what is today?

I sometimes wonder where time goes and often forget what day it is. I think I'm busy and I don't really care, because once I wake up, kill some pain, I'm off to work.

Oh, "off" to work is meaningful. I grab my computer and a whole process begins in my mind.

As I always tell other writers, there's a story in everything, but just as much a story in nothing.

I wonder sometimes how people look at my blogs after I've been to a meeting. I'm sure they wonder what I'm going to say on the blog.

But they never know, because I never know until I think about it for a while.

And some people are scared of me, oh so sad, because there is nothing safe to say around me, I can make anything into a story.

I've been asked "where did you come up with that?" Why it's the muses, they talk to me.

They have so far not asked me to kill anyone so I think its pretty safe to speak with them.

Today, I have a list as long as my arm to get done, and I might accomplish some of it. Driving away from the house is part of the day. I wish I could drive my bed all over town.

With my pillows behind my head, a steering wheel pops up, and off I go. No need for air conditioning and I have blankets for heat.

But up here in this god forsaken valley, I'm sure the cops would pull me over.

"Do you have tags for this thing?"

"Yeah, it's on the end of the mattress don't pull it off."

"Oh."

"Anything else officer?"

"What is that under your blankets?"

"Oh, this, this is my bong. Want a hit?"

"Just get out of here and drive safely."

Yeah right...

Another day, actually a Friday, another round of whatever the universe has whipped up for me.

I'm so impressed so far, I just can't wait to see what's next. Maybe locusts in my bathroom, or rabid animals chasing me. It really could be anything, I don't count out any possibilities anymore.

When my life got this weird, I knew that it was "unpredictable" and there is no controlling it. So, I became weird and unpredictable too.

Now, I just don't care anymore, its the way it is and what will happen will just have to happen. Fuck it.

I'd rather be dead than not be able to work

I consulted with a NP, nurse practitioner today, who I am very impressed with at this point. Not only was their intelligent understanding and valid explanations, but this man actually knew what my original disability was, which nobody has ever actually known the first time I told them.
(Yeah, I had to have something strange. Go figure.)
I was damaged by an aminoglycoside antibiotic called Gentamicin. It burned out my inner ear, obfuscated my vision, and took away my balance.

But that was ten years ago.

My father recently asked me if I remembered what the date was when it happened.
I got snippy with him and said you never forget the day your vision and basically whole life changed: it was October 1, 1999.
For two years after that I worked to put on weight and muscle and reached a point at 130 pounds where I thought I could start my life up again. I learned to drive, read, catch a baseball, and walk all over again.

Funny that my therapy was taking care of two children, my cousin's kids. One of them was just learning to walk when I was too. I had gotten so strong I could carry one child under each arm and throw them in their rooms for their often much deserved, "time outs." They were a gift. They probably have no idea what their presence in my life meant to me.

Unfortunately, Grave's disease came along, to strip me of all the muscle and health I had regained. Grave's is an autoimmune disease which attacks the whole body, but specifically likes the thyroid and the eyes.

I went in today not for either of these issues, it was about the head injury which has left me with chronic damage to my neck. And constant pain.

As we talked about all of these issues I suddenly understood in a very real way that I am not going to get better. And I can accept that truth.


I told the NP, don't think you're going to fix these things, because that's not what I'm asking for. I'm asking only that you put a patch on me and let me work.

Realizing that I cannot sit at a meeting and take notes without hitting out of control pain levels and finding that my arms are numb, and my fingers feel like bees are stinging them, I just want to function to whatever ability I can now.

Sitting at a desktop computer is becoming very problematic for me as well. But to hell with it, I'll work in bed, with a laptop. And I'll attend meetings but not take notes, just go home and pull the quotes from the video and audio, while lying back on pillows.

There are problems, but then there are ways of getting around them, for now.

I was quite pleased also with this medical "professional" that he understood and did not make me feel diminished that I'm bi-polar.
After I explained my problems with taking medications, the mania/depression trigger which comes from pain, he was not overwhelmed or even fazed by the situation. I truly appreciated that.

I'm a mess, but a working mess. Blogging and writing isn't as easy for me as it may seem. Sometimes its downright fucking tough.
I cry a lot these days, but not out of pity for myself, but because it helps reduce the stress. I cried in Lens Crafters the other day because I had reached a point of pain I couldn't handle.
The people adjusting my glasses apparently thought I had an issue with their glasses. ? I didn't feel like explaining it to them, and just let the tears roll as they bent and reshaped the ear pieces of my sunglasses.
I'm realizing I have nothing to lose anymore. Who cares if I cry in public, I don't.

The idiot who threatened me with a gun earlier this year should have known he was the one in danger. Shooting me would probably be a gift, but it wasn't Christmas, so it didn't happen.

My stepfather, sort of, and one of my biggest supporters is dying of lymphoma. When we talk we always laugh about our respective situations. Neither of us is afraid.
I told him he's going to be bored when he dies, because I was already there. (I'll be posting the picture of the bathtub which I hit because of my original disability, you might be impressed that I'm still here)
My short visit to the death side of things, made me realize that me and everyone else have nothing to fear. It's quiet and peaceful, but I'm going to wait a while before I go back. I've got things to do. Situations to rectify and fights to write.

And I want to show my brother and sister about strength of character. My brother will quit drinking and I will quit smoking this week. (Oh, boy, the blogs should be interesting.)
And Lord help the Kern Valley Healthcare District next week at the board meeting. They thought the "shock and awe" campaign was nearly over, why, its only just begun.
Like my stepfather tells me, the most dangerous person is one who has nothing left to lose. And that's me.
So, doctor's do what you have to, but keep me working.