I meant to try and blog the details of Thursday's momentous visit to the famed clinic at the renowned institute... but I had my well-known reaction of collapsing afterward. Indeed, Fred and I were still good for nothing yesterday, and it is early in this day yet. He's gotten up and gone back to bed several times already.
We were invested body and soul in that visit.
Wednesday night, having trouble relaxing, finding sleep impossible, I went on the prowl for an old online friend from four or five years ago. Matt has CRPS and is a brainiac, as he understands the intricacies of neurochemistry, pharmacology, physiology and all that schtuff -- plus he has that admirable attribute of being a calm fellow.
Calm, but even so, obsessive. To his attractive equanimity, I was a pressure-valve release. He could laugh as I intuited my way through hard science and discussed politics and cats in the same breath as dystonia and neurogenic skin ulcers.
I went off into my own obsession as the infection in my bones insisted on Star Status, Center Stage, requiring that I be RingMaster of that Three Ring Circus. Plus, my Hawaiian-shirted neurologist continued to harp on the necessity of not getting involved with online CRPS "communities." He worries that people in so much pain will simply suck the life and hope out of each other... I've seen that happen, and worse. I cringe when a "RSDer" decides to reveal all to some poor newcomer to the disease, coloring what might be opportunities as wastes of time and introducing the concept of "The Monster." One day, I'll try to put together something cogent about "CRPS, The Monster."
Although he wears sandals in December, my neurologist is right. What sense does it make, when pain and disability are busy limiting the scope of your life, to align yourself with people in the same plight, or worse? It's like desiring to see farther and clearer by adding a filter of smeared vaseline to your lenses...
Odd that an optical analogy presents itself to my mind.
I was truly suffering with my eyes, also, on Wednesday night. The new drops, Combigan, are kicking my booty. Who knew (apparently, lots of people, just not
moi) that eyedrops could wreck a person so? Within minutes of using them, my energy level drops from Pathetic to Abysmal, and I want nothing more than to assume the fetal position for a few hours, in between spurts of horizontal vertigo that have me attempting to latch on to air.
Of course, coloring all that wordy perception is the simple complication of hypoglycemia. My relationship with blood sugar is perplexing, and is the only thing that I totally rely on my doctor to decipher -- because it stopped making sense to me years ago. I don't technically have diabetes, but I have diabetes. As in, my blood sugars are high due to corticosteroids, and then pushed higher by infection. Not even insulin will bring it down some days -- prednisone and pus-y bones can do that. However, when I take a round of antibiotics that knock the infection/inflammation back a bit, I have to remember to also cut back on the long-acting insulin formulation that I take twice a day -- or I might drift off in a deadly haze of plummeting blood sugars.
And drift off I have, several times now. Thanks to violent shivering, I do manage to claw my way back to consciousness, and -- eventually -- to the realization that I need glucose, NOW. An additional personal oddity? In this state, I usually launch into some complicated preparation that will require a good hour of studious cooking before a single bite is at hand. Yes, I will walk by a ready stash of hard candy, ignore the thirsty, stylized come-ons of the orange juice in the fridge, and proceed to whip up a batch of, say, onion bahji -- the traditional hypoglycemic rescue food.
All of which to say that I was a bleeping mess come Thursday -- thoroughly dispirited, hypoglycemic, eyes inflamed and, honestly, pretty dim, too. (I don't know how, exactly, but a blood pressure that rang in at a robust 200/110 probably contributed to my feeling a tad strange.)
Despite having spent a good portion of the past three years hanging out in waiting rooms and infusion centers overlooking the same street we were seeking, we got lost. Fred needed to curse and bang the wheel, so that brief foray into uncharted territory was good for him. Not so much for me, perhaps, although we had no clue at that moment that my various inner pressures nearing meltdown numbers... be they high, be they low!
It turns out that my cocky conclusion of having been to this clinic before was wrong. That is a good "wrong," for a change. My experience at the prior joint, back in 2004, while not horrendous, was not something I was anxious to repeat.
The famed clinic is actually located on the esteemed ground floor of the world-renowned hospital, whose purpose is specializing in "medical treatment, research and rehabilitation for people with spinal cord injury or brain injury." As you enter the main building, you pass a statue, bronze, I think. It's of a young man in a wheelchair, testing the heft of a javelin that he holds in his right hand, while his left steadies the rim of a wheel.
That sculpture bothered me. While trying to find a picture of it to share here, I encountered others who seemed to share my discomfiture. One person, trying really hard to name the problem, posited that there was too much of a disconnect in a modern athlete as occupant of a clearly modern and sleek chair -- for the rendition to be in bronze. I give that critic an "A" for effort!
The problem with the damn thing is having to face it straight away, first thing, on your first entry to the joint, on your first day, you know?
Me, I have issues with the whole "exceptional people" commandment that drives many attitudes about disabled people, sick people, "disadvantaged" people, whatever the hell... And when I confess that, I can read the internal memos as they're being written up and posted.
Notice: This woman is a lazy ingrate.
Imagine, though, that you come here knowing nothing, unprepared. Do you think: "Wow! Though paraplegic, I can still become a worldclass track and field athelete! Cool wheels!" Or do you think: "What the fuck doe this have to do with me? And who dressed that gimp?"
Representation is fraught with issues, is all I'm saying.
So we are directed to take a right, then a left. As we turn into the waiting area for the Pain Clinic, we pass their Multiple Sclerosis Clinic. There's a clinic for everything -- Seating and Wheelchair Clinic, Brain Injury Rehab, Spinal Injury Rehab, Swallowing Disorders Clinic, Urology Services.
Most everyone, except the outpatients, sports a smile and oozes that kind of kindness peculiar to hardwon equanimity. The inpatients are almost cocky in their competence, popping wheelies and doing handstands, breaking into song and dance with the slightest provocation. We outpatients, though, we know we have to go back out there, out past the Javelin Dude, beyond all that cozy exceptionalism back into "Meh"-Land.
I have it so easy.
There was a harried woman ahead of me in the line to sign in -- she sported that well-known short haircut of the busy woman. Once upon a time a stylish bob, now stringy and tired, the tips of her blunt cut swing down to cover her cheeks as she corrects an address and provides a new identification number for her son's insurance. He is tall and rangy, a stick figure painstakingly shackled to the full frame of his high tech chair, controlled by breaths puffed into a straw. The angle of his head to his neck, and all that to the line of his shoulders make him look like an incomplete assembly. Like maybe there are some pieces missing that are stashed in his backpack. But no one stopped to reattach his head to his neck or to correct the impossible angle of his left knee, wrongly twisting away from the descending bones of his lower leg. And why do these creatures always seem to be staring at the ceiling, and drooling?
They called his name before his Mom was done fixing all the forms, which had the effect of making her spill the contents of her fanny-pack, her hands shaking, as she tried to make off with the Sign In pen, to the consternation of the Sign In Nazi. Her son blew a righteous puff and sped past her to the waiting nurse and the inner sanctum of The Clinic, Mom eventually bobbing and weaving in his wake.
I thought of all that went into just getting there. Of how carefully she had organized her fanny-pack, of how painstakingly she had cleaned him, changed him, shaved and dressed him, done his respiratory toilet, all the while murmuring lists, questions, and magic words for the doctors who would breeze in, breeze out. I thought of how tired she must be. I did not dare think of him in terms of words, at all. When I tried, I got a great big noisy nothing.
They wanted urine so they could do a toxicology screen but I was not able to pee enough. I had purposely not taken any Lasix that morning, not wanting to have to go to the bathroom while we were out! Despite my good faith offering, the nurse gave me a calculating glare. I told her I'd try again when I was leaving... but I forgot. I don't think it will matter as I was not there trying to score a script -- No, I was there trying to score some Special K, and intravenously, too!
I lie -- the nurses were all wonderful, and very kind. They make the visit as easy as is possible, even those aspects involving paperwork and insurance contact. Never have I experienced such confident, blithe assertions that there would be "no problems with the insurance, just leave it to us!" My jaw kept hitting the floor...
Asked whether I needed help putting on a gown, I allowed as to how that wouldn't be necessary because I wouldn't be disrobing.
Not even a flicker of annoyance on their part! They knew then that my vital signs were not cooperating and that my smile involved not just ill-suppressed joy but also gritted teeth. Plus, the purplish-black legs were a dead giveaway.
Suddenly afraid that by refusing the gown I would be labelled, I offered to do it if the doctor really insisted... but in lieu of his insistence, I got the doctor himself, not bothered and going straight to work. My records had been faxed, my Go-To Guy had authored a personal plea, and I made sure to reach for his hand and establish a firm character. Unfortunately, I also yelled "ow!"
It only took about 20 minutes for him to size me up, even less for me to figure him out. There were two nurses present, one his assistant, the other from the infusion center where the ketamine is meted out. As usual, worries centered on the unresolved bone/joint infections and my overall crappiness. I felt my hope dying and tried to fix a polite expression on my face and think of nothing much...
Then he was saying, "Let's give it a shot."
Blink. Blink. Blink?
Excuse me. Excuse me?
"The only thing is... you have to be realistic." So he did his Five Minutes On Realistic... and I sat there grinning like a fool.
I missed almost everything he said and had to ask the nurses to stay when he left and fill me in! They were extraordinary, offering tips for my first experience with subanesthetic ketamine. Normally, the doctor "consents" patients in the clinic before they come for the infusions. He had refused to do that with me, requiring that an i.v. catheter be successfully placed before he'd go through that process. In fact, most of his concern seemed to be about i.v. access, to the extent that he insisted I get a permanent port if I decided to continue after the first infusion. ("If"!) He would go into more detail about dose and scheduling options if I actually have some pain relief from the first infusion. ("If"!)
You see, I have not entertained even a moment's doubt that this was going to work.
That's right -- I can write about geeks and disabled people missing parts, demeaning
this, demeaning
that, but don't get between me and a chance.
In my opinion, this is the very first chance I've had to beat CRPS. The first in almost 10 years of incessant pain and ever-increasing disability. Ten years of profound depression, loss of career and colleagues, the amazing and magical disappearance of both family and friends, the suffocation of any and all vestiges of intimacy... well, you get the Pathetic Picture. If you don't get it, I refer you to almost any week's worth of posts in this blog.
There followed some nit-picky detail work, including a trip to the pharmacy and some scouting of the area to smooth out the wrinkles of our next visit.
I was giddy with happiness; Fred was shocked, taken aback. He did not think they would admit me to the program. Not to worry, though, I wore him down with the persistence of my joy!
Back in the day -- you know, code for
when I used illegal drugs but still managed to excel in almost every endeavor -- I did not much mess with strong hallucinogens. Fred has been evil, enjoying my anxious wriggling as he regales me with tales of giant insects patrolling the walls, mandibles clicking...
Yesterday, just as I was regaining my balance and telling myself I'd probably not hallucinate at all, not one bit, nary a millisecond... When I hit upon a woman's facebook page wherein she shares her experiences with this treatment. At the hands of the same doctor, at the same rehab hospital.
Oh my God, oh my God, oh my God! It involved her becoming an avenging angel styled after a character from the movie Avatar, green bubbles, and vomiting. Lots of vomiting.
Please pray for my sorry hallucinating ass come next Monday, March 14! Pray, especially, that if I am doomed to become some movie personnage, that I not dip into my cache of Mad Max obsessions. Aunty Entity might just claw her way out as soon as we hit the 100 milligram mark of that special, special K. Or Mighty Wez...
