In case I forget.

Starting to think about getting worried.
July 22, 2006, 5:32 pm
Filed under: Brain Bits, Faces, Fear, Husband, Memory, RX, Seizure, Words

I’m on day nine for Trileptal and the burping is ramping up. Today it started the minute I woke up and there have been a few episode where it got really heavy. It’s not even six yet.

Talked with my husband briefly about it yesterday. He has noticed it, also. I am almost frozen at the thought of repeating the experience I had with Keppra. It made me incapable.

That’s the best word for it. I don’t remember what the dosage was or how long I was on it by the time I disassembled, I’ll have to look it up. It wasn’t a lot or very long. It was like acid for a head injury. All the problems: the words, the memory, the comprehension, the faces, got dramatically worse. And the burping itself – that was when I was certain I would just one day not be able to get any air, and die. I know it sounds terribly dramatic HA! The girl thinks a burp will kill her! HA! HAHA!

Imagine being alone at home. You’re burping. To hell with that you can’t imagine. Suffice to say that yes, I do believe still now that if the episodes continue to get worse as they have over the last four – five days that it could happen, that I could just not be able to get air.

Once, it was so bad I used a wall. I stood with my back to it, about a foot away and just fell backwards – slammed my back into the wall in an attempt to break the upwards pressure so I could gasp in a little air. It’s some scary stuff, I’m not afraid to tell you.

Last night, for the first time since the post Keppra improvement, when I went to bed I couldn’t get to sleep for a long time because I was still burping. 

In five days I’m supposed to start taking a larger dose of this Trileptal. I’m leaning towards deeply concerned. 


All I’ve Got Going For Me
July 15, 2006, 1:17 am
Filed under: Brain Bits, Dr. Neuro A, Faces, Fear, Husband, Memory, Seizure, Words

Really, my brain is all I’ve got going for me. I guess this might be true of everyone when it comes right down to it, since you know, it makes you take in air and metabolize nutrients and all that.

But in the world, some people get by on personality while still being idiots and some people get by on looks while still being idiots. Some people, people like me, just get by on their brains. I don’t have my father’s charm, or my mother’s beauty.

What I always have had is a freakish combination of their brains, both of which were pretty spiffy all by themselves.

So it’s my brain that gets me a job I can put up with, have a little fun at, survive off the income from, and still not get stuck with so much responsibility that I want to carve my own spleen out with a spoon just to be under a little less pressure. And it’s my brain that gains me my closest, dearest friends because they are all a special type of people: smart, wicked humors, deep curiosities about a wide variety of subjects, outrage over injustice, and the sense to know good beer even if they still choose to drink pig swill. My brain keeps me out of trouble, and my brain entertains me to no end. My brain attracted my precious husband regardless of what he says about my boobs.

If you take all of that into consideration you can see as how the thought of my BRAIN not being right could be, well, a little disturbing.

I am:

Losing words

Having trouble getting words out of my mouth

Having lots of trouble focusing a given task

Having lots of trouble remembering anything – where are my keys? when is my next physical therapy appointment? do I have any clean underwear? where the hell is that building I’ve driven to a hundred times in my life?

Unable to recognize faces

Making bad decisions

Using bad judgement

Doubting myself and my perceptions

Having lots of trouble with conjunctions and other small words when writing

A couple of these things I’ve had trouble with all my life. Some of them are new, post accident. They have all gotten a lot worse over the last six months.

The burping, which Dr. Neuro A says is seizures, started about a year and a half ago. The accident was two years ago.

I am terrified that I am losing bits and pieces of my mind and that it is going to continue to get worse. I am terrified that one day I will wake up and not recognize my husband’s face, just like I didn’t know him in the trauma center. I am terrified. 

The first thing I remember.
July 12, 2006, 1:19 pm
Filed under: Brain Bits, Faces, Husband, Memory

The first thing after it happened is a fuzzy, dreamlike picture in my head. Actually more like a tiny 5-10 second clip that only happened inside my brain – there is no video, only an awareness of a very low level of conscious thought.

I know I am inside from the quality of the light – the whiteness. I don’t remember seeing the whiteness, only being aware of it. Apparently I had a right arm. No other body but apparently a right arm. And it was strange. It was tremendously heavy. And from the elbow to the end, it was about the circumference of a basketball. I feel like I waved it around in the air. I am told I tried to but was tightly tied down and couldn’t. I am told I struggled a lot.

I don’t actually remember the pain. I only remember the memory of the pain.

The next thing after it happened is a true memory. It is from the perspective of my own eyes, even though I didn’t at the time have any idea who’s eyes I was looking through. It is a face. I am laying down on my back. The face is looking down at me. It is a kind face, and I desperately want to know that I know the face. I’m almost sure I know this face. I remember being so incredibly afraid that I didn’t know for certain who the face belonged to, but I knew it was the most important face there was. I remember asking the face, “Are you Husband?”

And I remember the face changing into my husband’s face and I remember his voice, but not quite his voice. Instead, a voice wracked with pain and emotion. A voice I had never heard before, not in 13 years. And I remember the smile because it was the smile I know and the mouth said “Yes” and maybe “Honey” or “Wife” but I know it said “Yes” and then “I’m Husband.”  I think that his fingers touched my face then but I’m not sure. Maybe I made that up because it comforted me to do so. But it’s something he would have done naturally, if he was allowed to touch my face at that time. I don’t know.