The lost post

I wrote a post and swear I hit Publish, but it disappeared. The gist was that the chiropractor said some weird things and saw some weird stuff, but overall I improved a bit after going to her. But since Monday I've been in the worst agony again.

The awful thing is that I'm feeling, and trying to be, so creative. I joined Creative Lenna's mini book swap, and also have a Meander Maze book (check Youtube for a Tim Holtz video on how to make a 16 page book out of one sheet of paper) due on my mini-books Yahoo group.

I have made a four-page Instant Book which is going to Lenna, and a toilet paper roll book with tags and a cover-holder which is going too. Then I think I'll make the wonderful book that Julia Jacques sent me, and finally one from Following the Paper Trail. This one is a half-page (6x12) mini with eight pages, all holding tags. I just need to wait for my Scor-Pal because I don't do folding and scoring at all well.

I do have to make one comment, which is that Graphic 45 paper is the bomb -- the new Basic Grey. If you have seen an ATC, card, or anything with a steampunk theme, there WILL be an element or two from their Steampunk Debutante line. And it is wonderful; all their papers are.

I have to give a shout-out to 29th Street Market papers too, for being heavier and double-sided with quieter designs. Sometimes that's what you want. I think Julia used that paper in her book for me. She blogged about it here: http://365atbds.blogspot.com/2011/04/my-wednesday-bring-your-own.html

It is so darling and so addictive, I think everyone on the Altered stArt Yahoo group is making one! The design is by Christie Callahan of Christie's Creations and the tutorial is at http://www.youtube.com/watch?v=I-AAaGQwDB0

This chiropractor...

So, Marla is taking me to a chiropractor, whom she assures me does no bone cracking or manipulation, just massage, on Thursday. Today she said some things that made me wonder, though. Like if I have a pelvic tilt, I may not be able to get certain muscles to fire (and not be able to lift a leg, for instance). She also did an awful lot of work around my neck and sacrum, which is where this woman thinks pain comes from. She also referred again to "not so enthusiastic about Western medicine" which is always a danger signal for me.

On the other hand, Western medicine hasn't done anything for me. So why not at least see this woman.

I talked to Andrew Hughey, and of course he denied that he ever said I could hurt myself further (lie) and said that he never intended to hurt me and had only good intentions. Well, that sure helps. He did have one good suggestion, which was to tell me that I might try the pool at Memorial Hospital with a prescription. They don't do deep-water exercise, as they did in the St. Paul YWCA, so I wouldn't have to worry about my bottom floating up and extending my back. On the other hand, aerobics isn't what I need. I don't know what I need, of course. Maybe they will have some idea.

I got my altered matchbox from Melody Strahan today, and it's so cute. A little artist, with a tiny tag reading "ART", and inside are his brushes and stencil pounce with paint on them. I love miniatures and am really enjoying this one. People who aren't like this don't understand what a thrill it is to get mail... which is why I try to make things. To get stuff back!

When I read the book Good Mail Day, the authors wrote that you can just Google "mail art" and find all kinds of options for trading it -- but there aren't any, and even their links weren't exactly on point. Some out of date and some wanting very, very specific items. I just want to make stuff and send it and get things back. I would like to have a whole body of mail art work, like Lenore Tawney, but of course that's not going to happen. I just wish I could feel good enough to do ANY work regularly.

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.