Ain't no sunshine when she's gone.
It's not warm when she's away.
Ain't no sunshine when she's gone
And she's always gone too long anytime she goes away.

Corny perhaps, but fitting. Today I decided fitting was more important than original.

So it's cloudy and chilly for the first time for weeks. A 60 degree day dropped in the middle of an 80 degree month like a drop of a water of a hot skillet. The bubble holds is own, dancing for a moment before dissipating like it was never there. I'm enjoying it. The gray days are much more to my liking than the bright ones. Sitting at my desk with a cup of coffee under a blanket contemplating the last few days, and the days that come after.

So yeah, I have a girlfriend now. Kinda. Sorta. She lives in Southern California. I... do not, and that seems unlikely to change anytime soon.

Her plane landed on Saturday while I was at dialysis. Left alone and without a car downtown, I rallied the troops (aka Raseny) and found her in Davis Park. From there we spent a lot of time together. Not enough, but a lot. A couple of sunsets and sunrises, and some long hours in between. We saw The Dark Knight, drove out to Multnomah Falls, and spent a lot of time sitting around talking. As weekends go, I've done far worse.

Her plane left on Tuesday while I was dialysis. My first day coming home to a completely empty house now that Beth has a job. My room still smells like her... I think. My sense of smell is all messed up, but I get this lingering itch in the back of my brain and this ... sensation... that reminds me of a smell, and that reminds me of her. So I fell in my bed and slept for over 12 hours. I guess I needed it.

And now it's Wednesday, and the sun won't shine. The air won't warm, and the smile won't leave my face. There's coffee, warm food, and a perfectly gloomy day. The only thing that would make this better is if I could make 1000 miles not so far away.

It's been a long day. It began at 12:50am Friday morning when I woke up after falling asleep when I got home at dialysis. Now it's 12:54am Saturday morning when I'm getting home and trying to fall asleep. Over the course of 24 hours I've:

- Saved a universe and become a god... again

- gained 7 levels in Age of Conan

- found a new vascular surgeon (my appointment is on the 21st. Wish me luck)

- been treated to sushi

- seen Hellboy 2 with Chris, Julia and Raseny


It's been a crazy couple of days. Although circumstances seem to be going great for the people in the nearest vicinity to me, my situation is static. Ellen has a new job making great money. Beth (my aunt) starts a new job next week making good money. Raseny has so much good stuff going on I would need a seperate blog entry just to talk about it all. Having the people around me doing well and feeling good about themselves and their lives is sort of infectious, and makes me feel like my life is somehow getting better along with theirs.

And in some ways it is. Ellen's new job means more opportunities for me, including a new place to live, and a few trips to visit people. Raseny's good fortune allows her to do things like take me out for sushi, and makes her available for things like driving me downtown for donuts and such. Beth's new job means she'll be out of the house during the days instead of haunting it like some judgmental specter like she's been doing for the last year.

As for me, though, things are very much the same. My arm today was significantly more swollen then a few days ago. Enough that Raseny repeatedly commented on it. Something she hasn't done before. It also hurt a lot more than usual. Even keeping it elevated most of the day, getting out for a dinner and a movie required the help of some oxycodone to keep from gnawing my arm off.

Ellen's fortune means that my primary source of psychological support is now 1000 miles away. Beth's job means that there is no one to help me should something go horribly wrong on the days I don't have dialysis. Meanwhile Raseny's twist of fate... doesn't really hold any negative consequences for me. Her story is pretty much awesome.

Maybe my situation could best be described as "stable." Although my arm is a hassle (and by "hassle" I mean constant, mind numbing agony), it's also not causing any new life threatening problems. There is nothing at the moment that indicates an imminent return to the hospital. No frightening scenarios poised and ready strike can be seen. And this is a good thing.

It feels delicate and dangerous, though, this stability. I worry that a misstep here, or a stumble there (both figuratively and literally) could lead to a whole new mess of woe. The more I think about the last 7 months, though, stable is probably as big an improvement for me as the other changes of fortune have been for the people around me.

Maybe my life isn't all roses and gumdrops, but I'm alive and I'm stable. Tonight I think I can be happy with that.

"Laugh, and the world laughs with you; weep, and you weep alone."


After all this time I am still incredibly bad at dealing with stress. You might think by now I would have a handle on it, but I still easily reach a point at which I shut down. I stop responding. I just want it all to go away. I'm there... again. How many times that make this year alone? I don't even know. I just know that it's seemed like too much work to initiate activities, to stay in touch in people, or to keep things in order.

And this is nothing new. My complaints, my anger, my frustration, my sorrow... these are nothing new. Even the ever present pain in my arm has been going on for a year now, and I'm tired of it. I'm tired of talking about it. I'm tired of thinking about it. I'm tired of trying to deal with it. And that adds up to a whole lot of tired.

One result is that I fall out of communication with people. The question always come up, "So how are you?" Well I'm fucking awful at the moment. My arm is in constant pain. Medicare is still occasionally denying charges (although I was told by the social worker I was working with it was handled). I haven't found a new surgeon to replace the bumbling idiot who continually fucked up my arm over the last year, and I need to find one soon to take out the catheter in my leg.

Yes, more surgeries. Only now Ellen won't be here to help me recover afterward. She'll be back in Southern California, which is awesome in terms of money and opportunities, but it leaves me fending for myself again. That was fine 2 years ago. Even after the car accident I was still in good enough shape that I felt I could take care of myself (with a little help from my friends, of course). Now... now I don't know.

And that's the part that keeps bugging me - I don't know. I don't know what I'm capable of anymore. I don't know what my options are, or well I can manage them. The self-doubt is crushing me at the moment, and I haven't wanted to talk about it. It has a lot to do with that line above the cut. I know I'm on my own in this. I'm not entertaining right now. I'm not having a good time, and I know no one else wants to hear about it. So I don't say anything. I don't post, I don't call, I barely stay in touch. It's a failure in my personality that I haven't been able to overcome, and one that I have watched time and again ruin perfectly good friendships with people.

But I also know that if I have nothing fun to say, I shouldn't say anything at all. Either that or I'll have to lie people. Sure, I'm fine. Things are good. Yup, all's well. I get a little tired of lying too.

So I'm going to sleep. For like a week or so.

It was just another Wednesday. I fell asleep around 4am. When 12:30 rolled around I was still asleep, and comfortably so. Dreaming of people I hadn't seen since high school in a house I hadn't seen in 5 years. Dreams of the past, and things I will miss. Then the phone rings.

It's Ellen. She's been down in Southern California since Monday. Today she had a job interview with Toyota, the company she used to work for before she moved to Oregon. They had a testing job opening so she thought she'd try for while she's in the area. She arrived at 11am. The interview was done at 11:30. At 11:45 she was on her way back down to Orange County when her phone rang.

She got the job. Quick, simple, easy - she got a job. A great job too. One that pays 3 times what she was making in Oregon, with people she knows and feels comfortable around. Of course it's in Torrance, which sucks, but that one negative didn't stop her from taking the job on the spot. She starts on the 14th.

Now things start to change. Some of those changes I welcome, and I'm pretty excited about. Like moving out of this house. That may not happen for a month or two, but it will happen. There's money now. Money for moving, and car repairs, and gas. Money for computer parts, and new clothes, and dinners at nice restaurants. Money for tastes of freedom like trips to the coast, and trips to Southern California.

One phone call and the rest of the year looks completely different.

Every hospital stay comes with a story, and this one is a doozie. The events of the last 36 hours are, in my opinion, appalling. Rarely have I ever been this mad at a doctor. The last time was at OHSU, and the perma-cath incident. In fact the two of them have some things in common, in that I was subjected to an unnecessary surgery that did me no good at all. The difference was that this time I was told it had to be done, and that I was risking my life if I didn't do it. Spoiler alert: That turned out not to be the case.


Technically it started Wednesday night when I was cleaning my arm. My left arm, the one where the dialysis access used to be and the one that has gone through so many surgeries over the last couple of months, looked bad. It's not healing right. There is still, 3 weeks after leaving the hospital, significant discolored discharge. It's also still very swollen and sensitive to touch. I was worried. What I've been doing is what I was told to do - change the gauze every night, and keep the area clean. I use the anti-bacterial soap the hospital gave me when I was on peritoneal dialysis. It's very strong stuff.
While I was soaping up my arm Wednesday night my arm started bleeding. A section of arm where are the incision scars up near my elbow had opened up, and some blood had started running out. It wasn't a big deal. It was a small bleed. Big enough to freak out Raseny, but not big enough for the ER. See I'm a pro; I know these things. I slapped a piece of gauze on it, applied some pressure, and it was fine. It did demonstrate to me, though, that my arm just isn't healing right.
The next day, Thursday, I went into dialysis, and asked that my Nephrologist (Dr. Hawkey) be contacted about putting me on some antibiotics. It was clear to me that although Dr. Alexander was happy to ignore the problem (he had told me twice in one visit and one phone call that I would be fine), things were not getting better. Indeed, if sores were opening up at points where stitiches were, something was wrong. So I asked the dialysis nurse to hit up Dr. Hawkey who has proven to be much more responsive to emergencies.

Well they didn't. They called Dr. Alexander's office, and here's where things get aweseome.

Dr. Alexander was away, but Dr. Geary was still around. Now I've dealt with Dr. Geary in the past, and he has proved, repeatedly, to have no idea what's going on. He told the dialysis nurse that I should go to his office ASAP after dialysis. When I arrived at his office I was told he was already waiting for me at the Operating Room over at the hospital...

Yeah, read that again. He fucking scheduled me for surgery when all I asked for was antibiotics. So I refused. I explained the situation to the nurses, and what did they do? Tell me that I needed this surgery. That Dr. Geary had said I was going to bleed out if I didn't do what he wanted. Read that again as well. I was told I was going to die unless I had this surgery. Now.

I'm going to skip what happened next as it's fairly embarrassing. The short version - I had a nervous breakdown. I knew what I was being told was false, and that all I needed was some antibiotics to take care of the localized infection on my arm that was interfering with my bodies ability to heal. What Dr. Geary wanted to was go in and try to make improvements to Dr. Alexander's work without a) reading the case file, or b) consulting with Dr. Alexander. I knew this. I said as much, but the nurses wouldn't listen. They had a job to do, and that was get me over to the operating room. They appealed to my mom. They told her that I was risking death by not having this surgery. She, of course, jumped in to get me over to the operating room. I tried to explain to her what was going on, but the mess that is the veins and vascular pathways of my left arm is difficult for me to understand, let alone explain.

While the nurse is telling me I don't want to bleed out, I remembered what happened when I was the hospital three weeks ago. One of the nephrologists and I had a fight over whether or not I was going to be released that day. He wanted to keep me, and I said they couldn't do that. I was going to put on my clothes and march out that door. Here's what he said to me:

"Well you have that right. You could do that. But here's what's going to happen if you do. I'm going to make a note in your file that you refused to follow the advice of your physician, and you are not going to be eligible for a transplant. They do not give transplants to people who disagree with their doctors."

And as I'm sitting there preparing to tell the nurse to fuck off and go home, that exhange plays through my mind. Does Dr. Geary have the same authority? Do I want to take the chance? I'm still a wreak from the last round of surgeries. I don't have my strength back. My arm is still sore, swollen and painful, and they want to go and add another incision to the pile of wounds that have to heal. "How?" I keep wondering, "How is that supposed to make things better?"

But eventually I gave up. The sorrow and worry in my mom's voice, and the constant barrage of "You need to do this," from the nurse eventually wore me down. Along with the idea that if I say no I would be blacklisted from approval for a transplant proved too much. I gave up, and I started the march over the operating room.

The surgery itself was no big deal, but you know why it was no big deal? Because he didn't do anything. Once he had cut me open he saw why Dr. Alexander had left my arm in the shape that it's in - it's a fucking mess. The better surgeon had already done all he could, but this asshole thought he could do better. He ended up doing nothing. Oh wait, no that's wrong. He couldn't close down the vein he wanted to because he couldn't reach it, so he sealed another vein further up. Brilliant right? Because I haven't had grafts and other operations in that area to try and releive the pressure on my arm by routing other veins to other arteries. Well he decided one of them should be closed.

Tonight my arm hurts like hell. It's more swollen then it was on Wednesday, and 20x more painful. The left arm is in constant pain, and his only solution was to up my oxycodone prescription to 15mg every 3 hours. I haven't taken any yet. I know, when you're in pain, take the pain killers, but upping the dose of oxycodone is not a solution. I will grit my teeth and bear this as long as I can.

Tomorrow I will go to dialysis, and I will tell the dialysis nurse that when I say I want her to contact Dr. Hawkey, I want her to contact Dr. Hawkey. Tha Dr. Alexander is no longer my vascular surgeon, and I will no longer be consulting him on any condition with my arm or any other matter. On Monday I'm going to call one of the nephrologists who I've seen over the last few months who aggressively hinted that she knows there are better vascular surgeons out there. I'm going to take her advice.

And I don't know how, and I don't know if it's possible, but I want to pursue a lawsuit against Dr. Geary. Lies and deception were used in order to get me into an unnecessary surgery that may have made my situation worse. I don't really know what constitutes malpractice, but that sure sounds wrong to me.

Oh, and I still don't have any antibiotics.

Today is close to coming to an end. 6pm and I'm exhausted. That probably has something to do with trying to chase a very old dog that tried to hobble out the front door and down the stairs. In his youth, his escape could mean hours of pursuit. He was a fast dog, and fiercely independant. Now, well he's still independent and headstrong (for a dog), but he doesn't move like he used to. Stairs present a challenge for his old legs. Lemme put it this way - once I pushed him away from sniffing at my food and his back legs gave out. This resulted in him just kinda laying there, his back legs splayed out to either side, pitifully staring up at me as if to say "So, uh, I could use some help here." So now when he tried to run out the front door to play with the neighborhood children it was more of a desperate saunter. A sort of agonized canter down the front stairs. Now what's more sad is that it took me the entire time it took him to get down the front stairs to catch him, but I did. Of course it took every ounce of strength I had to hurry down the stairs grab him, and pull him back in to the house. After walking back the stairs to room I found myself exhausted. I can only assume the dog is in the same shape I'm in. Neither of us are as young as we used to be.

That's the latest event of the day. A couple of hours ago Ellen and I went and saw The Hulk, which was AWESOME. I'm glad they decided to do a new version, and that it ties in so nicely with Iron Man and the upcoming Avengers movie. It gives me hope that an upcoming Captain America or Thor movies woven into this same series of stories aren't going to suck either. Although I still don't have high hopes for Ant Man. I mean... come on... it's Ant Man. There is no way to make Ant Man cool. It just ain't happening. Maybe they'll ditch Ant Man and substitute him for Hawkeye, or maybe Quicksilver. Oh! Then they could set the stage for an Alpha Flight movie! That would be sweet. Mainly because I have a bunch of Alpha Flight comics that are absolutely fucking worthless, but might become worth selling if they make a movie out of them.

Tomorrow is the meeting with the transplant coordinator. 3 hours or so of questions, tests, and evaluations. Hopefully it will go well and we will proceed with the plans of transplantation.

In the meantime Ellen, Raseny and I will be going out to eat somewhere in Portland. Money is about to become really, really tight around here probably making this one of my last nights of culinary indulgence. I don't know where yet. Menus will be looked at soon. Then it's bedtime so I can be up early for what may be one of the most important meetings of my life.

Sometimes it's good to remember where you came from.

This is a bad year. It started bad, and it's getting worse. Well, maybe not for me. It's hard to get "worse" than where I was in January, but there are parts of my life that while stable in January, are falling apart now.


Both the vascular surgeon and my nephrologist have made it clear that pharmaceutical narcotics are mine for the asking. And not that cheap vicodin stuff either. We're talking the good stuff - oxycodone, hydromorphone, etc. etc. Although I've been slowly but surely weening myself off the painkillers, I find myself tempted to take them up on their offers. Things are looking incredibly bleak, and it would be really really nice to not feel anything for a few months.

I don't know where to begin to describe the frightening landscape that is my future. I guess I'll start with this house. The lease is up the end of July, and although this isn't the place I want to be living I don't have the money to move. Living on my own is not much of an option, and only has been possible before through the generosity of Ellen. Well her contract with Intel ends next week, and she has no jobs lined up. She's gone on plenty of interviews, but no one has hired her. It's unbelievable to that she can't find a job anymore, and frightening to me that the day is fast approaching - and may even be here - where Ellen can not only not support me, but can't support herself. She can collect 6 months of unemployment, during which she'll still be looking for a job, but the bigger issue hangs in my head and distracts me from all hopeful possibilities.

My mom is old. Soon, too soon, she'll need to be taken care of. Some very grim realities are way too close, and I don't know how to deal with them. I do, however, have a full bottle of oxycodone, a television, and the internet. Perhaps not a good strategy for dealing with life, but on enough pills I don't imagine I will care much.

But I haven't walked that path yet. Much like suicide, I consider this an option for another time. Also like suicide, I consider that path giving up. I've fought long and hard to live my life with a semblance of freedom. I may be dependant on dialysis and my mother, but that doesn't mean I stop trying to live my life my way. I've never surrendered completely to my despair, although I have often let it sway my decisions. Part of me still feels like if I were to lay down and numb myself out to the world around me I have given up, failed, and I will have lost part of me that is precious.

But part of me really just doesn't want to feel anymore.

That is, of course, only part of the picture though.


The brand new social worker at my dialysis unit has offered to help me deal with Medicare. Ellen got a hold of Mercury Insurance (the folks who insured the car I was in at the time of my accident), and they are more than willing to help us clear up whatever bullshit Medicare is claiming as reason to deny some of my medical bills.

Ms. New Social Worker has also recommended me to Occupational Rehabilitation. I don't know if they'll be able to help me, but it is possible that they can and will pay for me to go through a vocational school program to give me some kind of marketable skill. It's also possible they won't, but until I hear them say to my face there's nothing they can do to help me get a job it's worth trying. I'll be going to their office on Wednesday afternoon for an evaluation. It's unlikely to result in a job soon enough to pick up the slack for Ellen losing hers, but it may eventually result in the possibility of regular employment. That would be a welcome change of pace.

The biggest news is that I have been contacted by the transplant coordinator. Ellen and I will be meeting with the transplant team over at Good Samaritan hospital on Monday afternoon. This is it. This is where it begins. They will tell me if they think I'm eligible for a transplant, and what I need to do to proceed. I'm excited and nervous and hopeful and worried. You know, all those things that you feel when something potentially life changing is about to happen.

So here I am, at 2:42 am with just enough energy to type this out, but too much energy to fall asleep. Instead of drugs I've been distracting myself with my computer. Measuring the system temps, playing with overclocking, and looking at the price of third-party video card coolers. There are so many things beyond my control that affect me directly that thinking about them makes me ... well, want to give up. Swallow the pills, and wait for the end. It has to come soon right?

But I don't give up. Not for long anyway. It's not who I am, and it's not who I want to be. Not yet.

I don't know how to embed this video in SG, but it's a great story. It's the kind of thing I thought of doing a couple of years ago.

http://cosmos.bcst.yahoo.com/up/player/popup/?cl=8132827

This afternoon I made one of my regularly irregular visits to have my left ear re-tubed. My hearing at the moment is awful. The tube in my ear fell out shortly before going into the hospital, and without it the world sounds like my head is underwater. Sound is muffled and distorted. Honestly, for me this isn't a problem. However the people who have to deal with me cranking up the volume on the tv, or repeat things to me three or four times before I understand them find it incredibly annoying. So I went in to get the goo stuffing up my ears drained, and a new tube put in.

It didn't work out though.

When Dr. Kaplan (aka "The Ear Guy") first entered the room I asked about fixing my right ear. It has a hole in the eardrum, and has been 90% deaf for a long time now. He recommended a surgeon who can repair it. That's a good thing. I'd like to have more of my hearing back. Then he started examining the other ear.

The moment the steel hit my ear my heart started racing. Suddenly I remembered what was about to happen. The injection of lidocaine into my ear canal, and the cutting open of the tissue to get at the stuff that had to be suctioned out. I watched him reach for the needle, and I started hyperventilating. The thought of more pain triggered the memories of the last few weeks, and I found myself in the midst of a panic attack.

I haven't found the words to talk about those last two trips to the emergency room. The stitches in my arm without anesthetic, and the moments before they wheeled me into the OR on my birthday. There are levels of pain I don't think adjectives alone can ever touch. If you've ever tried to imagine what frontier medicine felt like you might be close, but until it's your flesh they're working on you can't ever really know what it's like. There are degrees of pain that the mind can't imagine, only live through and try to forget.

Well I haven't forgotten yet. I'm not ready for any degree of pain beyond having blood drawn. I'm really grateful that they're using a catheter for dialysis right now since that doesn't require any needles, or breaking of the skin. The thought of that needle inside my ear canal, though, that was too much. So my hearing wasn't fixed today.

The surgeon he recommended to fix my right ear should be calling me in the next few days. He can fix my left ear while he's in there, and I'm unconscious.