Being a Crip is a Full-Time Job

I was struck today by the realization that way too much of my time every week is spent doing crip-related tasks, i.e. things I wouldn’t have to do, or could take care of a of faster, if I wasn’t disabled. 

It was my meds that started this train of thought barreling down the tracks.

I take an insane amount of drugs every day -- between prescription and over-the-counter meds and supplements, it’s somewhere in the neighborhood of three dozen pills, some liquids, and a couple of puffs of inhaled breathing meds.  Somehow I’ve managed to work all this into a four-times-a-day dosing schedule, but when you add in the time it takes for me to refill the weekly pill boxes I use, get prescriptions filled, and most of all, the time I spend waiting for meds (especially pain meds) to kick-in, I spend a lot of hours dealing with drugs. (If any DEA officials, my doctors, or my pharmacist is reading this, please note that reads “dealing with drugs”, not “dealing drugs.”  Can‘t be too careful about that distinction these days.)

The big time suck, of course, is personal care.  I feel some days like I spend half my life tending to stuff that used to take me maybe an hour a day total.  Okay, make that an hour and a half -- I drink a lot of water and have a really tiny bladder, so I’ve always made more than the average number of trips to the loo every day.  In the before-chair days, I could jump in the shower, wash and condition my hair, shave the pits and legs, get out and dry off, apply lotion/makeup/deodorant, brush my hair, get dressed and be out the door in just under an hour.

These days I’m lucky if I can get in and out of the shower in 30 minutes.  The assisted transfers from my chair to my shower bench add a few minutes in each direction, as does getting some of my gimpier body parts *cough*righthandandarm*cough* to cooperate with what I need them to do.  Even taking Navy showers, necessary both because I can’t just step out of the shower spray to soap up and to conserve water, doesn’t seem to speed up the process.  One of the things I miss most about being a walkie is the ability to take a quick, unassisted shower whenever I feel like it. 

The time spent showering, however, is nothing compared to the time involved with getting dressed and taking care of non-bathing personal care and hygiene. (Did you hear that noise? That was the sound of every ’plegic reading this simultaneously saying, “No kidding!”)  The damage to my spinal cord means it takes longer for me to get dressed and undressed (even with some help), brush my hair and teeth (don‘t get me started on the subject of flossing), and putting on make up and jewelery.  And without revealing TMI, it’s geometrically increased the time I spend attending to the call of nature. 

All that’s probably intuitive.  But what most TABs (shorthand for temporarily able bodied) don’t realize how much time and effort I, and many people who use wheelchairs, put into keeping our skin healthy.  If you’re not diligent, sitting for upwards of 12 hours a day, every day, can do some serious damage to your body’s largest organ -- pressure, friction, trapped moisture, and the most-dreaded of all for me, wrinkles, bunches, seams and elastic, are all  bombs with hair triggers.  Add to that the problems that can result when you’re not able to tell if you’ve developed a blister or cut yourself, and you’ll start to get a picture of why I devote hours each week to checking for and trying to prevent skin breakdown.  It’s worth every second I spend doing it, though, because the primary treatment for pressure damage is staying off of the area until it heals.  An hour a day of shifting my weight off of this, lotioning that, and having a look at those other things beats the hell out of laying on my side in bed for weeks, months, or even years at a time.

The rest of the extra time comes from ordinary tasks like getting me and my chair in and out of the car, preparing food, etc.  Each activity may only take a few minutes longer than before, but those minutes can add up pretty quickly.

All totaled, I figure disability-related tasks eat up almost 40 extra hours of my time every week.  Who the heck knew being a crip would be a full-time job?

I stand sit in awe of all you ‘plegics out there, especially you quads, who also hold down a job and/or take care of a family.  I have no idea how you find the energy to do it all.

An Open Letter to Emergency Department Physicians and Nurses

Dear Cynics,

I get it -- you’re burnt out from dealing with the seemingly endless parade of drug-seekers and addicts who march through the exam rooms in your Emergency Department. I really don’t blame you. I’m certain I’d struggle with keeping the more acerbic side of my personality in check if I was forced to listen to a relentless barrage of demands for narcotic pain medication from people too stupid or too stoned to realize how absurd their stories sound. It must be hard to not get cynical after seeing the same faces give the same thinly-veiled reasons for why they need opioids week in and week out.

But even if 95 percent of the people who come to you with complaints of severe pain are just hoping to score their next fix, that doesn’t give you the right to treat the five percent of us who really are dealing with unrelenting pain like shit.

Yes, Virginia, there really is such a thing a chronic pain. Although that description has become so associated with drug-seekers that most ER staff can’t say it without rolling their eyes, some forms of pain -- most notably central pain -- truly are relentless. And if you bothered to spend a few minutes talking to me about my medical history and what I’m going through instead of writing me off as soon as you see “pain” listed as one of my chief complaints, you might be able to understand that.

No matter how bad I‘m hurting, I make every effort to be a patient patient and to treat you with respect when I have no choice but to visit your ER. Is it really asking too much to expect you to extend that same courtesy to me?

The last thing in the world I want to do -- except keep enduring the agony I’m in -- is to ask for your help in getting the pain back down to a level where I can hang on for a little while longer. Coming to the ER means investing hours of time, risking ridicule and scorn because you prejudicially decide that I’m either faking or a junkie, and, after all that, getting sent home in as much pain as I started with but even more frustrated and desperate because you‘ve denied me treatment and taken away my only hope for relief.

Although you may not believe it, I hate the drug-seekers as much or more than you do. Prescription drug addicts are the reason I have such a hard time finding doctors willing to treat me, and am forced to sign 15 page contracts that leave me with no rights at all but allow the doctor to terminate treatment at any time for any reason. The junkies are the reason that even after five years of total compliance (i.e. no early refill requests, no “lost” prescriptions, and no filling prescriptions anywhere else), my pharmacist still treats me with suspicion. And as I’ve explained here, they’re the reason why you’ll only see me when I am at rock-bottom and utterly desperate.

So the next time your triage nurse hands you a chart for someone in chronic pain, try to put your addict burnout aside -- or at least on hold. There’s a chance that your next patient may be someone like me whose pain is physical, real, and overwhelming, and who legitimately needs something more than "Tylenol…Number Three.” If you treat me with respect, and listen to what I have to say with an open mind instead of through a filter of inherent distrust, I promise I’ll do the same.

Let’s Talk About Pain, Baby

This post is dedicated to dejerine, who has taught me more about pain and pain management in a year than the medical profession has in 30, and whose humor and keen observations about the lack of real understanding about central pain make me think, laugh and cry, often all at the same time.
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There’s an old saying, “You don’t know what you don’t know.“ 

After living with chronic pain for most of my life, I’m can say with certainty that doctors and researchers have no idea that they’re absolutely clueless about pain and pain management.  The reason behind the problem?  The doctors and scientists we rely on for help do a terrible job of communicating with us about the problem of pain and the solutions.

Let me illustrate with my story.

In scientific terms, I suffer from two very different kinds of chronic pain: nociceptive and central.  Nociceptive pain is the typical kind of pain people feel when their organs, soft tissues, or bones are damaged.  Central pain, in the most simplistic terms, occurs when nerves in the brain and spinal cord are damaged.  These injured nerves amplify their signals (and drag their healthy neighbors along for the ride), and the brain interprets this barrage of amplified nerve signals as a variety of obnoxious sensations: cold, metallic burning (dysesthesia); stabbing (lancinating); pins and needles; electrical shocks; pressure/swelling; and even itching, to name a few.  Spasticity (involuntary muscle spasms and rigidity) are also a form of central pain, although I think of it as a separate symptom.

I was able to cope with my pain (both kinds) and spasticity on my own for almost 20 years.  When I finally reached the point at which I needed help, I had no idea how to tell my doctors about how I hurt in “science speak”.  But I could do what I thought was the next best thing -- describe exactly what I was feeling.  I (naively, as it turned out) assumed that the specialists at the pain management clinic would both want and need to know, in as much detail as possible, what kinds of pain I had, where it hurt, how bad it hurt, how often each kind of pain occurred, how long each type of pain lasted, what triggered the pain (if anything), and finally, what relieved the pain (if anything).  Logic dictated that the better my doctors understood what I meant when I said I was in pain, the better they’d be able to come up with treatments that would help me manage it.

The clinic’s intake questionnaire seemed like the perfect opportunity for me to provide the specialists with a record of how pain affected my body and my life.  There were page after page filled with questions about the ways in which pain encroached on my ability to sleep, eat, work, and the other activities of every day life.  But to my great surprise, there were only a handful of questions about the pain itself.  The best opportunity I had to describe the types of pain I was dealing with was rough outline of the front and back of the body. 

Although the instructions said only to mark where I felt pain, I went a step beyond by mapping both where I hurt and the kind of pain that affected each area of my body.  It took me the better part of an hour to fill in the illustration and create a key that explained what type of pain was represented by each pattern: polka dots represented problems with spasticity and tone even though I already had a Baclofen pump.  Left-leaning hash marks indicated (I thought rather cleverly and appropriately) the butcher knife that would randomly plunge into my left shoulder blade and other lancinating pains.  Jagged Zs showed where electrical shocks raced through me, while tear drops revealed the acid that pooled just under the skin of my left arm and right leg when anything touched them -- even a tear drop or a puff of air would set me to burn.  And a series of squiggles marked the nociceptive pain that plagued me, including the persistent ache in the middle of my back  where the side-to-side and front-to-back curvatures of my spine intersected. 

The finished product was the most accurate representation of my pain that ever existed.  It was also a mess  -- there were so many different patterns overlapping in areas like the left shoulder and arm that the drawing appeared to be colored black.  (To this day, I can’t help but wish I had taken a set of colored pencils with me that day -- color coding would have been so much easier to distinguish than multiple designs.)

Only one question remained, and I thought the most difficult part of the questionnaire was behind me.  Then I read the question.

“On a scale of one to ten, with ten being the worst, how bad is your pain on a typical day?”

What?!?  You have to be kidding.  I had no idea how to answer that question. 

When you’re in pain, there’s no such thing as a “typical” day.  Anything and everything can trigger a flare up -- the wrong clothes, lack of sleep, stress, changes in temperature and/or barometric pressure, having scrambled eggs instead of sunny side up.  (I‘m only half-kidding about the eggs.  Blending the whites and the yolks with a little water to make them fluffy as they cook has triggered stabbing pains in my shoulder on more than one occasion.)  Should I consider today typical, or should I find the average of the highest scores from the last three? seven? ten? days and write that number down?

“On a scale of one to ten, with ten being the worst, how bad is your pain on a typical day?”  Reading it again only made it worse. 

At any given time, I’m under siege from multiple types of pain.  Which of them am I supposed to measure against that scale -- the worst one?  Or should I take the score for each kind of pain I have and come up with an average?  Should the average be derived from the “typical” score for all the pains or the highest flare up for each type of pain?  Maybe I should give one score for the nerve pain, another for the “regular” kinds of pain, and a third for the spasticity.

I sat and stared at the question for almost five minutes, trying to figure out the answer.   Nothing came, so I left it blank.

I spent an hour and fifteen minutes on the pain questionnaire.  The pain management specialist never looked at it once -- well, at least not while I was with him.  We talked about the tumor, the surgeries and the radiation that caused the damage to my spinal cord.  We talked about how the pain affected my sleep and my work.  We talked about my expectations for pain management.  We talked about how well my Baclofen pump was working.

The only thing we didn’t talk about, except in the most general terms, was the pain. 

It’s been the same with every doctor since.  Specialist or general practitioner, they all behave as though my pain is a single, homogenous entity.  They act as though I can adequately describe how pain affects my life by assigning it a numerical score at a random moment in time.  And they prescribe and evaluate the effectiveness of treatments without ever understanding the specifics of the problem.

And we let them. 

If we, the people who hurt, ever hope to get the relief we need, we must change the way we talk about pain, and force the doctors and researchers to change, too.  Instead of conversations about “the pain”, we need to talk about the burning, the stabbing, the spasms, the pins and needles, and the pressure.  We need to insist that our doctors stop talking in general about pain and start talking specifically about the kinds of pain we have and how well -- or poorly -- the treatments they’ve prescribed affect each one.  And we need to challenge the scientists who study new treatments to use the most specific definitions of pain possible when they perform their research and evaluate the results.

So let’s talk about pain, baby, just not about “the pain.”  They don't know what they don't know, so it's our job to tell them.