y mind is willing, but my body is a complete mess. This has been the opening statement you'd hear if you were any of the many medical professionals I've met lately.

Those of you who have been following my continuing adventure of the last year already know I'm a mess, but since I promised to use this space to update my friends and family on my condition as soon as I was able, here's the list...feel free to skip this entry altogether if you'd rather not know (or really don't care) what I'm dealing with these days...

I have...

Degenerative Disc Disease in my spine, which is causing the discs between my vertebrae to dissolve as time goes by. The result of this is that I am now three inches shorter than I was when I moved to California in 1990, and the cushion between my vertebral bones is no longer providing enough space for the nerves to sit comfortably. The result is that I experience constant chronic pain burning through the nerve fibers of all of my arms, legs and spine all the time. Taking pain medication helps take some of the edge off, but it also makes me stupid. I have a hard time concentrating and the constant buildup of toxins from the opiates creates an incredible depression that would probably crush a person less optimistic than me.

I had a cervical fusion of the C5-6 vertebra two years ago where doctors completely removed the disc and fused the two bones together. This results in a strong fusion at the site, but the discs above and below that fusion are now herniated, so they press against the spinal cord. Not enough to warrant another surgery, but enough to create unending pain signals.

I have something called Diffuse Axonal Degeneration, meaning that the axon fibers in my nerves are dying. There doesn't seem to be a reason for this that the doctors can find, but the result is that I am losing sensation in my peripherals, and losing motor control over my muscles. While this is often the result of diabetes (which of course I also have), the experts at the Diabetes Care Clinic in Salinas, CA have said that they have never experienced a symptom like mine in the thousands of patients they have seen in the last thirty years. So, my nervous system systematically shuts itself down, and no one can offer me any reason for it, or any hope for a cure.

The worst batch of symptoms we've been battling is Paroxsysmal Dystonia. What started out as a tremor and a twitch a year ago has now become a three (or more) times daily spasm that causes all my muscles to suddenly lock up tighter than you can make a fist. For the next 5 to 30 minutes, I write in pain on the bed (or the floor if I wasn't lucky enough to make it to the bed) while my body appears to be in the throes of an epileptic seizure. Once the muscles have become sufficiently fatigued, the spasm stops and I then spend twenty or thirty minutes with myoclonic jerking...more uncontrollable movement.

I have seen the greatest minds in the world of neurology and spine care, and all of them agree that something bad is happening to me, but none of them have ever seen symptoms like mine, so they don't know what to suggest for care. Since I can appear to be just fine one second, and completely out of control the next, it is almost impossible to put a name to it. At the Stanford movement disorder clinic, the neurological team agreed that the best they could do would be to track the progress of my symptoms over the course of the next 6 months or a year to see if I start to level off. They say that things that they are unable to diagnose often will resolve themselves spontaneously, so I should try to keep my spirits up and hope for small gains.

Once I finished with them, I was escorted across town to the sleep disorder clinic where I had an overnight study done. Today I became the proud owner of a CPAP machine which will help me fight sleep apnea and keep me breathing during the times I am able to wrestle myself to sleep.

All in all, not a pretty picture.

Not to despair though, dear friends and supporters. I refuse to give up, and I continue to find ways to get small victories every day. Rather than being able to spend time working or making soap, I spend my few keyboard moments responding to email messages from friends and family. Rather than being able to exercise, I get a thrill from walking to the mailbox. Not a great quality of life compared to what it once was, but I still thank my lucky stars every day for the joy of being alive.

Hey, at least Carol is here for me! That alone makes me better off than anyone else alive, so the rest is just gravy anyway, right? Right!

Love you. More soon. Too tired to type any longer today. Gotta go thrash around on the bed a while.....

-=b=-