Saturday, June 25, 2011


The last little greasy drop of Ketamine hit my pickled brain at about noon on Thursday.

The doctor jacked up the dosage on the last three infusions, which was a surprise.  They were challenging.  In the middle of each one, I lost my way:  I did not know who I was, exactly, or where, and definitely was clueless as to the "why" of things.

Every stray thought promises profundity, begs to be preserved for sober discussions.  Within five minutes of shutting off the drug, that self-importance also drains away. 

No one really cares that the ceiling tiles turned into roses or that pain should be compacted and balled up like so much tin foil, then stuffed in a can.  Apparently, I pretty much did a power point presentation of my Pain Ball theorem.  Somewhere in there, I decided that "I don't matter," which was not such a bad thing to learn.

I learned that Ketamine causes Nanci Griffith to sound like The Chipmunks on nitrous oxide, but that Mary Black was well suited to it, even enhanced.  Nina Simone ruled.

Although changes can still occur post-infusion, it's clear that Ketamine, even given under the Schwartzman protocol, doesn't help me.  Plus, I've come away with a symptom that has been greatly aggravated by the treatments -- awful and distressing spasticity in my left leg, primarily.  When in full force, I scream as my foot bends upward, causing unseen red hot stressors all the way to my hamstring.

The "up" side is equally simple:  I have psychological relief for having tried, for having risked it, no matter the outcome;  I also have learned a few things about communication.

I cannot help but wonder how different my life would have turned out had Ketamine infusions been available within the first few months of CRPS onset.  I've encountered people for whom Ketamine was the first treatment -- not an oddity, not weird, not excessive.

It will take me a few days to regain that razor's edge incisiveness for which I am so well known. 

July 5, I am supposed to go back for some grand summation.  Rather, that's when I'm expected to beg for Prialt.  I can't face that right now.

Thanks for your kind thoughts and good wishes. 

I've written and deleted several paragraphs about Fred and what a blessing he is... who else could crack jokes during Ketamine hallucinations, who else could shine through the darkness? 

Ceiling tiles swirled and became roses, monochrome, white, flat, and thick black lines.  Various bands crowded together, skinny-legged and tight-panted, plugged and unplugged.  A black-haired Madonna whimpered in pain behind the curtain on my right, though "right" and "left," never my strong suits, were meaningless.

Like an anchor, immutable but still surprising, Fred guarded my feet, told me how much longer I had to go, made logic of the illogic, evened the rocky keel.

Sunday, June 19, 2011


Bianca Castafiore is keeping her heft at a fair distance from me, a fair distance being enough of a head start to make it to her appartements in red stilettos, and without losing her Philip Treacy sculptural hat. La Bonne et Belle Bianca, always over-the-top in her ways, has attained that rarefied place known as Wretched Excess. Arrogant Opulence. Human Iconography.  She's the Imelda Marcos of Tête de Hergé -- at least in the millinery arts. The Parable of Mrs. Marcos and her 5,400 shoes is not one of my occasionally flighty references. Our Milanese Nightingale risks becoming the cartoonish  punch line of a joke.  Not that the Marcos' various rapes of the Filipino people had any humor in it...

A hat from Ms. Pearl's collection
An award-winning photo byArtist: Jan Siemucha
Anyway, back to the structured fabrics 'n stuff on Bianca's head.  Perhaps you can appreciate the feathers and flowers, the toxic shades best reserved for traffic signage, and the endless allusions to Seuss, but most of The Manor Denizens (and Mavens, don't forget the Mavens) are simply puzzled by all that fashionable electricity.  The cost of each piece is not demurely left to quiet speculation, as The Castafiore pulls a Minnie Pearl, attaching a legible price tag to her various brims. 

[Would that our friend had the insight of "the belle of Grinder's Switch":

Minnie once said that "The price tag on my hat seems to be symbolic of all human frailty. There's old Minnie standing on stage in her best dress, telling everybody how proud she is to be there, and she's forgotten to take the $1.98 price tag off her hat."]

But why does The Diva flee from me, however stylishly she does it?

The look in my eye?  My capacity for violence?  My jealousy of the artwork perched upon her head, the shoes on her feet?  No.

Well, maybe the shoes.  I loved shoes, back in the time when I could wear shoes.

Mostly, she is running because I add nothing to Marlinspike Hall's ambiance these days but screams.  I did not know myself capable of such screaming.  It is not intentional.  It is a product of pain.  And no one wants to be trapped with me inside despair.  Running to the privacy of her now-medieval, now-renaissance styled suite of rooms is the most logical of Castafiorean reactions, even if the shoes and hat slow her down.

I have been off of opiates since June 3.  Others have questioned the purpose of that and from the vantage point of *now*, clearly I lost my mind.  The 9.5 out of 10 pain that I am experiencing is not the dregs of withdrawal, as I've tried to fool myself into thinking.  This is the amount of pain I am in without the assistance of opiate medication.  I will not even try to describe it.  That I've done little beyond scream over the past week will have to satisfy your curiosity.  Years ago, when introduced to the stupid pain score of one-to-ten, "ten being the worst pain you've ever had," I decided to never give "ten" as a response, knowing that more pain was at least a possibility. 

Short of being dissected alive, I cannot imagine hurting more than this.

I saw my Go-To-Guy MDVIP doctor on the Friday before the first of this Ketamine infusion series -- designed to approximate the Schwartzman protocol -- and he surprised me by supporting the use of Prialt, "if this doesn't work out." I was adamant about not even entertaining the notion until the Ketamine treatment clearly failed to relieve my pain in a meaningful way. 

The last three infusions begin tomorrow and end Thursday. 

Yes, I am even screaming in the infusion center, vaguely aware that people keep coming to my bedside, trying to help, whispering questions I cannot decipher, just as I cannot figure their faces.

The seizure activity in my legs is now accompanied by spasms in my arms.  It's cruel and unusual punishment that I'd been comfortable attributing to opiate withdrawal, but now know as my latest CRPS symptom.  It's not going away.

My kidney function took a hit from all the ibuprofen I've been living on but will surely correct itself. 

Last Thursday, there were only two of us patients awaiting the miracle of Ketamine.  It was kind of eerie.  The other patient was right next to me.  I never saw her face but we all witnessed the terror of her dementia, which centered on the notion that her sister planned to leave her there and go home without her.  Her sister was kind and patient... until she began using me to manipulate her sibling's behavior.  "Shhh, now, sister.  You are disturbing the nice lady next to you... She needs quiet..."

Which was, of course, my cue to start screaming the inchoate mess of my own terrors. 

The night after the first infusion of this series, done at a much higher dose than I'd ever had, was pure Hell.  I hadn't slept in a long, long time.  Fred was in bed, and I wanted to do something -- no idea now what that was -- and ended up in a nightmare of ramming my wheelchair into walls at full speed, seriously injuring the toes on my right foot, and smashing the heck out of my knees.  I was having black-outs.  To jerk back into consciousness was to see the wall, the door, the ramps, all flying at me and having no time to brace for impact. 

So you see why my friends and family flee when they see or hear me coming?

I know it's hard for you to believe but I generally undersell the extent of my pain. In just a few months time, though, it's become the center of my life.  I watch Bianca teeter-totter on her amazing heels, running with one hand clamped on her behatted head, crowing with operatic glee when she reaches her sanctuary.  Fred finds numerous errands to run -- even in the middle of my treatments, he has begun driving around the area of the hospital, showing up again in time for the dregs of Ketamine to run in. 

I cannot see surviving this.  I cannot see allowing an implant for Prialt.  I cannot see farther than this coming Thursday, when I will be able to say that I TRIED.