(no subject)
patient_travelr
Hello Livejournal. It's been a long time. I can't say I've missed this place, although it is always on my mind. I think about writing here nearly every day, but the motivation to do so is easily replaced by Facebook games. I have taken solace in being easily distracted. Sometimes all I can do to deal with life is let time pass.

Things have changed for me in the last two months. For the worse I'm sad to say. After years of inaction my Wegeners has resurfaced. In response I'm back on a very high dose of Prednisone and Cytoxin. And it seems harder this time than before. I feel wrecked. I don't remember is being this hard before; this devastating.

I thought I had more to write. There was so much going on in my head but when faced with the box to type in I'm unable to put these feelings into words. Fear; there's a lot of fear. Pain, there's a lot of that too. Physical and emotional. Also this feeling that no one can help me. Not even myself, and that's part of what's really terrifying. I don't feel capable to deal with this.

Maybe it's because I'm older now. The cytoxin never really felt like a chemotherapy drug before, but now... it feels different. Like some important part of me is unable to be activated, and my whole body is suffering for it. The prednisone makes me crazy. The cytoxin makes me weak. I went through a couple of surgeries a few weeks ago, and it doesn't feel like I'm healing right, and that reinforces the fear. The helplessness.

I'm in a bad place, and I don't feel like I have anywhere to turn to, so I'm writing this down. Trying to get it out of my head. To go through the process of expression as a means of relief. It is another distraction, and offers another little sliver of solace. I need all I can get right now.

You know, I used to live alone before I knew ya
patient_travelr

(no subject)
patient_travelr
Good times show us who we could be. Hard times show us who we are.

Blood again. There's always blood when things go wrong in my life.But I guess that's always been my problem. Bad blood. Now it's here again. Blood in the sink, in the floor, on the walls. When there's blood it always looks like a lot, even when it's only a teaspoon. Tablespoon maybe. But blood, it sprays, and it stains. Then it sticks, and it gets impossible to get rid of. I've seen a lot of my own blood over the years. It doesn't freak me out anymore, just bothers me. It's just such a pain in the ass to clean.

The last 3 years have been pretty good times for me. Some minor health inconveniences but really, it's been good times. It gave me a chance to see myself in a different world. What I would have been like if I could have lived a normal life. I like who I could have been.

But that's not me. Who I am is the guy cleaning up blood from the carpet. His own blood. I'm the guy who bandages his own sores, then calls it a night alone on the couch. This is me again. I got three years of happiness to see what will never be, but it was just a break. A rest stop before getting back on the road.

I feel pretty dark at the moment, but that happens. I don't know how long it will be before I swing positive again, but I think it might be a while. I look back over the last 7 years of blogs, and I see what I usually have been. My survival required acceptance of certain grim realities. Loneliness is not a feeling, but a way of life. The understanding that I am, now without a doubt, unable and unwilling to maintain intimate relationships is a basic tenet of that way of life. The sense of humor will follow. A cynical way of understanding that what I do doesn't really matter beyond creating one moment of laughter in a steady stream of emptiness and hollow repetitive motion. Life is the constant repetition of simple, boring tasks, broken up by the occasional extreme of positive or negative experience. At least I got to experience a lot of positive. I got to see what I might have been if I had ever been able to live a normal life. It would have been nice.

(no subject)
patient_travelr
Ellen is giving away my old laptop to a friend. I'm on it now, digging through the files looking for anything I want to save. This was the laptop I "met" Cody on. The laptop I had with me during all the hospital stays and trauma of three years ago. There isn't much on it worth saving. I found a few things, though. Pieces of journal entries I never posted. The first pic Cody ever sent me (I'll be keeping that). Other than the pic, nothing I'm excited to see again. However, I thought I'd post the snippets of journal that I don't remember posting.

(May, 2008)

the dialogue moving through my head while the dilaudid is working moves too fast. The conversations take place in real time and it's difficult to keep up with.Especially when you can' t type well because of problems with hand eye coordination from the painkillers, and my own need to correct my spelling in realtime. And, of course, using a laptop keyboard instead of a PC keyboard causes problems as well.

the seperation is weird though. DIlauded causes these waking dreams that are stored like real memories, and causes real memories to get stored in memories as dreams. In this numbed state the emotions attached to dreams seem just as real as the real thing, and the real thing is numbed and watered down enough to make it all seem like a dream. I've spent the last few days asking Did i say that, or think it, or dream that I thought it? The imagination is strengthened while meatworld input is weakened allowing them to blend and merge, and confusing the emor enough to raise the quetions that you can't remeber asking.

i know ther's a big world out there like the one I saw on the screen. In my living room late last night it was almost too bright to see. I know it's not a party if it happens every night

(June 2006)

A year ago, when I moved into my apartment, there were no wifi networks available within range from the pub next to my house. Tonight there are 5, and, lo and behold, one of them is unsecured. It's called Bye-Bye-Bitches... and it's unsecured. This connection kind of sucks, though. I'm guessing I swiping his bandwidth while he's getting his clocked cleaned on Battlefieild 2 or something. I wonder if he misses the couple of byts it takes me to log into and update this website? The world may never know. And by "the world" I mean me, because if I don't hear it, it didn't happen. Fer reals, yo,

In other news, it's hot. It was over 100 degrees here in Portland. I think it was even hotter in my apartment, but since I was gone at dialysis during the hottest hours of the day, that event as well never really happened. Tomorrow I am getting the fuck out of my apartment. I think I'll go see a movie. Make suggestions to me, so I don't go see something that makes me wish I'd stayed home. Snakes on a Plane isn't out yet, is it?

This will be my first trek downtown solo since my accident. Wish me luck



Wow. I've been here for over 6 years. I guess it's about 7. Ellen and I were talking a few weeks back - we sure didn't see any of this coming. Never thought we would find ourselves in Oregon. But then there are things I never thought I'd see, but they happened. Sometime in the next year or so I will see the world from the view of someone who can eat and drink what they want, when they want. Just a little more freedom, just a whole new life. I don't have words for this, and that seems pretty common. I keep wandering into situations where words fail me. The enormity and uncertainty of a whole new life. Again.

(no subject)
patient_travelr
In April of 1996 I started on dialysis. Since then I have 3 treatments per week, every week, for about 15 years. That's 2340 treatments of hemodialysis, give or take. At 2 needles per treatment (not counting infiltrations, bad sticks, or any other reason to get stuck more than once) that's 4680 holes punched into my arms and legs with 15 gauge dialysis needles. At 3 1/2 per treatment that comes out 10 1/2 hours per week, and 52 weeks per year comes to 546 hours per year for a total so far of about 8190 hours spent on dialysis.

These numbers went through my head on the morning of February 14th 2011 as I read a letter from Legacy Hospital telling me that as of now I am officially on the Kidney Transplant Waiting list.

The average wait for a person with my blood type for a donor kidney is around one year. That's 156 treatments more to go. 312 more needle sticks. 546 more hours of hemodialysis.

It's something I thought I would never live to see, and the countdown has now begun.

(no subject)
patient_travelr
Some people will tell you that all there is what you can see; what you can touch. I suppose that's supposed to help dispel belief in superstitions and all manner of gods. It seems dishonest to me. Not because I believe in some kind of fairy wonderland or Asgard beyond the horizon, but because I know the limits of human vision and how little people can feel when they want to ignore things. Turns out there's all kind of things going on all over the place. Most of which you never see. It also turns out that beneath your skin are millions of cells doing things, processing stuff, and moving around that you never feel. Reality is way outside of your ability to directly perceive it.

I say this because despite my circumstances, and despite the evidence I've been given that should prevent this, I am hopeful. It's one of my strengths. Even at the lowest points, when there looks like nothing to inspire it, I find hope. It hsa kept me alive, and kept me mostly happy. Hope has been an important tool, and I encourage anyone to develop a sense for it. Hope there is something going on beyond what you can perceive. Hope that there is something going on beyond how you feel right now. Because there is. There always is, and sometimes it's something amazing.

I know somewhere in the world outside my apartment there is a pretty girl thinking about me. At least, I hope so. I can't see her. I can't touch her. But I have hope that soon I will.

I know that today I have dialysis, but I hope that sometime this year I won't need it anymore. I'm committed to finishing this transplant process. When I finish the last test they need me to do they will put me on the Oregon list for kidney transplants, and within a year one will show up. I hope it's sooner rather than later, and I hope that the kidney is as perfect a match as I can get.

After I get the transplant I have hopes for enjoying life. There will be vocational rehabilitation and learning to have kidneys again. I hope I get to drink a lot of beer, and pee in the snow.

I have hopes for a family, for a life with the woman I love, for free time with friends, journeys oversees, of strange and amazing food and drink, and of a lifetime of joyous moments. Along the way will be struggle, work, hard choices, unpleasant emotions, and the occasional turmoil. These cannot be avoided no matter how hard I try. I hope that I will be able to deal with them well, and minimize any hurt to myself and the people I love.

I've lived through times when it seemed all hope was lost, but even then I found something to hope for - that I was wrong. Because as much as I like to imagine what's going on under my skin, outside my door, or on the other side of the world, reality has a way of surprising me. Sometimes for the better in ways I never would have thought possible a year, a month, a week, or an hour before it happens.

I hope that life keeps going on. There's a lot I hope I get to do, but mostly I just hope that I get to watch it happen.

(no subject)
patient_travelr
I don't seem to be able to hate anybody anymore. Some people make me angry, sure, but my anger is always tempered with some kind of understanding. They are only human, and don't think the same things I do. Some people seem pretty fucking evil to me, but I still understand their motivations most of the time. Where I used to be judgmental, now I'm just pretty accepting. In all human creations are the good and the bad of our species.

Take religion. I'm an atheist. I see no evidence of a controlling intelligence in the creation of the universe. And in my personal life I only see my own intelligence (or lack thereof) at work organizing and responding to the other intelligences that surround me. I don't believe in any invisible sky man, or woman, judging me for my actions, or requiring me to judge other people for theirs.

However, I understand that religion provides something important for some people. Me, and most of the people I am friends with, are not those people, but I do know a few. Religion offers a sense of community, of belonging, and more importantly for some, a set of easily repeatable rules of behavior. Some people need that. A lot of bad things happen in the name of religion, but that's because people are pretty shitty creatures a lot of the time. They want to do hurtful things, and religion offers them an excuse to do so in the name of righteousness.

Ahh righteousness. If I could eliminate one behavior from the human animal it would be that one. So much is done to earn, maintain, and enforce people's sense of righteousness, and rarely is it ever helpful. In fact, maintaining righteousness requires making someone else wrong, and punishing them for it. It's too bad human beings seem to enjoy punishing each other so much that we will destroy ourselves, the people around us, and as much of the world as we can take with us to do it.

But see I don't blame that on religion. That's people being people, and using their religion as a way to mobilize the community, and call upon unquestionable authority. Organization is a beautiful aspect of life, and humanity has found ways to organize to pretty amazing effect. Unfortunately we are also an angry, violent and destructive species, and we have managed to organize with pretty horrific consequences as well.

Behind everything that makes me angry is a primate brain doing something I don't agree with. But I have one of those primate brains too, and the things I do sometimes make people angry as well. I'm pretty forgiving about it. I understand that people behave differently in groups than they do on their own, and I am unwilling to hold the crimes of one group of people against an individual. Just because someone agrees with something I don't like in principle doesn't mean they are a bad person.

However people who try to force that opinion on me can pretty much fuck right off. I don't hate them for being pushy about their beliefs. Everyone wants the people in their lives to accept them for who they are and to agree with their view of the world. I want the people in my life to accept me for who I am, although I don't expect them to agree with me on how I, or they, should live their lives. What I hope for is people who will love me despite our differences, and who can enjoy our similarities that make us happy instead of focusing on those differences.

I don't believe in an invisible sky cake god, or that my morality is right, or that someone 2000 years ago wrote down the best way for me to live my life. I believe that people are responsible for their own choices and their own lives, but I recognize that not everyone in the world thinks like I do. I also don't think the world would be a better place if everyone thought like I do since my views are based solely on how I've lived, who I've met, and the situations I've dealt with. And most of my life I wouldn't wish on anyone.

If you bothered reading all that then you might just have the patience to be a friend of mine.

(no subject)
patient_travelr
My friends over at Sigh Co. are having a contest. One of the ways to enter is to write a new description for one of their shirts. I chose this one since I own it (and wear it often):


My entry is as follows:

Understated and irresistible. Like a stone from an unearthed tomb, it may appear simple to the uninitiated, but they will find themselves unable to keep themselves from asking you, "What does it mean?" And it will be up to you to decide - do you tell them? Do they deserve the knowledge, and all that comes with the knowing? Is their mere humanity reason enough to spare them? To damn them? Or will you, as I have done so many times, just smile enough to let them know they cannot understand, and tell them, "It's a place I read about."

Posted before, but it's a good song
patient_travelr
and the video always makes me sniffle


(no subject)
patient_travelr
"Be kind, for everyone you meet is fighting a hard battle."
-Plato

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