This Malapert Blood

Sunday, April 3, 2011

Speaking of this blog...

I like the background, which I got from The Background Fairy (click link in upper left) but why is the description above the tag, rather than inside it? I notice that some of her newer designs have the title placed such that the description would fall more into the proper area. But even using black and the Impact font, you still can't quite read the quote from which the title comes. It's "What, what? Nay, I must have..." The comma doesn't show after the Nay, and the whole thing is conspicuously outside of the tag. Which therefore looks silly just sitting there. Maybe I will change the whole thing.

So now that I've started, shall I blog? Should she paint, or write, or make her own underwear? Should I write about the centrality of my existence right now, which is pain? Unending, just about hopeless pain? I cannot convey to anyone how unbelievably awful it is to be in pain all the time, except perhaps when I lie a certain way for a while with ice or heat on my back. Then for a moment I think that it might be okay... and it never is.

What was really helpful was talking to Mary Anne yesterday. She broke her leg and dislocated her hip. She was bedridden for six months. Elizabeth had to bring her a bedpan. And then she started massage, and her massage therapist got her starting with baby steps ("Just ten steps today...) and now she's fine. A twinge or ache every now and then, but otherwise fine.

Can anyone imagine what it feels like to watch TV and constantly have at the back of your mind astonishment that these people are... JUST STANDING THERE? Walking around? Getting dressed, without pain. NOT IN PAIN!!! How awesome would that be? I can no longer imagine it.

And the horrible, horrible thing is that I was getting better last fall. I was pushing 80 lbs on the leg press. 20 minutes on the stationary bike. Calf raises, lifting weights, balancing on that ball or playing the game on the Wii where you have to navigate down the stream avoiding obstacles, or roll a ball into a hole (like that game which I could never do with my hands). Yes, it still hurt. I was still taking extra pain medication for therapy visits, and it still hurt all the time. But I could bear it. This is like when I was involuntarily confined in the psych hospital 3 months after I first broke my back and Chris and Andrew overreacted to my despairing statements about planning to kill myself when Chris went to work.

Of course, the only way out of a psych ward is to participate in the activities, go to meals, etc. I remember feeling then just as I do now -- sitting until I was shaking all over with pain. But then I could at least lie down on the bed and get relief. I could lie there for just five minutes and then be able to be upright for maybe 10 or 20.

But if something had broken again, wouldn't they see it on an x-ray? How could Andrew Hughey have destroyed my back during the therapy marathon in November? There was no instant pain, as when I broke my back. It has gotten worse incrementally -- the day after, I actually went back and did a few light exercises and the bike. I have been shopping for a Tempurpedic mattress. I sat at A&D's house when Daniela was almost due to give birth. Sat there with a pillow behind my back quite comfortable for an hour. I don't think I could do that now. But basically it's like it used to be, when I couldn't walk and needed a gurney to go to the doctor and back. Why is this LIKE that, but not showing up on any image?

Then they told me it had healed (another x-ray) and wow, it made all the difference. I sat, I walked, I climbed over a fence even (and fell out of a tree). I got lost walking Arbella in Concord and could be gone for half an hour.

Massage may help. Everyone keeps telling me that my pain centers are overwhelmed, and Mary Anne could hardly stand to be touched, and it helped her. That, and slowly increasing activity. Everyone says also that the more I lie in bed, the worse I will get. But that is what healed my back the first time, when it was broken. Everyone says it's not broken this time. So WHAT is it?

I can't believe that it's opiate-induced hyperalgesia. I mean, I probably do have OIH, even judging only from my testosterone level. But I don't for a minute believe that going off opiates is going to solve everything, like Kalra does. In fact, I am going to NEED those drugs to do ANY physical therapy for a while. I've got to convince him of that. Not lose it crying and sobbing, but explain that I do want to taper down, will taper down, but am going to need the meds for a bit longer than we thought, perhaps. We said three months. Maybe leave that open.

But anyway, this is my life. Thinking about pain, because the pain doesn't exactly leave me a choice. It's NOT something I can be distracted away from. Try telling someonee having a leg chopped off to watch a comedy. I did that last night, and was still, all along, marveling at the fact that there are human beings in this world who can live without pain. Who can do impossible things like stand for half an hour. Who can walk and run.

It must be hell for Chris -- but I wish he wouldn't get angry at me. I mean, ever. It's probably superhumanly rare that he shows it as little as he does, but why should he EVER be angry? Does he think I enjoy this? That I'm pampering myself? Why would you sound mean (which is all it is, but even that hurts) someone you supposedly love for something they can't help. Maybe it's unrealistic, but I don't think so. I could justify, in my own mind, asking for a lot more help. But I suppose it's going above and beyond for a man to be as forgiving (? Odd choice of word there), or maybe tolerant... no... as supportive as he is. I mean, he does do everything. But I wish I could too! It's not as if I use this to get out of things I don't like!

Things to ask Kalra about on Friday: TENS unit... Nerve ablation... Testing the SCS unit... Pain pump (Priote plus opiate)...

Find out about pain psychiatrist/ologist from Pang.

See or talk to Eichbaum, explain the attitude at UCSF, and ask him if he will be able to get me back there when I'm better (assuming that ever happens).

Excoriate Hughey.

Keep thinking about Mary Anne. She was in nearly the same position and came back.

TRY to spend a minute a day not thinking about the pain. I could do that in fall, although even then I was often being astonished at how much better the pain was. I was still thinking about it, just being amazed at how I felt being able to tolerate it. It WAS still there; I remember once talking to Hughey, sitting on a table, and I put my hands down to sort of lift my weight up and off my spine. He knocked my hand away and I remember saying that the pain was still there, but tolerable.

So I can get back there. Can't I? Yes, unless there's still something no one can see. It sure feels that way -- unstable and wretchedly, bone-on-bone painful. But if it were anything "real" it wouuld show up. Right? Right? I've got to believe that.

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