Stupid Hurts

I had a neurology appointment today. After the usual poking and prodding (I have lost ten pounds because of the drugs) I got to talk to my doctor and hear a phrase you never want to hear in medicine, ” uh-oh.” We were talking about the fact I am having seizures daily still after trying 4 medicines. Several of these medicines have been at the safest highest dose. And I am showing no real improvement at all, and in some areas I am actually getting worse.

He noted, that having tried this many drugs for little over a year now with basically no results, that it’s more likely than not I will continue to have seizures unless there is brain surgery. Truthfully there are two problems with that. The first is the fact no one actually knows whats wrongs with me, so I would rather them not melon balling my brain. It is the only one I have, plus I have put a lot of time into it. The second problem is the fact I don’t have insurance. Doctors don’t work for free typically, so even if they knew where to dig, I couldn’t pay them. So for now, they are trying a left field drug and anti-depressant.

After leaving the clinic I was heading to the coffee shop because I needed to see my friends. I kinda needed some reassurance at that point. Being alone probably wasn’t a good idea. Taking my usual route I woke up in the ditch with people standing over me which meant I’d had another seizure on my bike. One of these days I am going to break my laptop when I do that.

I have always had [tag]insomnia[/tag]. You can work it to your advantage and I have learned to work with it over the years. When you learn to sleep only when your body allows you, and fight through that plastic wrapped feeling you develop after being awake for a few days. You can get a lot more done. Now I was reading the side effects of the medicine I started taking last week [tag]Zonegran[/tag]. It causes insomnia and drowsiness in most people, what a combination.

Sunday when I woke up midday and stretched I decided to lie there for a bit. I felt good, that usually doesn’t happen when I first wake up. So I thought about my situation for a little as I relaxed. Then something struck me as odd. I realized I wasn’t at home, I was lying on the side of the road in heap with my [tag]bicycle[/tag]. Unfortunately I didn’t know how long I had been there. That meant I had another seizure, I had crashed, and my memory was screwed up again, but I did get a good nap, there is always a bright side.

Early Thursday someone asked me, “are you going to Elizabeth’s party Friday?”
“Who?”
“Elizabeth?”
“Who?”
“Besti….The mad Russian!”

Turns out I was, so were half of the other bicyclist I know and people who do volunteer work in east Atlanta went as well. One of the more interesting things of the night was the fact they had liberated a huge billboard from somewhere and turned it into a massive slip and slide using water and baby oil.
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I played it fairly calmly since I was still recovering from several seizures earlier in the the night, but still managed to have an all around good time. I also had to barter for a ride home in very broken German.

I think it officially became a party when I heard Jeremy utter the phrase, “Where are my pants?”
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The next day while doing volunteer work at Sopo, I had just taken a moment to eat lunch when a guy ran his motorcycle into the side of the building while attempting to exit the parking lot. I ran over to make sure he is ok, then checked to make sure he didn’t have a concussion, and what happened? I had a seizure. Pretty much like clock work. I checked the guy out before walking to the bathroom room and passing out. 6 seizures in 3 days while on my medicine, a new personal record, but it has left me a bit tired and in pain. But on a side note, I am getting a new Medic-Alert bracelet for my birthday

So since I have gotten here to Atlanta my seizures have gotten a lot worse. In both severity and frequency. Mostly is has to do with the amount of stress I have put myself under without appropriate amounts of release. Basically I have run non-stop since I have gotten here. Constant projects and commitments and what not. For someone who isn’t getting paid to do anything, I was sweating a lot of deadlines last weekend. I have just as many this week, but I have made it a point to accept a few less projects.

I still intend to attend Food not Bombs next week, The Public art bike tour on the 6th , and allegedly there is a bike race on the 12th at octane that no one seems to know about. I had to drop the hand made vendor fair and a few other things on my plate unfortunately.

So I just scheduled to return home to Birmingham to spend 2-5 days in the hospital being monitored and hooked up to machines on the 22nd. They are making me find people to stay with me the entire time I am there to push a button in case I pass out since they are taking me off my medicine, and that almost guarantees withdrawal seizures.

This started off like most other nights, I was [tag]cycling[/tag] across town to run an errand, and then I woke up in an ambulance…..again.

Now here is where the details start to get a little fuzzy. Apparently while pedaling I had a [tag]seizure[/tag] and plowed into a [tag]police[/tag] car right in front of the hospital. I am not sure, because when I regained consciousness I was already strapped to a stretcher, and The first question out of my mouth was “where is my bicycle” .

After being rushed to the hospital in an ambulance, I got to hurry up and wait in triage for several hours while the [tag]hospital[/tag] staff found a place for me to be seen by a doctor. Only to get the usual diagnosis, “looks like you had a seizure.” “But you didn’t die”

So I got dressed, and here is where we get usual epic Stupid Hurts twist. After the nurse brings me my discharge papers 3 police officers step into the room to tell me that they have to serve an arrest warrant in a different county and I need to come with them now. I really didn’t have anywhere to be, and if it meant someone else would be paying for my medicine, there really wasn’t a loss here. But I read the policeman’s note pad, and it had the wrong name on it. I gave him my I.D. card.

Needless to say here I am updating my site from home.

Both of my bikes need repairs now, but hopefully I will still be able to race in a week and a half

After finding out I had been scheduled to see a gynecologist I already knew where my day was headed. Luckily we got that sorted out fairly quickly and the nurses got me to a much needed neurology specialist.
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To make a long and convoluted story short. Several hours of questions, poking, and prodding they realized odds are it is the medicine I am on thats actually been causing the moods swings, the confusion, and the depression. Most importantly the drugs may be responsible for the hallucinations, lets not forget those. I am sure the nurse I tackled hasn’t forgotten about it yet.

Anyway they decided to lower my dosage by about a quarter so hopefully we will no longer be paying 200 some odd dollars a week for meds any more since my doc cut the dosage by a quarter.
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And there is now actually a piece of paper signed by a doctor saying dont drive or work for nine more months instead of just six.

My Grandmother is still in denial about my partial amnesia, and I am being stressed out from all sides. This is starting to get a little ridiculous in all honesty. Instead of getting the time I need to deal with my own issues and feelings. I have to bench them and try to be there for everyone else to help them with their issues instead. One of the big ones is the fact my Mom is having to deal with the fact she can’t afford to eat and buy my medicine at the same time. My medicine runs in excess of 200 dollars a WEEK! So we have the option of me risking another seizure and eating. Or me staying not killing over, and going hungry. So soon I need to figure out how to get a job without them find out I am insane, or I need to find a semi-legal way to get funding. Mom has expressed the fact she would rather me not work 1) because she wants me to take time to heal and 2) because of the whole Dr’s orders thing.
But we all know I have never been one to take things lying down very well.

And then there is my Grandmother, her way of dealing with stress is being critical about every small thing. I have been lectured for the way I tie my shoes. She has called from the other side of the house to lecture for leaving a light on. I get lectured on everything everyday. Plus she doesn’t like people to visit her house which means I don’t get to see my friends. That will change once I move out I hope.

Part of my Strength came from the fact I was emotionally unavailable, cold, and distant. I feel like it was a coping reaction. At the end of last year I had lost contact with my family and was basically alone in the world. And at that point I essentially unstoppable ready to tackle anything that anyone could throw at me. I think it was said perfectly in the movie Fight Club. “Once you lose everything, you are free to do anything.” The stress from the past few days had started to drive me back into that shell and a few people have noticed it. I am trying my best to not get cold and unavailable again, but it is impossible to deal with your issues when you have no choice but to help the important people in your life with theirs. They may say they don’t want your help, but as long as they have a problem, I can’t help but to try my best to help. It’s just one of my quirks.

I think I am done ranting for now.