How Chronic Pain Killed My Husband — Pain News Network

https://www.painnewsnetwork.org/stories/2017/9/4/how-chronic-pain-killed-my-husband

My Body Talks Too Loud

This afternoon I had to get out and see someplace that wasn’t the inside of the van I live in.

It’s been in the 40’s and 50’s here in Northern Arizona.  Very beautiful, too, when not spitting “wintry mix.”  Still not terribly comfortable for those of us with loud bodies.

To be truthful, I’m sick and tired of this body.  I’m grateful for what it’s done for me, carrying me around my life, into and out of some truly wonderful and outrageous and sometimes horrifying adventures.  I love that it carried me on horseback all over the place, allowed me to throw it down mountains on skiis, glided me through water salt and sweet.  It grew me a baby 32 years ago, and then fed and nurtured that baby, who is now his own human being with his own life.

I feel as if I’m saying goodbye to that nice body, the one that danced and played music night after night after night after dizzy exhausting night.

That body is, for all intents and purposes, gone.  That body, the one that I knew I had because it felt so fucking amazing lifting weights, powering up mountains, inching along rock ledges, is changed for one I can’t ignore, for entirely different reasons.

This new body tingles and buzzes.  Sometimes it bangs on pots and pans, other times it feels like zippers zipping up and down my arms.  Reaching for an object gets me electric shocks.  


My previous body had pain. Lots of pain, most of the time, in fact.  But as long as it still worked, carried me around, worked its way into the asanas I loved, I put up with the pain. As long as there was that confidence that if I kept on putting one foot in front of the other, I’d reach my goal, no matter how distant–the pain served as evidence of my progress.

There have been times when the pain put a stop to my activity.  I’ve had stretches of months at a time when simply getting out of bed took half a day’s energy, and getting back in took the other half.  This is discouraging.  But I’ve always pulled out of those nosedives, got back in the saddle and rode away.

Not this time.  

The bones in my neck are getting worn down because of ligamentous laxity.  I love that term, don’t you?  Say it a few times.  It’s fun!

Actually it’s not fun.  When your ligaments get over-stretched and no longer hold your bones in place, the bones slip around and rub against each other.  The cartilage wears off.  Bones grate against bones.

It’s not quite so awful if it’s one or two bones that are loose, but if you have a whole spine full of them, you have a problem.  I have that problem.

It’s not just my cartilage that is crumbling, either.  My muscles seem to have jumped into the act.  I’m nursing multiple rotator cuff tears, in both shoulders.  I have tendons that are shredding.  Ligaments, too, are becoming frayed.

We know this because of MRI information.  We also know this because my recent hand surgery revealed tissue damage that has been going on for decades, a representation in my wrist of the destruction in my whole body.

Of course now the nerves have come on board.  They buzz, they vibrate, they pinch, they stab.  They ache.

Something in my neck has changed for the worse, so I made an appointment with a local spine surgeon who I’ve seen in the past.  Unfortunately for me, he retired at the end of the year, so I saw his successor: a nice young man, full of algorithms and theory but not much experience.

“When did this start?”  His opener.

“In 1983.”  I felt myself slip away into dissociation.  

“Oh, but this time.  Did it start yesterday?”

Patience, Laura.  It’s not his fault he doesn’t know you.

“I have a genetic defect of collagen structure.”  I gave him a quick rundown of my history of spontaneous dislocations, spinal badness, surgery, injections, etc.  His eyes glazed over.

Fortunately, I collect CDs of all my MRIs, and they were on his computer already.  We aborted the attempt at oral history and just looked at the pictures.

Oh look, he says, you have at least three unstable levels in your neck.

Yes, I nodded (not much of a nod, because I can’t look up because my neck is stuck that way).  And something has very much changed, and that’s why I’m here.

And luckily, when the nitwits at the Cleveland Clinic did the Whole Nervous System 3 hour long MRI looking for MS, they used contrast, which showed the benign tumors that are inhabiting my vertebrae.

Did the New Guy think that hemangiomas (benign tumors made of blood vessels) would be a problem for surgery?

Certainly, he said.  But if you have a collagen problem, that alone might contraindicate surgery.

Yeah, I kind of thought so, I mumbled.

There must have been something on the floor, because we both stared at it for an awkward interval.

Well…he fidgeted with his cuticle…I guess the first thing is to get a new MRI.  Make an appointment to review it with me.

The MRI is in a couple of days.  Then I’ll get the news: something I can live with till the next thing?  Something that’s going to cause further damage unless fixed?

Right.  I’ve already had that opinion.  In fact, I’ve had three separate opinions, from three separate spine centers, that all say the same thing: no surgery, not much life left.

I’m feeling like a box of cereal that’s past its expiration date.  Stale.  Crumbling.

And sooner than later, full of worms.

How Do I Advocate for Chronic Pain? – National Pain Report

Is the current “Opium War” hurting you or someone you know?  Here are some good tips for how to get involved.  Don’t let them kill us with “kindness!”

http://nationalpainreport.com/how-do-i-advocate-for-chronic-pain-8831046.html