I don’t think this week could have been much worse than it was. I’ve gotten to that point where all I want is peace, all I want to do is disappear and rest from all of the insanity this life creates. I want refuge from the damage the free will of others can do. I want sanctuary from the pain that comes from simply waking up every day. I want to sink, never to float. I just need rest because I am so tired, in every single way. So tired of seeing the depths that so many unexpected people can sink to.

    I can’t talk about everything that’s happened. I wouldn’t even want to. But one thing I can say is that I’m having surgery tomorrow. It was supposed to happen on Tuesday, this Tuesday past. Like so many other things this week, it got botched up. I went through all the emotional turmoil of preparing for surgery, I went into the waiting room, the cold, horrible, anxious waiting room. I went into the pre-op area, I put on the gown and hair-covering. I sat in the chair, waiting patiently as nurses and doctors came by, asking question after question. And just as it was my turn to go in, just as I thought I might even be ready and able to handle this… it didn’t happen. The hospital freaked. The anesthesiologist freaked. They threw their hands up and said I was too sick, too scary, too much of a risk. That I’d mess up their statistics. Why they didn’t see this weeks ago when it was scheduled and we sent them all of my information, I don’t know. Why they had to put me through all that, then corner me in that sterile room, three large men bearing down on me, talking over me so loudly with their white noise voices… I don’t know. But I hated it and I was so angry. Why can’t they just do it right? If I was that much of a problem, why couldn’t they have caught it before I was sitting there, half naked, and so vulnerable?

    And now I have to face it again tomorrow, although granted at a different hospital. My regular pain doctor, who also happens to be an anesthesiologist, has gone to great lengths to arrange things with the hospital this time so that he’ll be my anesthesiologist for the procedure. It was awfully kind of him, because I don’t think I’d want to face it at all if he weren’t there. I trust him, but I don’t know how I feel about the surgeon. I keep thinking that the surgeon should have cleared things with the last hospital, that it was at least partially his duty to make sure something like that shouldn’t have happened.

    I’m anxious, and for so many different reasons than I usually am the night before surgery. And I hate it, because this was supposed to be simple. It’s not another high risk procedure to treat the Dercum’s, it’s just a stupid simple tonsillectomy. Why is it that everything having anything to do with me has to be so damn complicated? So damn messed up? So damn wrong?

    I had to go in to the Navy hospital in Bethesda today, just to get my blood drawn. Even getting my blood drawn is a major hassle now. I have to go into the Interventional Radiology department, where they usually perform complicated revolutionary life-saving procedures with amazing technology. But for me, they have to use all that technology just to access my veins. They put a mediport in my chest so that it wouldn’t have to be so complicated. I got another two-inch long scar on my chest so that things would be easier. But now the port (my second in only a year) keeps moving around, it keeps refusing to work, it keeps causing problems. Just like everything else. Now whenever I need a blood test done, I go all the way into Bethesda, and I have to waste poor Dr Georgia’s time. He’s beyond blood draws. He’s saving lives every day, he’s visited by world dignitaries on a regular basis because of all the amazing things he can do. And I have to bother him, take up his time, just to draw blood.

    But it’s not simple. Nothing ever is, is it? I had to be stuck over five times today, in the chest, with an x-ray running so they could see the port, because of course it wasn’t working as it should. And I was nervous and I asked too many questions and made it more complicated. Even still, after all of that, it still caused problems. We drew the blood, then had to wait 30 minutes to draw some more blood, and 30 minutes again after that. Sitting in that hallway in a hospital gown, feeling exposed and naked, feeling guilty for taking their time as they wheeled unconscious soldiers back and forth in front of me. I didn’t belong there. I shouldn’t have to be there.

    I’m tired of telling triage nurses my pain scale rating, and telling them that the pain is everywhere, then seeing their faces looking back at me as if I’m joking. And I’m not. I hate it.

    11 years. Eleven years. Eleven years gone, wasted away in hospitals, in pain, in medication, in worry. Half my life. How much more of it will it claim? How much longer until I finally have my life back? How much longer until God decides I’ve had enough of being trod upon?

    Don’t think I don’t know that things could be worse. Things could always be worse. I saw it again today in the faces of the soldiers being wheeled by in front of me. And I feel for them, I do. But things can also be bad enough for long enough that you just get tired. You start to lose hope. The light at the end of that tunnel seems farther and farther away, until it just looks like a star in a distant galaxy that’s flickering its way toward death. Everything piles up, keeps burying you deeper and deeper until you don’t remember what it was like without this weight on your shoulders. Sure, my disease could be definitely fatal, instead of this wishy-washy uncertain world of only “potentially fatal”, but in some ways I’d just rather know. Certainty at this point would be better than 11 years of pins and needles, back and forth, up and down. Yes or no. Being teased with a life for more than a decade, just to see it pulled away in more ways than one. It’s tiring, and I’m done with that game. I want to leave the playground now, I want to pick up my toys and go home.

    Surgery. Again. I’ve lost count. I’ll be in the hospital for a few days, at least over the weekend if not longer.