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.