Tuesday, November 8, 2011

1,000 Cuts

Sorry for the cryptic post last time.  As my long-time readers know, I have a particularly nasty form of something called peripheral neuropathy.  Something is causing the myelin sheaths of my sensory nerves to deteriorate, similar to the way the motor nerves degenerate in ALS.  So far, for the most part, only my sensory nerves are affected.  As they provide less and less information to my brain, it makes up for the absence by manufacturing its own information.  This usually takes the form of cold, but is very variable.  There are days of intense heat, pure pain (for lack of a better description), the feeling that you get when you stand barefoot on gravel (only all over my arms and legs), crawling bugs, electricity, and lately something new:  I feel like I am standing in a wind of tiny pieces of broken glass.  Like the proverbial death of a thousand cuts, only without the death.

I have had a tremendously difficult time coping with this latest.  I used to think the obstructive pain of an attack of Crohn's Disease was the greatest pain I could imagine.  Then I got shingles.  I thought that was the worst thing my body could throw at me.  Then this started.

I don't really have much of an opportunity to vent in other ways, gang, so you're stuck with me writing this.  I did not know I could tolerate this level of pain, for this long.  My doctors are at a loss for much help, even the brilliant docs at the ALS clinic at the Penn State Hershey Medical Center.  (And they really are brilliant.  Bless them all, Universe; bless them all each and every day.)  Distraction is the best course of action during the day.  If I can fill my mind with other things, I can actually almost forget about the pain as it becomes part of the background noise of my body.  Nights are bad.  When you're lying alone in the dark, and the only distractions are the sounds of my wife and dog breathing quietly, it can be quite debilitating.  I take pain medication, but it's starting to bump my blood pressure up to unpleasantly high levels, so that "out" may not be a consideration for too much longer.

I wish I could give you some answers.  I wish I had something to share that would give a smile or wipe a tear for all the others who suffer similar afflictions.  I don't.  There are no answers for me, not yet, at least. My rheumatologist is ever optimistic and is always sharing his hopes for the Next Big Thing that's in the pipeline that might help with autoimmune nerve degeneration, and I appreciate that from him.  He also feels that I am not enough of an addictive personality and so can be trusted with painkillers.  I can't wait to hear what he offers next now that this door may be closing.

All I can do is carry on.  It's precious little.  It's hard not to feel sorry for myself, hard not to want it to be over, hard not to resent the simplest things like walking the dog when walking means feeling like walking on razor blades instead of concrete.  But so far any other, more extreme alternative is out of the question.  If there should come a time when my motor nerves are also affected by the same degeneration, that question may have to be revisited.  But for now, I'll burn that bridge when I come to it.

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