Wednesday, January 8, 2014


Oh my... well, let's see...

Nothing makes me feel better. 


Spasticity and pain have sometimes been 86'ed by the correct herbs, but if they're not correct for today, or correct for what's wrong today, they don't do much, if anything at all.

Oh, what else?

I can't pee without catheterizing myself. If I've tried "too soon" after the last time, I can't even get the catheter in all the way, much less "through the prosgate" as I call it (the prostate sphincter at the bladder).

I can't poo without pu erh tea (no connection, as far as I know) to get things underway, if it works at all. Which it hasn't today.

I can't walk. I can barely wall-walk.

Other things that I'd love to use to pleasure my wife, I can't. The system doesn't work. At all.

I'm in pain, either most or all of the time.

I'm cold, either most or all of the time. So cold that I shiver so much that it makes catheterizing difficult. 

I try to stand up to brush my teeth, if for no other reason, than to practice standing up at the sink while I'm brushing. Which I can do... sometimes. I'm gonna head for that, when I'm done here.

I can't play the organ or piano any more. You need your feet, you see, both instruments have pedals for different purposes. I have sat on an organ bench just to poke at it or to make use of the "auto pedal" feature so I can have a pedal register available via the manuals. Designed with pianists in mind, I think. Anyway, I nearly fall off the bench every time I sit on one, unless it has a back, which lots of organs don't.

I have a connection who has a connection to someone who would let me poke at the organ in Disney Hall. A real mufu organ, from what I know of it and the builder. I don't think I can get at the console, I may fall off the bench, and I can't play the pedals, at all, even to stand on one note (required for the opening moments of the Toccata in D Minor, one of Bach's most famous organ pieces, which in the past I've played for screaming four-thousand-person audiences. But even to try it out, I probably can't.

Often, I can't bear to eat. If I try, I can't eat much. My wife and I are hoping to have lunch with some friends later this week, and I don't know if I'll have enough energy to actually enjoy it. 

Oh yeah, I forgot. Just sitting in my wheelchair, in any chair, is often quite uncomfortable. I have no idea why. Or, more importantly, how to make it stop hurting (see above, "constantly in pain"). Which especially sucks because if I want to write music, I need to sit in a chair so I can use the typewriter keyboard and the piano-style keyboard, one with each hand, for data entry. And oh yeah, I need to have the energy to actually do the music writing.

Which nowadays, I generally don't have.

I've tried a medical-herb combo that one doctor says "don't do that one" and another one says "do more of that one." Right, specialists with diametrically opposing suggestions.... just what I need, especially within the context of "constantly in pain" which I also don't need.

Yes, gentle readers, those of you who have been with me a while know I can often find the spiritually-uplifting truths hiding in the challenges of the MS Highway, to find the true gifts of MS.

I'll take them any time. But between you and me, dear friends, I don't regard elimination problems and constant pain as a gift.

Damn it, there is a gift hiding in here somewhere...

Boy, I am SO ready to discover it. If not to full-on enjoy it. 

It's definitely high time for that!


Judy at Peace Be With You said...

The only gift I can offer you is my compassion. And a virtual hug. ((((Robert)))

Robert Parker said...

And wonderful gifts both are, indeed! Big hugs back at you!