Sunday, September 15, 2013

CRPS Ignorance Pisses Me Off

ADDENDUM:  Okay, so I wrote this first thing upon getting up (so to speak...).  My "first thing," like many folks' "first thing," includes a perusal of both mainline news and any special interests that those cute little nano-search bots have unearthed while I listened to music and prayed for sleep.  My special interests include CRPS research and news.  Unfortunately, the bots can't distinguish very well between a human interest story and more helpful journalism.  So I end up with lots of "suicide disease" stories and quotes about having lit kerosene flowing through CRPS sufferers' veins.  I don't react well.  So this post serves as the umpteenth example of why I am no one's Life Coach, why I am not famous for shepherding people from right where their sweet souls happen to be to where I, as the Almighty, know that their sinful selves ought to reside.  

All of which means:  I am sorry for this woman/girl.  I am pissed at the mismanagement of her disease.  I regret seeing evidence of yet another person becoming the vortex of suffering for an entire family and community.  

I hope for change.

And in spite of the two nasty emails I've already received, I wish her well, and restate the title of this barnburner of a blog post:  CRPS ignorance really, really pisses me off.

ADDENDUM AGAIN... or, I suppose, we will be shortly moving into ADDENDA!  While barely resisting the urge to pack *myself* in ice tonight, I checked out the young lady's website, available by link in the article that is the object of my ire.  It is good to know, and I want my readers to know, that she's hooked up with Dr. Joshua Prager's comprehensive program at UCLA --  California Pain Medicine Centers Center for Rehabilitation of Pain Syndromes.  So now if we could get the "yellow" journalism to stop, and yes, some more education for the family, and yes, some money in their pockets... she is truly on her way, she is facing her best shot at learning to live with, and not be defeated by, CRPS.


Here's an article I just ran across, meant to tug at your heartstrings, but mostly meant to cause you to turn over the sofa cushions in a search for spare change to donate.

Actually, I'm not going to reproduce the article.  Click HERE for the link.

When is this stupidity over CRPS going to STOP?

Here is this woman, purposely immobile (CONTRAINDICATED), covered in ice (CONTRAINDICATED), completely divorced from life (DEFINITELY CONTRAINDICATED), and, at least in this article, going from zero to sixty in what I interpret as an effort to raise money for ketamine treatment.

Interestingly enough, I am coming to the defense of the medical establishment.  The last ten years has seen an enormously successful educational effort among doctors, at least within the appropriate specialties -- neurology, pain management, orthopedics, emergency medicine.

Ketamine is now usually covered by insurance -- and I don't think they are trying for the overseas ketamine "coma" therapy, because the cost they cite is then more than a little on the LOW side.  I assume they are opting for subanesthetic ketamine infusions.

I'm all for that.  I decimated my savings on that crap shoot, because it was worth the risk.  I had help paying for it from the ACA's PCIP program, so if you like, you can blame the US of American current financial woes due to rampant health care expenditures squarely on moi.  However, odds are that if I'd had access to ketamine therapy early on in my disease, I'd be dancing jigs right now.  So, again, I'm all for this young woman giving it a go.

After they've verified her diagnosis.  With an expert or specialist.  After they've discontinued working WITH the disease and begun fighting it -- with proper meds, proper behavior modification -- just with some freaking properness.  If you get my drift.  A few sessions with a pain counselor are in order.

If ever there were a tabloid picture screaming "aberrant illness behavior" this photo is it:

And, speaking of odds, again, odds are, that with her general mindset unadjusted, and her knowledge of how to handle CRPS remaining stagnant, ketamine may help for a while... but she's at optimum risk for relapse.

Give yourself the best of chances.  Do your due diligence.  Take off every possible splint, restraint, immobilizer. Melt the ice.  Let the light in.  Do stuff, stuff you like, small things, even if it hurts.  Correct your language... there is no acid or kerosene flowing in your blood vessels.  On the pain scale, your highest score possible is TEN, not ten thousand.  Rejoin the living.  Avoid catastrophic thinking.  Do as I say...

... not as I do.

Good luck.

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