my eye test that goes along with the drug Sabril. We're going to talk a lot about Sabril's side effects, and whether or not the risks are worth the reward.

I'm going to talk to him about my weight gain. All of my meds note that this could be a side effect, but it seems like I'm a sucker when it comes to side effects. I was turned on to the idea of diet being able to help slow the frequency or severity of seizures as well as control my weight. That's going to be a strong bullet point on my list.

Living Body Without a Soul

This weekend, for some reason, I had the courage to watch something that overwhelms my life, but I've never seen: a seizure.

It was on youtube, of course. I know a little bit about the medical terms for different types of seizures; partial, generalized, etc., I've tried not to connect these words to my experience, because I can only talk about what's happening on my end; I can't see what everyone else sees.

I found a video of a man, apparently having a partial seizure. He started out by trying to explain what he was seeing during his aura. After that, he started licking his lips, it looked like he was chewing gum. His loved ones knew what was happening during the video, but I was confused. I had to watch the video over and over to get a grasp on what was actually happening.

The one thing I did notice was the man's eyes. They were black and lifeless. He was looking directly at the camera for a good part of the video, and all I could see was an emptiness in his eyes. It was like there was nothing there; a living body without a soul.

I know my doctors would all agree and tell me that, yes, your eyes dilate during a seizure, dot, dot, dot. But what I saw during the video was what my loved ones most likely see when I'm having a seizure, something I just can't wrap my head around: Jeremy's body moving and talking, but lifeless.

It was an eye opening experience; a very scary look into what's happening to an epilepsy patient on the outside, when I only know what's happening on the inside.

***

This weekend, Sara and I spend some time in Milwaukee to see a concert. It was a great time. Everyone was a lot younger than us, and annoying as hell, but I was able to see through that, which is very surprising for those who know me well.

The whole weekend was, and I knew this going into it, a perfect breeding ground for a seizure. Crowed, hot, long, little sleep, etc.

I can decipher, in my own language, what kind of seizure these experiences can create. On the way home, halfway from Milwaukee to Chicago, I cursed out loud knowing that I was having an aura in the car. I lifted my butt off the seat to grab my VNS magnet from out of my right pocket and started to swipe it over the device implanted in my left chest.

I started sinking slowly into myself, as the right side of my body went numb. I remember this because I was staring at my right hand, it was opening and closing at it's own discretion. By then I had already over the VNS magnet from my right hand to the left so I wouldn't drop it; muscle memory, I guess. This is probably the point in the seizure where my eyes go black; just an amazing thing to think about.

After I thought the seizure was over, I slunk down in my seat and groaned in disappointment. Yeah, the weekend was the perfect storm for a seizure, but I couldn't even make it home... almost though.

I was pretty alert, meaning, I knew that I just had a seizure, but I still had to ask Sara to be sure that what I saw actually happened. After the seizure I was a little depressed, and very tired.

The rest of the way home, and when I found my bed back in Illinois, I just slept. The best medicine for an Epilepsy patient recovering from a seizure.

Feeling the Time Between

For those suffering with Epilepsy, the time between seizures is called the Interictal state. So, basically, it goes, Aura, Seizure, Postictal state, then back to the Interictal state. The process repeats over and over.

Some of you out there may not have known that there's a term for this, but the odd change in behavior or mood in-between seizures can be diagnosed as Interictal Psychosis.

I'll tell you that I have no medical background, I am actually trained in the visual arts, so I can't preach any sort of statistics or studies on the subject of Interictal Psychosis. I'm an Epilepsy patient, and I only know what I've experienced. I believe that, with a clear mind, my peers and I are the only ones who can really provide a semi-clear definition of this aspect of the Interictal state.

I experience, on average, three seizures a week. Some more, some less. Most of the time I will have none for many days and then several... I mean several all in a row. This is the known to me and my wife as the bad time.

After each seizure, during my Interictal state, I'm never sure which Jeremy I am. Sometimes my heart is filled with hate and frustration, sometimes crying uncontrollably, and other times I can't keep my eyes open for hours on end. During the times when I am another Jeremy, I cry out for another seizure to come. This is the only time that I can describe Epilepsy as painful. It hurts from my physical body all the way to the deepest parts of my heart.

When I'm another Jeremy, I know deep down that I'm someone else, but all I can do in scream while waiting for the next merciful seizure to find me. Sometime it's hours... sometimes in can be days of this hell.

When I'm finally knocked back into myself, I can communicate. This is usually the time when I can write for you, and speak clearly to my wife and therapist. But, I will say that both Sara, and my doctors can tell if I haven't quite made it out the psychosis, and back to the real Jeremy.

When I have a strong opinion as the real Jeremy, I have to look Sara right in the eyes and tell her that she's talking to "Me," and not some sort of skewed version of myself.

***

What's crazy about life is that while writing this, I just had a seizure. I can feel myself teetering on the brink of crying. I know that it's not over, but I'm still typing. How is this possible?!

Smile for me, Jeremy

What people don't understand about people with Epilepsy is that having a seizure is the easy part. We lose that time, it doesn't unusually hurt, and it's really not our concern what happens while we're having a seizure. We leave all of that stress to those around us... loved ones, friends, even strangers in the worst cases.

A person with Epilepsy lives life between seizures. There's actually a term for the time between seizures if you can believe that. It's called Interictal. We live our lives in an interictal state; the time after, all the way to just before a seizure.

This is the time when our minds show us what is really going on inside, but it presents it in a way that we will never be able to describe it. That's why I see a therapist, and I write for you. I'm trying to be the first person with Epilepsy to truly describe what it's like for us to live.

When I come to the end of the interictal state, I start what's called an Aura, a seizure warning. An aura is exactly what it sounds like. I start to sink inside myself and it's like my mind stored every memory just for this moment. It's not like a dream, because every sense is activated. I'm seeing through my eyes from when I was young, sitting in front of my grandfather's television, I feel my face warm from the TV's glow. I'm playing in front of the TV, it must be with Playdoh because the smell is activating my sensory glands. I'm salivating, I can taste how the Playdoh smells.

Just then, I come to a fork in the road. My mind makes a quick decision as to which kind of seizure I'm going to have. Lately, it's been a type of seizure that tricks me into thinking that the aura was the actual seizure. I'm still stuck inside myself, like I was during the aura, but now I'm seeing through my eyes and not with them. I see myself saying words that I don't understand and I ride along and my body makes it's own decisions on where to go and what to do. My eyes look at Sara and I notice that she's moving her mouth as to talk but all I hear are echoes. My body must understand some of her commands because my body is moving, and mimicking her movements. "Smile, Jeremy. Smile for me. Smile big!" I can understand a little... the word "smile," I know that word. I can feel myself slowly gaining a little control of my body.

I'm numb, and I have already forgotten about the seizure. For me it was hours ago, hell, it could've been. Sara looks confused as I ask her what happened, because it looked, to her, that I knew what I was doing, that I was in control of my body and what I was saying.

As I start to accept the news that I just had a seizure, now comes the stage just after a seizure called the Postictal state, this stage can last for minutes to hours. My mood shifts to one extreme or another, and basically I'm anyone except myself. More often than not, I'm crying, and I just can't figure out why, and that is exactly why I'm crying... did you get that? I'm having a hard time understanding commands, and putting words together. So all I have to go on is the memory of this moment to try to explain it later.

Then, again, I'm back... Interictal. The time where I can live my life... except, wait, I don't feel right. I feel angry, I feel sad, I feel lonely, I feel excited, I feel, I feel, I feel, I feel...

This is a new topic: Interictal Psychosis. This is new to my doctors, too. Here's one definition: "The interictal "schizophrenia-like" psychoses of epilepsy conventionally are treated with antipsychotic medication with uncertain results." (http://www.ncbi.nlm.nih.gov/pubmed/10732658)

That's where we are now...

They're Getting Stronger

Let's get right to it.

I'm taking a medication called Sabril. It's billed, to us anyway, as a fairly dangerous medication as far as side effects go. I'm horrible at side effects, so Sara and I were very hesitant. The major possible side effect is peripheral blindness... permanently. So, I better be damn sure that this is going to go well, because last year didn't go so well with the Steroid and IVIG treatments.

No vision problems to report, but my seizures seem to be getting stronger. They happen just about as often... three a week on average, but it's not just the seizures I'm worried about, it's the postictal (seizure hangover), and interictal (period between seizures) states that I'm most worried about.

My last "bad" seizure was about two weeks ago, I've had seizures since, but not to this magnitude. 

It all started in the kitchen. I felt the aura take hold... I started seeing lost pictures, and hearing voices in my head from when I was younger. I could taste or smell (I can't quite figure out which one) play-dough in my mouth. I remember Sara telling me to sit down at the kitchen table (she had just came home early from work). 

The next couple of steps are mostly from Sara's account, because my version is a little hazy.

After I thought the seizure was over, I got up from the kitchen table. Sara was talking in the background, I would later find out that it was the hospital that she called. I thought that we were going to go out for the afternoon because she had the day off, so I went for my coat and hat.

After I got ready to leave for the afternoon, I sat down in the living room, waiting for Sara to finish her conversation. While on the phone, she came to me and kept asking me to smile. "Smile big!" she said. I could only smile with half of my face, the other half was temporarily paralyzed, something known as Todd's Paresis (this has never happen to me before).

A couple of minutes later, when Sara was just finishing her conversation with the hospital, I came to realize that I wasn't in the kitchen anymore, but somehow I was in the living room with my coat on. My body was still very weak, but the one thing that I immediately remember is becoming very emotional. 

Note: this is VERY hard for me to talk about, let alone write for everyone to read.

After "awaking" in the living room, I was very confused and started crying. I apologized to Sara profusely for having epilepsy, and kept telling her that I thought people would call me names if they ever saw me in this state. Every minute that went by, I started becoming more aware of what was going on around me, but I couldn't stop crying. I just couldn't. Even now, I'm very nervous as to how you will all view me after telling this story... maybe it goes deeper that just the postictal state.

After awhile, Sara brought me some Ativan, a rescue medication to stop me from having anymore seizures. It basically knocks me out for hours. It did just that. I would wake up hours later with a big headache and many, many questions as to what happened. I could barely speak and form sentences, but I knew what I wanted to say... I just couldn't get it out.

Days after this seizure, I still had trouble putting together words and thinking quickly. My speech was very bad, but by now Sara had learned how to speak "Jeremy" after I have a seizure.

My seizures since have been "smaller," as to say shorter with less recovery time. I'm still getting very emotional after each seizure. Very humiliating.

I hope just reading this is the closest you all will ever come to experiencing this type of horror.

Ok, I'm Back

Ok, I'm back from the rant I had yesterday. I guess I could blame it on pre and post-seizure emotions.

I went on a bike ride today. Probably not as physical exercise, but rather a break from the four walls of our apartment. It was nice, a little muddy, but it helped clear my mind for a couple hours.

Some new developments. I'm now working solely with NW when it comes to my health. This is kind of nice because all of the doctors can talk to each other and use the same computer system, so when there's a diagnosis at this end, the doctors can see it on the other end.

As far as Epilepsy, I was put on a new-ish medication called Sabril. It was on the market for a while, then abruptly taken off because doctors saw that that it could potentially cause peripheral blindness. After a couple years, it's back on the market with a HUGE warning label, and system in place to be sure to catch any blindness that the medication may be occuring. I'm going to NW every three months for an extensive eye exam. To be honest, I could write a hole post on how nervous this medication makes me.

On the good news side of things, I started seeing a new psychiatrist. He's at NW, (my old one was closer to home). He's young, energetic, and full of ideas on how to help. I'm intrigued, but still guarded because, after all, it's still psychiatry... the place I go to dispel my darkest feelings.

On the day I met with the new psychiatrist, Sara was unable to drive me down in the morning, but she was going to be there to join me for the actual appointment. This meant that I was going to have a little adventure for the day!

I put on my best shoes, wore my best coat for the trip and carried all of the necessary documents I would need in my favorite bag, (yes, a man purse). I walked to the train, bought my ticket and waited. Once the train arrived, I enjoyed looking out the window at a vantage point similar to an average, everyday commuter. It was both comfortable and enlightening.

Once I arrived at the station, I hopped in a cab and said, "Northwestern hospital please!" in the most dominate voice I could muster. The cab weaved its way through traffic and dropped me off exactly where I needed to be. I texted Sara, "Here."

I made my way up to the cafeteria... everyone should know that I love their cafeteria. Just awesome. Once, I got my food, I ate and waited for Sara to drive in and meet me where I was sitting. It was then that I thought to myself what a great day I was having. I didn't know how the appointment was going to go, but right in that moment, I felt like I would on my way to work everyday, or driving to my parents house in Wisconsin. I felt free, independent, and strong.

Don't take even the littlest things in your life for granted. The things you loath the most in your life right now could be taken away, and you'll spend the rest of your life hoping for the opportunity to loath them once more.

It's Been Awhile

I'm back, sitting at my desk, literally wiping dust off the keyboard. I haven't written since January; right before I took my trip back to Mayo Clinic to see if they could provide us with any answers, advice, or pat on the back. Short answer: No.

I've written post after post about my experience with Mayo, but I'm choosing to skip over our last trip. Not because something happened that I'm withholding, but rather, the opposite. They offered us a path, and we took it. I knew that there was going to be some work to be done on my part. 

In the fall of 2012, I was put into another EEG. The doctors boldly took me off of all of my medications, so they could get a good look at what my seizures looked like. I was admitted a week from Thanksgiving of that year, thinking that I would definitely be out by the time the holiday rolled around. I was wrong, and I spent the holiday in the the hospital having seizures. I remember the first one only because I looked up from the bed to see my Dad, with his coffee cup shaking in his hand. (I was told that there were nurses crying in the hallway after one seizure in particular. That will always stick with me). 

I had seizure after seizure until my tongue was so bit up, bloodied, and swollen that it was hard to talk. Even weeks later, I was rubbing the same solution that you would drop on a toothache on my tongue because it hurt so bad to eat, drink, and talk... even sleep.

***Just had a seizure, taking a break***

Once given a proper diagnosis from Mayo, I was put on a steroid treatment in spring of 2013. A nurse would come to my house once a week and administer an IV steroid treatment. What I experienced was what I HAD to expect. The nurses, while nice, all took several sticks (2 to 5) to find a proper vein, and when they did, I bled all over my kitchen floor until they inserted the IV. So much blood everywhere, I remember.

The steroid treatment didn't work when it came to reducing the number and severity of my seizures, so the doctors decided that the next step would be IVIG. I can't quite explain what this is, but I would go to NW once a week and it worked similar to the steroid treatment. This started in the fall of 2013. 

The nurses were better, in the they found veins more efficiently. I was told at Mayo in a very casual manner that there was a potential risk of me developing Meningitis as a side effect of the treatment. Guess what happened? I woke up one night after an IVIG treatment with a headache so severe that I thought there was no way that I could make it to NW. Sara did her best and got me down the ER at NW.

There I received a spinal tap (now my forth in five years) and not nearly enough drugs to ease the headache. The spinal fluid was tested and I was deemed a threat to the other patients and doctors, so I was put in isolation. I sat there until a proper isolated room was available upstairs in the Neurology department. 

I was moved after hours waiting with Sara and my two sisters. They all really went to bat for me that day. I was put on antiviral, antibacterial, and some other "anti" medications for a couple days while in isolation before I was deemed non-infectious. Although the headache was still there, I was allowed to go home. The next week, I started back up with the IVIG treatments, with full knowledge of what they can do.

After still having seizures, nothing seemed to be helping and so the treatments were stopped early; just before Christmas. Then after the holidays we ventured back up the Mayo for more tests only to be told that they tried what they could, and it might be best to work with my doctors at home, especially with my therapist and psychiatrist, (I let them in on some of the darker side effects these medications seem to have.)

This is a lot to take in, and I know it's sounds a bit like self-lothing, but this is what I go through when I have my therapy sessions. I discuss all the gory details out-loud with the hope that I can make some semblance of what this all means. All of it. 

What does it all mean? 

Why is this happening? 

What can I do to better my life and those lives around me? 

What kind of quality of life is this?

All Press is Good Press

I'm trying very hard to connect with old friends. I've spent my whole night Facebook friending old acquaintances from high school fifteen years ago, college friends from ten years ago, or new friends that have developed the last couple of years. What I'm trying to do is paint with a broader brush when it comes to my writing, when it comes to my Epilepsy and awareness.

I'm trying to share my story with as many people as possible. I'm sure that most of you are trying to do the same. A persons story is very, well, personal, but what I'd like to do is bring my illness to the forefront.

I want this blog to be a soapbox on which to stand and shout the thoughts running through my brain. It's easy to communicate these emotions to a loved one (slightly), but it's completely different to expel these feelings to the sudo-public.

I want this blog to be known, I want it to be shared, talked about, discussed, and gossiped about. All my press is good press.

Monday Morning Status

Last night while watching television with Sara, I walked into the kitchen and felt as though I was in a dream. Of course, I knew what was happening, and to be honest, I knew it was coming all day. I felt the little "ticks" where I lose the split second of time that I always talk about.

Once I reached the kitchen table, I sat down and waited for the seizure to wash over me. I felt my eyes getting dim, as Sara grabbed the VNS magnet from my right hand that was becoming numb. She swiped it over my chest several time to activate the device.

That's all I remember, and in fact, when I woke up this morning I thought it had been all a dream. I called Sara on her lunch break to ask her what happened... "Did I have a seizure last night?" She said that I head tilted to the right, my right arm started to stiffen, and I was babbling incoherent words.

Now I can expect as least two more seizures within the next couple of days; that's how my seizures work, they come in three's. The first one rocks my world and the next couple usually knock me out of the bad mood that usually comes with the first seizure.

That's the thing though... I feel great. I did start the new antidepressant, Geodon a couple weeks ago. Maybe it's doing it's job better than Abilify.

All I can say today is that I'm happy I thought it was all a dream when I woke up because the knowledge that I had a bad seizure does depress me. I just think to myself that I was doing so good, and just maybe this is the start of a long streak of being seizure-free. Not today, I feel strong, even with the knowledge that I'll probably have a bad week. What I'm going to do is be conscious of my health, drink some tea, and watch a movie that makes my laugh out loud.

The Circle of Struggle

I'd like to write a post that leans toward the positive aspects of my life. I've been thinking a lot about writing, and reading the posts I've been working on. It's come to light that my depression, and anxiety make their way through my hands, and I seem to type words that aren't necessarily inspirational.

I've been thinking a lot about me as an adult living with a disability. What can I do inspire people instead of reflect the horrors of someone who has to live everyday with the fear of having a seizure?

I probably will never be any kind of motivational speaker, but what I can do is write a post that helps my readers better understand what it's like to smile even on days where there should be no reason to smile.

I love to laugh; I live to laugh. Even watching movies that are considered dramas tend to negate my attention. Anyone who knows me will tell you that rarely do I show signs of the struggle that's going on inside. Maybe that's why it's very important for me to write about these struggles.

Everyone has some kind of struggle going on inside them. Whether it be money, relationships, work, etc., people need to be able to properly expel these emotions in a proper way. It took me a long time after contracting Epilepsy to start this blog, and start seeing a therapist. The blog was my idea, but I started therapy with the help of my wife and family.

I'm not saying that everyone needs a therapist, but everyone needs some sort of outlet that is unrelated to those who are sharing your struggle, like a spouse for instance. It's hard for me to talk to Sara or my family about my emotional problems because I know that they feel similar feelings, and are writing the same exact story.

My Mom, my Dad, my wife, my extended family, and my friends have all seen what it's like for me to sit in the hospital. They've seen my seizures, they've seen me cut myself, they've seen me descend from a man, to a patient. I've scared the shit out of them; they know the layout of every single hospital, and have sat in hospital rooms just as long as me. They have fought for me, argued with doctors, nurses and even the police for my well-being. They need an outlet for their frustration just as much as me.

All I can say now is that if a person finds themselves fighting for their life, there are dozens, hell, maybe even hundreds of people that share their struggle.

***

A lot of my posts are geared toward communication to my friends and family. It's hard for me to communicate verbally how I feel, and so I write in order to let them know what's going on in my head.

The number one rule for this blog is I'm allowed to have complete creative control with no restrictions. I can write about anything I want without judgement; this has helped me greatly. I always write when I'm alone, either Sara is sleeping, off to work, or otherwise out. I find that this gives me the opportunity to really think about my posts; this is also true for the other creative aspects of my life. I've found it easier, and I'm more creatively productive when I don't have anyone "watching over my shoulder."

There have been a couple of design jobs that I've had, where I didn't have my own office or other isolated workspace. I felt like I couldn't stretch out and really be myself, I would long for the days where I was able to work late and have the office to myself, or be surrounded with people that had the same creative habits. By that, I mean they couldn't properly make good work with a crowded workspace.

Even as a photojournalist, being surrounded by hundreds of people at events and such, I was able to weave in and out of people somewhat anonmously. I worked in a way where I knew no one was watching me; that's also the way I knew I would get the best shots.

Having time alone is essential. Being able to but a period at the end of a sentence that is completely my own is the only way to truly thrive as an artist.

Finally Digital

For years now, I've been shooting digital photographs professionally, but for my personal work I've always leaned toward 35mm film. I just love the way a film camera feels in my hand and how the grain of the film looks either printed or viewed on-screen. Although I've been shooting film, I always use a film scanner so I could share them digitally or print them for framing purposes.

While working as a designer, I was also the in-house studio photographer for product and application shots. I absolutely loved the days where I knew I was walking into work for a day of photography over design. Don't get me wrong, I love design, but photography flows through my blood more than any other vocation.

I soon became a photojournalist with the help of a friend to get me into the freelance photography business. I would design and shoot digital studio photography on weekdays and shoot for the Sun Times News Group in Chicago on nights and weekends with the inclination that my career would allow me to shoot for the paper full-time.

After contracting Epilepsy, I continued my design and digital studio photography career, but personal photos became non-existant. I just couldn't get my mind to be creative in photography anymore. I'm not sure if it was not being able to drive or the cost of film products, I just couldn't bare to load the camera with film and get out to shoot.

Recently, I received a new digital camera as a gift. It's very nice, and rivals the photo quality that I would get out of a scanned 35mm photograph. It's a rangefinder-style camera (the lens and viewfinder are separated), and when I look through the lens, I feel the same feeling as I did when I looked through a film camera. I look at my new camera I think about all of the memories I'm going to capture, and all of the art I'm going to make.

Bailey

Earlier today, my sister called me with news that the family dog, Bailey, may have had a stroke. She's apparently not seeing very well, her head is cocked to one side and she's not responding when my parents try to call her.

My sister was a wreck on the phone; she recently moved to Chcicago from Beloit, WI, and she felt very helpless. I can't blame her, having a sick animal that we all considered close family is tough for anyone.

Sara and I recently had to put down our first cat named Fiona. I wrote a post about this time. She had a brain disorder, so, in the end, she was a shell of herself. I wrote about how we had this in common. Basically, if I were the family pet, having uncontrollable seizures, I'd be put down, too. This sounds kind of dramatic, but this was a very tough time for me emotionally, being on a bad mix of medications, so seeing her this way just brought all of these thoughts to life.

Bailey is a good dog; my parents have had for over a decade, a long time in dog years. When I think about her life, I think about how she has been around for every event in my adult life; college, meeting Sara, being diagnosed with Epilepsy. I can remember her being there for me when I was visiting my parents, and her just knowing when I was "down," and offering her love to me by crawling into my bed and laying next to me. She just knew I was hurting somehow, and she wasn't happy when I wasn't healthy.

My Mom didn't want to tell me that she was sick tonight, but my sister called me with the news anyway. My Mom was trying to protect me so I wouldn't fall into a depression over her. I held it together pretty well, as I knew this day would come very soon given her age. Sara called both my Dad and my sister Jenni to talk to them and offer an ear. I think that helped. She's always good like that; I appreciate her love for my family, and how much they mean to me.

I can feel pain, but because I'm currently on two antidepressants, the news of Bailey being sick didn't cause me to cry. I will though. When it come to the point when Dad has to put her down, I will think about the good times and the bad times I had with her, and lose control of my emotions in a healthy way.

***

I'm up late again. I'm actually enjoying the time I have alone in our dark apartment. I'm enjoying it because I know Sara is safe at home, and I've been seizure-free all day, with no indications that an episode could be coming.

I met a new friend on Twitter a few days ago; she's also living in Chicago, which is nice because a lot of my followers are a distance away. She can relate to the city, and we can talk about the hospitals, although different hospitals, where we are receiving treatment for Epilepsy. She has posted similar photos as me when I was admitted (several times) for an EEG and other various reasons. That was helpful somehow.

She works at a news organization based here, so now when I'm writing, I pay special attention to my grammar which, I will admit, I'm pretty self-conscious about! Not that I'm crazy about my skills as a writer, but because I'm not a trained writer, and I write as if I'm having a verbal conversation. I wish I could have a better understanding of the written word.

She wrote about "coming out" as a person with Epilepsy to her co-workers in one of her pieces, which takes a lot of strength in my mind. I've had negative reactions when telling people I once worked with about having Epilepsy. No one quite understands what exactly comes with the territory. People hear the word Epilepsy, and the think of weakness as an employee, or being fragile in some way. This can be true, I admit, but we are still human beings.

The firm I worked for when I had my first seizure couldn't have been more tolerant of my disability. My boss, at the time, was instrumental in me receiving treatment. He knew what to do when I had a seizure at work, knew who to call in case of an emergency, and knew that I bad days, I couldn't be myself as an employee. I long for those times.

***

I'm a bit worried about the next couple of days because the weather here has been so cold. I usually have problems in extreme, and changing weather patterns. All I can do is think good thoughts, believe that those around me love me, and will do anything to see me be the man that I am, instead of a man trapped in a world of Epileptic uncertainty.

Geodon

Sara and I went to see my psychiatrist this week, and I'm now weening myself off of Abilify. The doctor prescribed Geodon, which is supposed to have less "weight" issues, and since Thursday, I've noticed that a lot of my psychological side effects of my seizure medication has subsided. Thankfully.

I had four seizures this week, the most recent being on Saturday afternoon. Sara was in Milwaukee visiting a friend, and when I called her, the first sentence out of her mouth was, "Are you the good Jeremy, still?"

Since last Sunday's very strong seizure, I was waiting for the other seizures to come so they would knock me back into my "good" state. They came... three times! I've never been so excited to have a seizure since I knew I'd have less of the anger and anxiety issues that I was having while in the interictal state.

After some research, I've found that Geodon causes severe sleepiness, or somnolence, as they call it. I've been taking it in the mornings and have noticed that I start to feel light and a bit euphoric, then I want to sleep. And when this sleep comes, it comes with a vengeance! I slept nearly all day on Saturday, and now I'm writing this in the wee hours of Sunday morning.

I'm going to slowly switch the intake time to the late evenings, so I just took the Geodon and half of Abilify. Right now, I can feel my hands getting light and it's getting easier for me to type, as I have less and less "noise" running around in my head.

Right now everything is clear, and I feel a sort of stoned clarity.

Me, Not Him

This afternoon, Sara and I are going to see my psychiatrist, (not to be confused with my therapist.) We're going to talk a little about my mix of seizure medication with the Abilify that he prescribed me.

I mentioned in my last post that I can feel the negative psychological side effects of my seizure medication starting to make their way back into my life, and I don't think that the Abilify (or even a stronger dose) is helping very much.

At the beginning of February, my Mom, Sara and I are making our way back to Mayo Clinic to talk about our options, which most likely will be a new medication mix. It may be putting the cart before the horse to talk to the psychiatrist first, but this is an issue that just can't wait. Plus, I know that at Mayo, they can look at ALL of my medications and make a proper judgement.

I had a seizure on Sunday afternoon, and I had another one last night. The Sunday seizure was very strong, while the one last night was a bit milder. The funny thing about last night's seizure is that I was praying for it since Sunday.

The time in between seizures is called the "interictal" period. During this time, I will notice a sharp difference in my normal personality, like increased depression, anxiety, etc. Basically, I can tell that I'm a different person. On Monday through yesterday night, I kept telling Sara that I wished the next seizure would come to knock me out of my funk. I was feeling very angry and irritable for no reason.

I can still tell that another seizure is coming, because my mood is a little "off." Writing is tough because I keep typing sentences that I then delete because I know that they're being written by another set of hands. This could be the medication problem that I mentioned above or (most likely) the interictal state.

***

In 2014, I don't really have any resolutions, just fears that I hope don't come into fruition. 2013 was a transition year, a year where we tried two different and extreme treatments that both failed. I learned that I have Diabetes, beyond the high blood sugar that the Steroid treatments cause. This was something I wasn't expecting, and a huge blow to my hopes of becoming healthier, even if the steroid or IVIG treatments worked in helping my seizures.

The fears that I have for this year are my body's ability to adjust to the new mix of medications that Mayo is most likely to prescribe. At first, we'll notice either an extreme drop in symptoms, or devastating rise. I'll see all the side effects of these new medications, because that has been my luck as of late, and I just pray that I can adjust swiftly.

I've been using Twitter to talk to other Epilepsy patients, and that has helped quite a bit. We talk about medications, and what kinds of seizures we all have. A lot of them are perscribed medications that I have already tried and have had problems with; most of them are on Keppra. Keppra is the medication where I basically lost my ability to think clearly; I was having severe psychological problems.

All I can do for 2014 is hope and pray that this year will be different than years past. That it is a year that I'll remember as a year of extreme change for the better. Whether that is finally seeing a dim light at the end of the tunnel, or being able to be the man that I truly am, instead of the strange person that makes his way to the surface and controls my personality in a negative way.