VNS

At my appointment yesterday afternoon we received final conformation that we've really exhausted the chemistry experiment in my body with all the different drug combinations I've been on the last couple years. Dr. Macken's push now is the Vagus Nerve Stimulator. In the picture you can basically see what it looks like in my body.

The VNS is a pacemaker-like device that's implanted in the left part of my chest, under the skin. A wire will run up and wrap around the Vagus Nerve in my neck. A small amount of electricity will pulse from the device, through the wire and straight to my Vagus Nerve that, in turn, runs to my brain and effectively lowers or prevents my seizures.

I've read some about the device and there's really nothing but praise about what it can do. It's an out-patient procedure which it good or bad depending on the pain and recovery.

At this point, I'd do anything to lower the amount of entries in this blog.

Short Wait

I'm sitting in the waiting room at Northwestern for my appointment with Dr Macken. I'm going to have a lot of questions about my medication for sure.

Something I told Sara before but when I'm at Northwestern I feel very comforted, like I'm safe. Almost like being admitted here for seizures was a good experience. It's like when I'm here I'm home.

What I Have

Last Friday, Saturday and Sunday I experienced six of the smaller "awake" seizures (the kind where I get really dizzy and start a dreaming feeling in the back of my brain). It's been very frustrating seeing as though I was put on this "miracle" drug called Vimpat that was supposed to level me out.

After calling the nurse they thought it was a good idea to put me on another drug called "Mephobarbital" (I think that's the spelling, I don't have it in front of me). Now I'm on five medications and I take them at four different periods of the day. My god.

I have a doctor appointment next Monday and I'm going to have questions about the amount, for sure, but also the reactions to all of these medications together. We all know that the medications I've been on in the past have swung me into deep depressions and violent outbursts. I'm not really willing to revisit these dark times.

The good thing is I'm feeling better emotionally. Even though I had the seizures last week, I also had a job interview which, even if I don't get the job, makes me feel proud of my work and gives me hope that people are noticing my talent. I know it's pretty lame to add quotes but I heard one lately that kind of got me thinking about my place and how I should live. "A man can not be made comfortable without his own approval" (Mark Twain). I think I need more self confidence. Whether it be about my body, where I live, my financial problems or what cards I've been dealt in life. I have to start thinking about what I have and not always focus on what I'm missing.

Well Beyond Beaten Down

I just keep falling. Sara is all I really have. Don't get me wrong, I'm the most grateful fiancé there could be, it's just very turn in life has been painful. This week I had eight seizures, spent time in the hospital, I've been having horrible nightmares to the point where I wake Sara up so she can confirm that I'm awake. Most recently my job is falling apart. I'm hourly now which most likely means less money, I even had a verbal scuffle about the situation with my boss. I don't know how things are going to work. I just can't seem to find a place to climb.

Life Lesson

"You learn to fly while you're falling."

But, it just feels like every thing's falling apart right now.

Western Sunrise

After the string of seizures last week a funny thing happened in the days following. I'm unfamiliar with my home, work, neighborhood... I know where everything is but it's like I moved to a new city. The sun seems like it's in the wrong place or something. It's really hard to explain.

The last time this happened was when I had my seizures for the first time. I didn't even recognize what a computer screen looked like... I had to "relearn" all of my computer programs. I walked around my office, knowing I worked there, knowing where the break area was but when I found it, it looked as though someone remodeled it. I knew where my office was but it looked like someone had moved the furniture around.

This is kind of how this week has been. The sun has been coming in windows in a way that I'm unfamiliar with what time of day it is. Waking up feeling like it was 4pm. The sunset feels more like what I think the sunrise should look like.

I've read a little about how a seizure can play with your mind like this, and because I experienced eight in a short amount of time, it's possible that I'm thrown off. I just wish I could better describe how this feels. I wish I was a born writer and could relax at a computer and put into words a better picture for you how it feels to wake up in a "new" room and be able to study the faces of friends and family in a way a stranger might. To basically have the sun rise from the west.

Business of Epilepsy

I received an automated call from the business office at Northwestern Memorial this morning. It was to remind me of my balance and asked me if I want to talk to a representative about setting up a payment plan by pressing "0". I pressed it and applied for assistance.

Given the amount of money Sara and I make combined we should be able to take some money off the $500 bill. Hell, even if it's fifty bucks I'd be a smiley gentleman.

(FYI, I'm typing this with double vision from my medication so if there are misspelled words, I apologize)

Money has a lot to do with any disease or disorder. I've found that it helps to save up for future visits like most people would save for a car or pretty dress or vacation. In the last 2 years since I've had Epilepsy the only time off from work has been from doctor visits and hospital stays. Last week I stayed overnight at NW I really liked the idea of someone bringing me my food and changing my bed sheets plus I get to wear he gown and little footies... they're comfortable. When I was there they walked around and asked me if I wanted coffee about an hour before my meal... a little cup of coffee brought to me. If that's not vacation I don't know what is. I got to know that lady, she'd come in my room smiling... "food and nutrition" she'd say. I'd say "hey, thank you!" she'd open my table, move it over my and sit my bed up. Talk about service. Hmm, it might be worth the money just for that!