Friday, June 25, 2010

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.

Thursday, June 24, 2010

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!

Monday, June 21, 2010


From Thursday to Friday I experienced eight seizures. These were new seizures. I would go unconscious... to you I'd look like I was awake... first having the seizure then getting up and doing weird things like taking off my shoes. If you started to talk to me I would give you a blank stare because it would be as though you were speaking a different language. To me I was completely out. I remembered the seizure crawling up my arm to my head and the next thing I know I'm across the room with one shoe off and drool all over myself.

Usually I'm asleep or a small seizure happens while I'm awake and conscious. After six seizures we decided to go to the emergency room. On the way there I had one in the car. We finally got to the hospital and Sara reminded me that I wouldn't get any food so I better eat something before I'm admitted. I asked for the greatest hospital cheeseburger and found a place in the cafeteria to eat. About three bites into my food I felt my hand and leg go numb, my eyes got dark and sounds went quiet. All I heard was Sara tell me to spit out my food. I got one swallow in and the next thing I remember is being in a wheelchair down in the emergency room.

Sara says nurses eating in the cafeteria rushed to help and soon emergency room nurses came to get me. I was awake to them, they thought they could talk to me but I was out. Walking dead you could say. I wasn't saying anything, Sara says I just looked confused wondering why I couldn't finish my food.

When I woke up in the emergency room I already had an IV in and they had pumped me full of Ativan (a strong emergency seizure medication) and the seizures stopped and I fell asleep. We waited in the emergency room for a bed in the neurology department. When we finally got one I was hauled up there and could barely stay awake. Sara stayed for a little while but left after 11pm.

Hospital nights are rough. There's always someone waking you up to take blood or the check your vital signs. Usually these things happen from 3am-6am. You NEED drugs to get any rest.

Sara got there on Saturday and stayed until I was able to leave. The doctors mixed my meds again and attributed the relapse to an antibiotic I was taking for a skin rash. They asked if I wanted to stay another night or leave Saturday night and I chose to get the hell out of there!

Now I have to be watched again. No locked doors, being by myself for long periods is not good. It's quite a kick in the teeth. It's cliche but I've taken one step forward and two back. Of course I stopped taking the bad medication so that will help but the fact that something so small can make me feel like that is scary. Yeah, I'm a little depressed. Being babysat takes a toll on your ego...