Puddy Tats Turn Tail on Thai Tuna

A few months ago, our cats went on a pseudo-hunger strike. 

After years of happily gobbling down every bite of Friskies tuna wet food that was offered, all twelve of the kitties we feed simultaneously refused to eat anything containing their formerly favorite fish.  And when even feral kitties -- whose choice of entrees is usually limited to lizards and bugs -- suddenly turn their noses up at any type of canned food, you know something’s up.

We looked at the labels of the remaining cans for a clue as to what changed.  The only difference we were able to discern between the universally scorned tuna products and the ones our kitties would eat was that the new cans were now labeled, “Pet Food Only.”  (I don’t want to think about why it was necessary to add that disclaimer.  Ewww.)  Everything else looked the same.

So we called Friskies.

It turns out that the folks at Friskies used to make all of their canned tuna cat food in American Samoa with fish caught near the Friskies plant.  But late last year, the Friskies plant was destroyed when a tsunami hit American Samoa.  Twenty two people lost their lives.

Not wanting to leave their customers without tuna cat food, Friskies contracted with a company in Thailand to take over production while the plant in Samoa was rebuilt.  Thai cat food producers use Thai tuna, which, according to kitties all over the United States, is apparently vastly inferior to the Samoan tuna to which they have become accustomed.  At the urging of the customer service rep, we looked at the label of the snubbed tuna wet food again, and sure enough, “Product of Thailand” was printed just above the bar code.

The mystery has been solved.

The good news for Friskies tuna-loving kitties everywhere is that the plant in American Samoa is back up and running, and the first batches of Samoan tuna cat fud will be back on the shelves in about a month. 

The good news for us is that the fine folks at Friskies are sending us a coupon for a free case of canned cat food.

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.

Quad Hands, in Haiku

Like wearing mittens
Every day, all of the time
But more frustrating.
_________________________

Trying and trying
To grasp a sheet of paper
Without crumpling it.
_________________________

With no sensation
You need to look and see if
It's still in your hand.
_________________________

“Get a grip on it”
Takes on a whole new meaning
When you have quad hands.
_________________________

I got it open
Using my own two hands. I
Didn’t need my teeth!

Traitors!

I am officially charging both of my arms and my right leg with High Treason.

As sources of unrelenting pain (left arm and right leg) and agonizing bouts of spasticity (right arm), they are aiding and abetting my sworn enemy, spinal cord damage, and causing grievous harm to their Sovereign.  In addition, my right arm and leg have exacerbated their traitorous behavior by refusing to obey my direct orders.

These blatant acts of disloyalty will not be tolerated.

Ideas on how to deal with the traitors are welcome. 

The traditional punishment for the crime of High Treason was drawing and quartering.  But I can’t see making my (mostly) innocent internal organs pay the price for the misdeeds of my limbs by burning them, and since I already feel like I’ve been cut into quarters…Well, you get the picture.

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.

ED Visits Gone Wrong - Georgetown Edition

I’ve mentioned before that I follow a lot of medical blogs, more than a few of which are written by folks who work in the ED (Emergency Department -- not Emergency Room, thank you very much).  After reading hundreds of tales in which doctors and nurses complain about the problematic patients they’ve encountered over the years, I’ve decided that the blogosphere is long overdue for stories about ED nightmares told from the patients’ point of view.

This is one of those stories.
_______________________________________________

I was a mess, physically, emotionally, mentally.

A month before, I’d started taking an anti-seizure medication with the hope that it would be the one that finally gave me some relief from the unrelenting central pain I’d endured for the last 25 years .  The experiment was a disaster.  Not only did the drug do nothing to quiet the pain, I suffered almost every severe side effect possible: nausea and loss of appetite, problems with short-term memory and concentration, insomnia, depression, dramatic weight loss, anxiety, exhaustion, tinnitus, and problems with my vision.  I couldn’t eat, sleep, focus, or stop crying, nor could I get a single moment’s relief from the lancinating and electrical pain tearing at my left shoulder and right leg.

I took the medication for 21 days in the hope that my body would adjust and the miserable side-effects would diminish, but that didn’t happen.  Magnified through the twin lenses of total exhaustion and unbearable pain, the symptoms actually got worse with each passing day. 

When I couldn’t take a minute more, I called my pain clinic for help.  My doctor was out, so I ended up talking to a resident who didn’t know me.  I patiently explained that I’d been working with Dr. X to find a protocol that managed my central pain, why I had taken myself off of the latest med, and asked if they could see me sooner than my next scheduled appointment (still two long weeks away) or prescribe something to help me cope with the pain until then.  The resident refused to do either, telling me that they “had to find the source of my pain before they could treat it.”  My response -- that the reason I was in pain was because a large tumor had been cut out of my central nervous system and took a significant chunk of my spinal cord along with it -- failed to impress him, and he continued to refuse to help.  When I tearfully asked how I was supposed to make it until my appointment, I was told to go to my local ED if my pain got “really bad.”  And then he hung up on me.

As you might imagine, this did little to help alleviate my depression.

Four days later, I was still crying my eyes out and still in agony.  I’d not left the master suite in our condo for close to a month, had no pain meds on hand, and saw very little hope for making it another ten days until my appointment with the pain clinic.  After listening to an impassioned plea from the HipHubby to seek some help, I reluctantly agreed to do as the pain clinic instructed and go to the emergency department at Georgetown Hospital.  Great idea in theory but a nightmare in real life.

The HipHubby and I arrived at the ED at 6:30 pm, and sat in the waiting room for the next four hours.  When I finally got called back at 10:30 pm, the resident on duty that night all but ignored my explanation that I was there because I felt I was losing my battles against chronic pain and depression and hoped to get enough pain relief to get a few hours sleep and talk to a psych resident about starting antidepressants. 

Instead, he became fixated on the fact that I was running a low-grade fever, and decided that tracking down and treating the cause of it was more important than dealing with my primary complaints.  Telling this resident that my general practitioner had already run a full battery of diagnostic tests during the last month that ruled out the usual types of infections -- urinary and lung -- didn’t dissuade him of his resolve.  As soon as his order to start an IV was completed, off I went, without the benefit of any pain medication, to have chest x-rays taken and urine samples collected.  He even ordered blood cultures, in addition to the standard diagnostic tests like a complete blood count (CBC), to rule out sepsis.  Only after another four hours had passed and the tests came back negative did he finally get around to giving me some Demerol for the pain and request a consult from the psych department.

It was 3 am -- eight and a half hours after I arrived in the ED -- before the third year resident from the psych department appeared at my bedside.  I shared with her my terrible experience with the most recent pain drug, but let her know there was more than that fueling my depression.  Dr. X, I told her, had promised me that he had “lots” of things to try that could help with my pain, but I was still without any relief after seeing him at the pain clinic for more than a year.  I made certain she understood that Dr. X was not the first to fail to deliver on his promises -- he was just the most recent.  And I confided in her that I felt adrift and alone, which was made all the worse when the pain clinic doctor whom I’d begged for help earlier today refused.  I was emotionally exhausted because doctors would give me their word that they’d help me, and then renege on their promises.

The psych resident listened with interest and, when I’d finished, assured me with a warm smile and the “I care about you, really I do” pat on the hand that there’d be no problem getting me started on some anti-depressants before I left.  But before she could write that prescription, I would need to submit to a complete psychiatric evaluation.  I agreed, and with the Demerol finally easing some of the physical pain away, felt for the first time in weeks that I might be okay after all.

The psych exam took almost two full hours to complete.  During that time, she explored my medical, social, and family histories.  She assessed my cognitive functions and perceptions.  And she evaluated my ability to care for myself and navigate the ins and outs of daily life, which included interviewing the HipHubby about my daily routines.

But the majority of the resident’s inquiries focused on the coping mechanisms I use and my ability to “appropriately” express my emotions.  The latter is always tricky terrain to navigate because it’s so subjective -- doctors and I have been known to have very different opinions about what constitutes a suitable reaction to certain situations.  For example, I think it’s perfectly natural to respond to the suggestion that I pursue in-patient psychiatric care with a sharp, succinct, and immediate “Fuck no!”  Doctors, however, seem to disagree, and have even made a permanent note in my chart about how strongly they disapprove of that reaction.

Fortunately, there were no such differences of opinion that night, and shortly after 5 am the psych resident announced she was going to call her attending to ask about which antidepressant she should prescribe.  It felt as though my release from the emotional prison in which I was being held was imminent.

It didn’t happen.  It took the attending psychiatrist less than two minutes to decide that prescribing antidepressants and referring me for outpatient care would be inappropriate.  If I wished, he said, he would admit me to their psych unit, but otherwise they would do nothing for me. 

I was devastated that the same problem that had brought me to seek help that night had just happened again -- a doctor had promised to help me, and then failed to deliver on that promise.  The psych resident  wouldn’t acknowledge that she’d just become she vowed to help me fix, and refused to call her attending back to appeal his decision.  She simply said she’d done all she could do, and walked away.

After almost twelve long hours in the ED, I’d had enough.  I took out my IV and, without waiting to see the ED resident who‘d taken charge on my care, we left.  No one seemed to notice -- we never got a second glance from any of the ED staff as I rolled out the door, nor did the hospital attempt any follow-up to my visit.  It should go without saying that my experiences that night made me more than a little reluctant to ever set foot in an emergency department again.

Gifts My Mother Gave Me

Happy Mothers’ Day, Mom.

Sure wish you were here with me so I could give you a hug and tell you all this in person instead of writing it down in a letter. 

I’ve been thinking of you a lot lately (Mothers’ Day does that to a person, you know), and I want to take a minute to thank you for everything you’ve given me.

Unconditional and Unending Love.  I don’t remember even one second in which I didn’t feel how much you loved me, although I can think of more than a few times when I felt less than worthy of it.  (Sorry again for those times in my teens when I lashed out at you in anger when you tried to make sure I got to medical appointments.)  You stayed with me during my darkest hours and believed in me when no one else did.  If everyone could experience the kind of love you gave me, Mom, the world would be a very different place.

Laughter.  Oh my goodness, have we laughed hard together.  There was the Christmas we spent in Florida when I was just getting sick.  We were playing the “Godfather” board game and when you just couldn’t catch a break, you got so frustrated you blurted out what became the only swear word I ever heard you comfortably utter, “Oh, poopshit!”  I thought Dad and I were going to throw up we laughed so hard.  And the time I came home from college, and you and I got flat out silly from dressing the dog (a mini-poodle) up in my baby jammies and old doll clothes.  Buffy didn’t see the humor in it all, but we sure did.  Even though we’ve shed far too many tears together, we’ve spent far more time laughing than crying.

Time and Attention.  You were the best “room mother” ever to walk the halls of Union Lake Elementary School.  You made hand-sewn Halloween costumes for me (and dressed up with me, too), and sand sculptures with me at the beach.  My lunch bags were works of art, and there was a note from you wishing me a great day in each one.  You were poetry in motion as you sailed past my gangly teenage friends at the roller rink when you took us skating.  When my hands didn’t work after the second tumor surgery, I made it through my 10th grade Accounting class because you spent dozens of hours entering the numbers I dictated into tiny boxes on ledger paper.

Stability and Security.  It felt like a pain some times when I was growing up, but I’m so grateful that we sat down together for dinner every night at five.  I could always count on you being there to pick me up from school in bad weather so I didn’t have to walk home in the pouring rain or heavy snow.  I never doubted for a moment that we’d be fine after you and Dad divorced even though I knew our financial situation was very different than it was when you were married.  You were always there when I needed you, whether I called to you in the next room because I was going to “fro up” or phoned you from thousands of miles away because I was scared of some new change my body was going through.

Money Management Skills.  As a Depression-era child who grew up poor, you knew better than anyone the importance of budgeting your money and never spending more than you earned, and you made sure I knew it too.  Because of what you taught me when I was growing up, I’ve never been in debt and have always paid all my bills on time and in full every month.  And you made sure I’d never have to go through the problems you had with establishing your own credit history when you divorced after thirty-plus years of marriage by co-signing for a Marathon Oil gas credit card in my name the day I turned 18.

And there’s so much more.  I was lucky enough to inherit your intuition and compassion for others, and blessed that you insisted I have good manners like sending hand-written thank you notes.  You taught me everything from a strong work ethic to how to get ink out of a shirt.  You gave me life once, and kept me alive when I wanted to give up twice. 

I can’t ever thank you enough for being so good to, and for me, but I hope that this is a good start.  Happy Mothers’ Day, Mom.  I’ve got a big kiss and hug waiting for you the next time we’re together.

All my love always,
Bean
________________________________________
Author’s note:  I lost my Mom five years ago.  She suffered multiple brain bleeds, lapsed into a coma, and passed away a little more than 12 hours later after her doctor continued to prescribed high doses of blood thinners even though he had already treated her for internal bleeding.  It all happened so quickly I wasn't even able to get on a plane to go to her before she died, and I never got the chance to say goodbye.   Although I told her at every opportunity how much I loved her, and said thank you to her often for so many things, this is the first time I’ve told her in such detail why I am so glad she’s my Mom.  I wish I’d done it a lot sooner.

Things I’ve Learned from Reading Blogs

Pharmacists are as just as pissed off as postal workers, but are a lot better at not acting on it.

It’s not a good idea to install an automatic shower cleaner without warning your spouse.


A lot of nurses hate National Nurses Week and being portrayed as warm, fuzzy huggers.

This woman is more clever before she has her first cup of coffee than most people are at the high point of their day.


The First and Last Patient of the Day/Night is a popular topic for doctors and nurses who blog.

There are extraordinary people out there who somehow manage to keep going in the face of problems that would make most people pull the covers over their heads and give up.

There are some truly twisted little old ladies out there.

Some doctors don't know crap about crap. (Colace, a stool softener, will only help prevent constipation, not cure it.)

Other doctors know way too much about other crap having to do with rectums and colons.

Other peoples' kids and cows rarely tire of a guy who can do a good, loud Moo.  The same cannot be said of his spouse and kids.

There's money and fame to be had by studying and publishing the obvious.

It’s All In Your Head

It seems that just about every one I know who has chronic pain or a condition that’s not immediately evident to a first year med student with a copy of Grey’s Anatomy has been sent off by one doctor or another to see a psychiatrist.  The last words the patient hears before being handed the referral to the MD’s shrink of choice: “It’s all in your head.”

Not literally, of course.  What the doctors actually say to their patients is, “I was unable to find anything wrong.” Or “There’s no clinical evidence of disease.”  Or the worst one of all, “You have a condition called somatization disorder/Briquet’s syndrome.”  Whatever the words that are used, the message the patient hears is clear -- I don’t believe you.  You’re making it all up.  You’re crazy.

Until you -- or your mother, son, husband -- have heard these words firsthand, you can’t possibly understand how devastating they are.

I was thirteen the first time a doctor told me that my physical problems were psychosomatic.  During a weekend trip to Toronto the year before, I developed a stiff neck that was so that I was unable to turn my head at all, and so painful that I had to sleep sitting up.  At first, my Mom thought it was the result of tramping around the city during a late season blizzard, and that it would resolve itself with the aid of time and a good heating pad.  But when I was no better after three weeks, she took me to see an orthopedic surgeon.  Dr. Ortho prescribed muscle relaxers and over-the-door traction but was unable to find the reason my neck muscles were so tight.  (He did, however, diagnose me with both scoliosis and hemihypertrophy, the latter probably being the cause of the former.)

After about six weeks of treatment, the stiff neck resolved itself.  But as soon as it did, it was replaced with a new set of problems: malaise, nausea/loss of appetite, and vomiting that resulted in dangerously rapid weight loss (30 percent of my body weight in less than three months).  Close to a dozen consultations with my pediatrician, internists, neurologists, neurosurgeons, and a gastroenterologist turned up nothing that would explain why I was throwing up every day, couldn’t eat, and had barely enough energy to drag myself to junior high every day.  The last doctor we saw told my parents in no uncertain terms that he believed my problems were mental, not physical, and recommended that they take me to a psychiatrist.

I wasn’t in the room when the doctor gave my parents his assessment, but that didn’t make it any less painful.  Being sent to a psychiatrist meant the doctors thought I was crazy or a liar (or both).  It meant that no one believed me (except my Mom, who never wavered from her insistence that there was a physical cause for my misery).  It meant that my Mom and I were now on our own.

Even though I wasn’t trying to lose weight, the psychiatrist, who I’ll call Dr. Ahab, diagnosed me with anorexia nervosa.  He put me on a high dose of Mellaril (a drug used to treat schizophrenia, a severe loss of contact with reality), and subjected me to weekly discussions about why I feared growing up and becoming a woman (I didn’t).  I was so physically sick that I was hospitalized for dehydration four different times.  At one point, Dr. Ahab tried unsuccessfully to convince my parents that the combination of outpatient therapy and antipsychotic medication was no longer enough, so I should be admitted to an inpatient psych hospital for children as soon as I was medically stable.

The message was hammered home: your body may be sick, but the problem is all in your head.  Inpatient treatment meant the doctor didn’t just think I was making things up, he thought I was crazy with a capital C.

That was one of the lowest points in my life.  Word got out at my school that I had been sent to a shrink and almost “put away” because I was faking my illness.  I was relentlessly bullied by some of my classmates, and singled out and embarrassed by my PE teacher.  And although my body temporarily healed itself during that time, my spirit became progressively more wounded.  A year and a half later, Dr. Ahab finally decided I was ready to be released from his treatment.  But by that time, the damage was done.

I enjoyed six trouble-free, psychiatrist-free months before I lost the use of my hands.  At first, I noticed that it was getting harder to play my viola because I couldn’t keep my fingers in the right place on the fingerboard or hold the bow correctly. Within a month, both hands were curled into fists and I was using my wrists to open doors and lift food and beverages to my mouth (I ate a lot of hot dogs).  And sure enough, when I showed my parents how bad things had gotten, my Dad whisked me straight away to a new psychiatrist, who handed me a pencil and paper and told me to draw the objects she’d posted on her wall.

My first thought was, “I’m so screwed.“  I couldn’t extend my fingers from where they curled into my palms, and my hands were so weak I had no grip.  Even if I did manage to hold the pencil tight enough to draw, the lack of control I had over my hands was sure to produce shapes that would make it appear  as though I had no grasp on reality.  I was sure before I started that this was game over, and I’d be heading straight to the psych hospital after this appointment. 

Thank goodness this wasn’t Dr. Ahab, or even someone who shared his mindset.  This new psychiatrist recognized that there really was something physically wrong, and referred me to a new neurologist (number six, if anyone‘s counting).  After two more months of doctors and diagnostic tests (including an electromyogram and myelogram), I was diagnosed with an astrocytoma, grade III (anaplastic astrocytoma) , of the cervical and upper thoracic spinal cord, my Mom and I were finally able to prove that all of problems were physical, not psychiatric, in nature.  As strange as it sounds, hearing that I had cancer was, for a brief moment in time, a huge relief because it was real.

This experience changed how I thought about doctors.  Primary care physicians and specialists are viewed with suspicion.  I no longer believed that they will listen to or really understand what I told them, or that they would make every effort possible to figure out what was wrong with me.  Psychiatrists and other mental health professionals are adversaries who are not to be trusted. 

I wish I could tell you that my experiences in the 30 plus years that have passed since then have convinced me otherwise.  I wish I could tell you that I was the only one who’s experienced this.  And I really wish I could tell you that I believed no one would ever tell me again that something I know to be real isn’t.

I may sound cynical, but I believe that's probably typical of anyone who's been repeatedly told he/she's crazy. But based on my experiences, the best I can hope for is to have what I do right now -- something that I didn’t have when this first happened: other people who been there and done that, and who understand why I get so angry when a doctor even suggests that my pain, or anything else I’m experiencing, is all in my head.

No, I’m Not Okay!

There’s nothing covering my left shoulder blade except a few paper-thin layers of skin.  Twenty-some odd years ago, a plastic surgeon moved the trapezius muscle that’s supposed to be there over to the center of my neck/upper back and used it to cover an incision that wouldn’t heal.  In its place is skin taken from the back of my left thigh. 

With no protective padding of any kind, that area is, to say the least, exceptionally sensitive.  Even the lightest touch hurts -- it feels as though the bone itself is being prodded and poked.  Putting pressure on the scapula is so excruciatingly painful that it nauseates me.  If the pressure lasts too long or is caused by a solid, unforgiving surface, the grafted skin will open.

Now picture this scene.  The plane has landed at my destination, and I’ve just transferred from my seat into the ancient, high-backed aisle chair -- the one with that’s got nothing but grey metal above the thinly-padded back rest.  As soon as the last strap is buckled, the airline employee who brought the hard, narrow chair to me tips it back 45 degrees, slamming my unprotected shoulder blade into the bare metal of the backrest.  My eyes fill with tears, and I utter a sharp cry as the pain-induced nausea engulfs me.  The longer he keeps me flat on my back, the worse things become for me. 

I try to let him know what the problem is, to explain that this position is unacceptable because it makes me feel as though a butcher knife has been plunged into my shoulder blade and is slowly being twisted around.  But he’s already decided that the tears and the sounds I’m making are because I’m scared, so instead of listening, he’s busy replying to what he thinks I’m going to say.

“You’re okay, you’re okay.  I understand.”

“No, you don’t understand!  I’m in pain -- severe pain.  I can’t stand to be tipped back on my…”

“I understand.  You’ll be okay,”

It infuriates me when TABs (people who are Temporarily Able-Bodied) do this.  What they intend as reassurance is actually nothing more than thinly veiled condescension -- by disregarding what I’m telling them, they’re substituting their judgment for mine and sending a clear message that I couldn’t possibly know what I’m talking about. 

I wish I could say that not being listened to was an infrequent occurrence,  but that’s not the case.  There’s a widespread perception among the general public that the wheels that I use to get around are a substitute for my brain instead of my legs.  Not only do people stop listening to you when you use a wheelchair, they also stop talking directly to you and speak to your companions about you.  When this happens, it explains a great deal about how and why people with disabilities became known as “invalids.”

Sadly, it’s not just uneducated strangers that decide they know better than I do what’s good for me.  I’ve had friends and family members to me not listen to my objections that I wasn’t in the right position to transfer.  Doctors and nurses have sworn to me that some medical device or another that I knew to be malfunctioning was working just fine.  And co-workers have told me that I really didn’t need to take a break or be on those pain meds if I would just push myself a little more. 

Having been an almost-TAB for many years, I know that my protests that I’m not okay would never be summarily dismissed the way they are now. At the first sign of my distress, everything would stop, and those around me would work with me to make sure everything was all right before proceeding.

I know I’ve changed since then, but those around me have changed too.  The difference?  It’s my body that’s changed, but it’s their attitudes toward me.  And you know what?  The way it makes me feel is not okay.

I only wish they would listen when I tell them that.

My Trip to Puerto Rico, By the Numbers

Transfers In and Out of My Wheelchair: 38

Hours Spent in Airports: 7

Hours Spent on Airplanes: 2

Transfers On and Off Planes in an Aisle Chair: 4

Bodily Injuries Sustained While in an Aisle Chair: 3

Gawkers Staring During Use of Aisle Chair : 37

Airline Preboards for Wheelchair Users: 1

Medical Appointments: 2

Hours Spent at Medical Appointments: 3

Hours Spent Traveling to/from Medical Appointments (including Air Travel): 12.5

Cost of Medical Appointment Co-Pays: $178.36

Cost of Travel to/from Medical Appointments: $859.74

Taxis Summoned: 5

Taxis Actually Taken: 2

Hotel Beds Used: 1

Hotel Pillows Used: 11

Urine Collection Bags Used: 3

Embarrassing Incidents Involving Urine Collection Bags: 3

Birthdays Celebrated: 1

Birthday Good Wishes Received: 57

Other Birthday Celebrations Encountered: 2

Top Ten Reasons Why People Seeking Treatment for Chronic Pain Just Can’t Win

1. When it comes to describing chronic pain, the 1-10 pain scale is completely useless.  Among myriad other problems (including the fact that it’s subjective and relative), it lacks the capacity to reflect the devastating effects of enduring unrelenting pain over long periods of time.
2. The 1-10 scale has become a psychological guessing game.  Pick a number too low, and the doctor or nurse treating you is likely to respond, "A three? It’s a THREE man, a THREE. Get a hold of yourself! For threes, we use Tylenol. Here' s your paper. See the clerk out front."  Respond with a number that they think is too high, and you’re deemed to be a drug-seeker, a drama queen, or a faker because anyone who “really had pain that was an eight/nine would be [insert particular behavior the medical professional feels all people who are really in severe pain exhibit].”
3. If you refuse to use the 1-10 scale to rate your pain (see items 1 and 2), you’re uncooperative and won’t get treated.
4. When you go to the Emergency Department (ED) because your regular pain medications aren’t helping, admitting that you take strong narcotics is viewed as proof that you’re a drug-seeker and you don’t get treated.
5. If you don’t admit that you already take strong narcotics when you go to the ED because your regular pain meds aren’t helping, you won't get treated with drugs that are appropriate for someone with a high baseline tolerance level.
6. If you tell a doctor that what you want are pain meds that work without causing dependency, sedation, or other harsh side effects (like chronic constipation, weight gain, dry mouth) and you’re told you’re being unrealistic.
7. If you tell a doctor that you want to try opioids or need a specific narcotic for pain relief, you’re back to being a dismissed as a drug-seeker.
8. Telling a doctor too often or too adamantly that the pain meds s/he’s prescribed aren't helping and you’re still in severe pain is evidence of drug-seeking behavior.
9. Telling a doctor that you can barely make it to your next refill is evidence that you’re either diverting your meds or abusing them, which is of course evidence of drug-seeking behavior.
10. Telling a doctor that you save your narcotic pain meds for the times when you really, really need them and you’re hoarding meds, which is also drug seeking behavior.

The moral of the story is that there is no way for people in chronic pain to win with some doctors. All too often, they’ve made up their minds about us before they’ve even talked with us, and nothing  we do, say, or explain will change their opinion.

All I Knew Was That She Never Left My Side

I started to feel like eating again about a week after the second surgery for my spinal cord tumor. I was still in the ICU, still in more pain than I’ve ever felt before (and since), and still unable to move anything below my shoulders. But I was finally feeling a little hungry and growing weary of my all liquid diet, so it was a moment of great relief when my doctors allowed me to start eating again.

Over the next two days, I worked my way up from sips of consommé and Sprite to spoonfuls of applesauce and mashed potatoes. My surgeons were concerned that allowing me to sit up too soon might re-open the incision that stretched from the base of my skull to the middle of my back, so I had to eat while laying flat on my back. Despite the less-than-optimal position and the risk that I wouldn’t be able to tolerate food after not eating for so long, everything went down and stayed down. So far, so good.

As the amount of food I was able to eat increased, so did my desire to indulge in some real food. And like most other 15 year olds, the thing I wanted most was pizza -- not just any pizza, mind you, but one from the little Mom and Pop pizzeria near my home, some 40 miles away.

And that’s just what my Dad brought me the next day when he came to visit. I didn’t matter to me that it was ice cold and most of the cheese had been lost to the top of the cardboard box. It was food with texture and flavor that I could chew. It was far more than just pizza -- it was a taste of my normal life, and a taste of home.

My Mom rounded up a plastic knife and fork, and a paper plate, from the nurses station. She was my rock from the first day I got sick, never doubting for a minute that my problems were physical even though doctor after doctor could find nothing wrong. Mom was nervous that I was pushing my already overtaxed body too hard, but she knew that I needed to take in as many calories as I could to help myself heal.

The first tiny bite my Mom fed me was heaven. It really wasn’t much more than a bit of crust topped with a spot of tomato sauce, but after eating nothing but soft, bland foods for days, the taste of garlic and oregano almost overwhelmed me. The look of joy on my face must have said it all -- both my Mom and Dad burst out with big grins and visibly relaxed, the first time either of them had smiled since they were told by the neurosurgeon that I had made it through the 16 hour surgery and was on my way to the recovery room. Over the next hour, I managed, with my Mom’s help, to finish off just over half a slice.

All seemed to be well, so my Dad kissed me goodnight and headed for home. Mom was going to spend the night with me at the hospital, sleeping next to my bed in a well-worn naugahyde recliner the nurses scrounged up. As soon as my nurse finished taking my vitals and giving me a much needed -- and appreciated -- shot of morphine, we settled in for the night.

I’d barely finished telling my Mom how much I loved her before I started to vomit. From the first sound of my distress, she was out of the recliner and calling for help. Mom did her best to keep me from choking, but was too terrified of ripping my incision open to turn my head to the side. Every trace of the relieved, smiling Mom who’d helped me eat dinner less than an hour before was gone.

My room was right across from the nurses station, and a nurse named Mary was at my bedside in seconds. Acting purely on instincts honed by years of training and experience, Mary quickly forced my head to the right just as my stomach heaved again. At that moment, preventing me from breathing in any of the vomit, not the healing wound on my neck and back, was her only concern. Despite the burst of pain that hit me as the adhesive tape holding the surgical dressings in place tore loose from my the back of my neck and head, it was a relief to get the foul liquid out of my mouth and be able to breathe without fear of suffocating.

The retching stopped as suddenly as it began. I thought the worst was over, until Nurse Mary told me that to prevent further vomiting -- and eliminate any chance that I would either choke on or aspirate it -- she needed to put a tube into my stomach as quickly as possible. This nasogastric (NG) tube, she explained, would be fed up through my nose and down the back of my throat into my stomach.

Already badly shaken, out of breath, and worried that my incision had been opened, the news that a tube was going to be shoved up my nose was more than I could take. The tears started to flow, and I managed to choke out a desperate request for my Mom to hold my hand and promise not let go just as Mary‘s colleagues arrived to start the procedure. Even though watching any medical procedure made her nauseous and faint -- never mind those being done to her youngest child -- Mom grabbed my right hand, squeezed it tight, and assured me she’d stay with me the whole time.

The next few minutes were a dizzying blur of sensations and sounds. The end of the NG tube, which seemed to be impossibly large, scraped against the inside of my nose as it was threaded up through my nostril. Unpleasantness became outright discomfort and my anxiety skyrocketed as the stiff plastic passed through the sinus cavity and started down the back of my throat, making me want to sneeze, cough, and blow my nose all at the same time. And then it hit my gag reflex. I tried as best I could to follow Mary’s insistent commands of “Swallow, swallow, just keep swallowing!” even as my throat tried to close up. Yet through it all, the comfort I felt as my Mom reassuringly squeezed my hand and called to me that it would be over soon eclipsed everything else.

My efforts to make it easier for the tube to go down must have worked, because in less than a minute it was done. Mary quickly secured the NG tube, which I was delighted to realize didn’t bother me at all now that it was in place, and proceeded to relieve me of everything that remained in my stomach while one of the other nurses went to get the supplies needed to replace the loose dressings. I burst into tears one final time that night when Mary told me that my incision was in tact and the doctor on-call that night would not need to put in more surgical staples.

As she promised, my Mom stayed with me through every awful minute, never letting go of my hand even for a second.

My Mom and I told that story to many people over the years. And every I said how grateful and proud I was that she overcame her squeamishness to hold my hand that night, my Mom responded the same way: with a red-faced grin and a twinkle in her eyes.

I always thought that it was my praise that embarrassed her so much.

It took her twenty years to finally tell me why she got so embarrassed every time I lauded her bravery. Although I assumed she was standing next to me the whole time the NG tube was being placed, in reality she’d come so close to fainting at the mere thought of what was to come that she had to crawl completely under the bed in order to keep her promise.

Spinal Cord Injury Envy

As awful as this may sound, every once and a while I get jealous of people who’ve become paraplegics and quadriplegics (‘plegics from here on in -- it’s less cumbersome to say and a whole lot easier to type) as the result of a spinal cord injury (SCI).

I’ll take a short pause here so those readers who feel the need to do so can express their disbelief and outrage that anyone would ever say such a thing before they (hopefully) continue reading.

It isn’t easy for anyone to deal with spinal cord damage, paralysis, and all of the garbage that comes with it. However, from where I sit, becoming a ‘plegic in the blink of an eye seems to have some distinct advantages over ’plegia that comes on incrementally as the result of a progressive, degenerative condition.

Advantage #1: The Possibility to Grieve and Move On
Everyone who acquires a serious disability will, at some point, go through the process of mourning what they have lost. When that disability happens in a heart beat, there exists the possibility to grieve the loss, come to accept it (even if that acceptance is uneasy), and get on with the business of living your life. This does not happen with everyone, nor does it necessarily happen quickly, but generally you only go through the grief process once.

With a degenerative condition, each new loss can start the grieving process anew. Just when you’ve finally come to accept the reality that you’ve lost your ability to walk and now need to use a wheelchair, you may find your hands have grown too weak to hold a pen, and it all begins again. When the changes occur in rapid succession, life can become one prolonged session of mourning.

Advantage #2: Things Can Always Get Better
While there are exceptions to the rule, most progressive conditions, as the name states, cause those who have them to go from their best to their worst. There may be plateaus of stability, and even time when you are able to recover some of what was lost in the last decline, but for the most part, it’s a downhill ride.

With a SCI, you pretty much start off at your rock-bottom. There’s always the possibility that over time, as the swelling of the spinal cord abates and the body tries to heal itself, that part of what was lost will come back. Working hard at maximizing what you’ve got almost always results in improving your level of functionality, which brings us to…

Advantage #3: Going to Rehab (Not the Amy Winehouse kind)
Rehab is boot camp for crips. It’s an individually-tailored crash course designed by a team of multi-disciplinary experts in SCI (including but not limited to physiatrists, nurses, urologists, therapists, mental health professionals, and even other people with disabilities) that helps prepare the newly-injured to live as independently as possible. Using a variety of therapies (physical, occupational, recreational, social, etc.), rehab teaches people with SCI how to do the activities of every day life, with or without assistance -- getting dressed, going to the bathroom, cooking, cleaning, grooming/hygiene, getting in and out of your wheelchair. It’s about building strength, endurance, and coordination, and to maximizing functional recovery, all under the guidance and direction of experts who know what you need to do, and work with you (and on you) to get ‘er done.

The vast majority of people who come into their ’plegia a little bit at a time, over a long period of time, never get the benefit of intensive rehab services. As a result, most of us end up just making it up, and making do, as we go along. We fend for ourselves, without the advice and guidance of professionals knowledgeable about SCI because we don’t know who those experts are or how to find them. Fortunately, the Internet has made it easier to find answers to our questions, but it’s a poor substitute for having direct access to a multi-disciplinary team of experts during the earliest onset of your ‘plegia and all of the challenges it brings.


I realize, of course, that seeing all these advantages isn’t really an attack by the green-eyed monster -- it’s buying into the a fantasy that the grass is always greener. I’m sure that somewhere out there is a quad survivor of an auto accident with her own list of reasons why becoming a ‘plegic in stages would be a lot better than waking up paralyzed.

The truth is that every ‘plegic, regardless of how we became that way, faces the same challenges: making -- and keeping -- ourselves as independent as possible; dealing with the “perks” of SCI/D (injury/damage) like central pain, bowel and bladder management, and spasticity; and living the life we want to live in a world that’s not always as accessible as we need it to be.

Truth be told, I’m actually quite okay with how my life’s played out. Of course there are rough patches (some rougher than another), but I always manage to get through them. I just need to stay focused on making the most of the time I have between the declines. If I can do that, I’ll be a lot less inclined to wonder if my life would be better on the other side of the fence.

An Open Letter to My (Currently) Med-Free Friends

Dear Med-Free Crips with Chronic Pain,

I truly appreciate your commitment to remaining med-free for as long as possible. Believe me, I completely understand why you don’t want to use pain medications unless absolutely necessary. As your friend, I hate it that you have to hurt at all, but at the same time, I’m happy that you’re able to avoid all of the negatives that go along with them. The stigma, cost, and side effects that come from using narcotics to manage chronic pain, while not as devastating as the pain itself, can still be heavy burdens to bear.

What’s harder for me to appreciate, however, are the arguments that being med-free is all about having a strong will, successfully using “mind over matter” techniques (e.g. positive thinking, “blocking” out the pain, distraction), and taking the more difficult path, and that it has nothing to do with how severe one‘s pain is.

Such statements are troubling not because of what they say about the people who don’t yet use pain medications, but because of what they infer about those of us who do: that we are taking the easy way out. That we are less focused and less disciplined. That we lack willpower.

I hope you can believe me when I say that I’m not trying to dismiss or make light of your pain, or how you choose to deal with it. What I am trying to do is help you understand is that it’s hurtful and insulting to have these negative, inaccurate inferences about those who need narcotics to manage pain brought up again and again, and that from my experience, the severity of the pain does affect how well those “mind over matter“ techniques work.

You see, I was once where you are now -- able to successfully cope with the pain that’s been my ever-present, unwanted companion for years without taking any medication. I kept busy, got adequate rest, and “talked” my body out of succumbing when the pain flared. I practiced all of the same things I do now -- controlled breathing, progressive relaxation, immersion in distracting tasks. And for a long time, I managed to get by.

But as time passed, the tools that I’d successfully used for so long became less and less effective -- despite spending more time practicing my breathing and relaxation techniques, and throwing myself into my work and hobbies, I was getting almost no relief, and the little bit that I did get wasn’t lasting as long. Finally, the day came when I wasn’t able to get enough relief on my own, and I had to accept that I now needed to use medication -- in my case, narcotics -- in order to have any quality of life. It was a huge hit to my self-esteem. I took great pride in my ability to use nothing but my mind to keep the pain from crippling me -- relying on pain drugs made me feel weak, angry, and embarrassed. I thought it meant I had lost my drive and determination.

But the more I thought about it, the less sense that made. My basic personality hadn’t changed -- I was still the same stubborn person with the same positive outlook on life. I was still able to use my “mind over matter” techniques to manage stress -- in fact, getting relief had become easier, not more difficult. And I knew in my heart that my decision to finally start using pain meds was anything but easy. The only possible explanation for this change was that the pain had become so severe that even my most skilled use of positive thinking or “blocking” couldn’t keep it at bay.

That’s not to say that I’ve abandoned those techniques now that I use narcotic pain meds. Quite the contrary, in fact -- it’s those very skills that now enable me to keep my use of pain drugs as low as possible.

And that’s why I have such a strong negative reaction when I hear you declare that being med-free is all about asserting mind over matter -- not because of what it says about you, but because of what it infers about me.

The Aging of the Peeps

For Christians, Easter is resurrection and salvation, the holiest day of the year.  For children, Easter is colored eggs, baby chicks, and a giant sugar buzz (second only to Halloween), courtesy of a giant invisible rabbit who delivers baskets of treats in the dark of night.  For chocoholics, Easter is biting the ears off of a solid milk chocolate bunny.  But for me, Easter -- or rather the day after Easter -- is the beginning of a decades old ritual known as The Aging of the Peeps.

It all started when I was a child.  Every year, the Easter Bunny (aka my Mom) would fill my basket to overflowing with goodies of all kinds, including no less than two packages of marshmallow Peeps.  Soft, sticky, and cloyingly sweet, I learned early on that these little yellow chicks (this was way back when, before Peeps came in a rainbow of colors and shapes) were disgusting when consumed fresh from the package but became delicious when exposed to the air and allowed to grow stale and hard.  And thus, the Aging of the Peeps began.

Of course, I didn’t call it that back then.  The process of poking holes in the tightly-stretched cellophane wrapper and leaving the Peeps in a dark place to ripen had no official moniker in the beginning.  It was almost twenty years later that I discovered that I wasn’t the only one who preferred to enjoy my Peeps well past their expiration date, and that the ritual had an official name.

My enlightenment happened when I was driving home from work one Ash Wednesday.  I was only half-listening to the National Public Radio station that was always on in my car when the word Peeps caught my attention.  I turned up the volume, and started to grin as I listened with utter delight to the narrator describe my Aging of the Peeps, from the proper way to violate the sanctity of the protective wrapper (the artful poking of holes instead of a crude slash) to the proper amount of time for the Peeps to ripen (46 days, the same amount of time that passes between the beginning of Lent and Easter Sunday). 

The only point on which we disagreed was whether the Aging of the Peeps should take place before Easter or after. The narrator argued that the Peeps should be exposed to the air on Ash Wednesday so they can be enjoyed on Easter morning.  The Purists, who discovered the joys of stale Peeps as young children, believe that the Aging of the Peeps should begin on Easter, the same day they received the treats in their Easter baskets.  But the Cheapos like me know that Peeps age the best starting the day after Easter, when you can acquire them for pennies a box during the After Easter clearance sales.

I’ve already got this year’s brood of yellow candy chicks picked out.  And on Monday, the HipHubby and I will get up early and head to the store where they’ll be waiting for me, their unblinking purple eyes bright with the promise of sugar rushes to come.  Upon our return home, we’ll take a meat fork and gently but firmly poke ten holes in the wrappers of each box, being careful not to mutilate any of the Peeplets in the process. We'll tuck our treasure safely away in the dark to let the air works its magic. And then we'll wait.

May 21 can’t come soon enough.

Oh My God, Did *We* Kill Kenny?

The HipHubby and I played around with the South Park Character Creator this week.  Here's our South Parkian self-portrait.



Unfortunately, the program didn't offer wheelchairs as a character accessory, so I had to settle for standing next to a Timmy doll to represent my crip-ness.

Cute couple, aren't we?

(Can you tell from the HipHubby's costuming that he's an avid MMORPG* player?

________________________

**MMORPG = Massive Multiplayer Online Role Playing Game

Butte Münsch, or How Dare You, Part Two

Well, my friends, it turns out that this HipCrip ain’t so hip after all.

Remember Mark, my friend with ALS for whom I made an impassioned defense after his doctor declared it would be a waste of resources to treat when he was admitted to the hospital in Butte, Montana? Well, it turns out that neither Mark nor the doctor really exist.

Thanks to some impressive sleuthing by some very savvy (and very real) folks at the web site where I got to know “Mark”, it was discovered that MarkPALS was just one of many fake personas created by a woman as part of an elaborate scheme to gain attention by feigning illness or a disabling condition. Disturbingly, this wasn’t the first time this twisted woman had posed as a person with a disability -- she’s pulled similar scams at this and other web sites as far back as ten years ago.

I feel more than a little naïve for not being hip to this case of Münschausen by Internet. There were signs, of course, that I can now see clearly with the advantage of hindsight but missed or disregarded at the time. But it helps ease my doubts about whether I’ve lost some of my usually spot-on gut instincts that I wasn’t the only one who fell hook, line, and sinker for the web of lies spun by this Butte Münsch -- a LOT of folks have come forward to say that they, too, had become emotionally invested in “Mark” and his “family.”

Even though the discovery that there is no such person as Mark has left me discomfited, I’m not at all embarrassed about having made my “How Dare You” post. The story of MarkPALS’ illness and hospitalization may be pure fiction, but the horrific attitude expressed by the imaginary doctor -- that there are people whose quality of life is perceived to be so poor that they should not be treated -- is all too real. I’ve experienced it personally, when, without ever discussing the issue with me, a medical professional indicated in my hospital chart that I was DNR (Do Not Resuscitate), and have had several other people with significant disabilities tell me of similar experiences. The scenario that sparked my post was fake, but my outrage over it is real. For that reason, I’m going to keep that blog entry up, but update it with an appropriate introduction.

Given that this whole situation has reignited my outrage, it’s only appropriate that I end this the way it started.

There’s a woman in Butte, Montana who’d better than whatever god she prays to that she’s several thousand miles away from me, because she is now a marked woman.  This psychic vampire pretended to be someone with a severely disabling condition, insinuated herself into the lives of a lot of good-hearted people, and preyed upon their feelings without regard for the emotional devastation her actions would cause.

To quote Eric Cartman, “I.Am.So,Pissed.Off.Right.Now.”

A psychiatrist has dubbed this Münschausen by Internet, but I call it unmitigated gall.

This woman spent years creating online characters that would garner sympathy and make her feel important, not caring how her artificial dramas affected real people. In doing so, she not only stole the time and energy that these real people invested in her fantasy world, she left in her wake an epidemic of self-doubt, sorrow, and distrust.

But it doesn’t make me sad when this happens.  It makes me angry.

So, Butte Münsch, you are on my list of those who will be the first up against the wall when the revolution comes.  And as the blindfold is tied around your eyes, you will hear my voice asking how dare you make a mockery of the real struggles faced by people with chronic or disabling conditions by faking a serious disability? How dare you come into my community to feed upon the kind and caring nature of my friends? How dare you use your utter lack of a meaningful life in the real world as justification to emotionally rape hundreds, perhaps thousands of people, using the Internet?

How dare you.

Pure Pleasure

It was a moment of bliss -- an idyllic point in time when all was right with the universe.  Past and future ceased to be as pure pleasure nourished my body, mind, and spirit. 

It’s a safe bet that there aren’t many people who feel that way about laying down in a hospital bed.

There was nothing special about the bed itself.  It was a typical “old school” twin bed -- replete with a plastic-coated mattress, side-rails that ran the full length of the bed, and a pair of well-worn hand cranks that stuck a little at the 3 o’clock position each time they were used to adjust the height of the head and foot of the bed.  Like the hundreds of other beds filling the rooms of the aging hospital, it was made up with hospital issue linens -- two white flat sheets worn thin from years of use and washing in hot water and bleach, each tattooed deliberately with the thick black letters “UMH” and inadvertently with small, faded bloodstains, ghostly reminders of the countless others who once lay between them hoping to rest, heal, and go home to their own bed.

The one thing that made this bed different from all of the others was the pillow.  Instead of the standard issue, shapeless, thin hospital pillow with the plastic casing that crinkles loudly with each movement, no matter how gently executed or subtle it was, waiting for me at the head of the bed was *my* pillow.  My boyfriend had brought it for me after slipping it into my favorite freshly laundered cotton pillow case, smooth and soft from years of use and rich with the scent of home.

I couldn’t see any of this at the time, though, even though the bed was within an arm’s length of me.  The only sights within my field of vision were the same slightly yellowing ceiling tiles I’d been staring at for the last six weeks, two hours at a time before being flipped over, like a pig on a spit, to spend two hours staring at the well-worn floor tiles and the footwear of those who ventured into the corner of the room I shared with two other patients on the neurosurgical floor of the hospital.

As I waited, my anticipation building in time with the activity that around me, I gripped the edges of the Stryker frame one last time.  After so many weeks, I’d finally become accustomed to how narrow it was -- how I needed to press my arms tightly against my sides in order to rest them on its metal edges..  I remembered the early days and how still and silent I lay, terrified that if I moved, I would crash to the floor.  I’d suffered for years from a form of vertigo that made me feel as if I was suddenly falling out of bed, no matter how much mattress stood between me and edge -- how in the hell would I ever survive my time on something so narrow and seemingly flimsy without being in a constant state of terror? But as the days passed, the width of the frame became less and less of an issue, until I somehow became acclimated to laying, and sleeping, on something barely wider than my hips.

And then it was time. 

The crew of nurses had finished all of their preparations.  The Stryker frame was pushed up next to the freshly made up hospital bed, and the complex tangle of cables and weights used to hold my spine steady as it healed were carefully disconnected from my halo. (The traction weights would be reattached to the halo once I was in the bed.)  When they were satisfied that it was at last safe to move me, my favorite nurse, Marian, leaned over me from my left, squeezed my hand (she was one of the few nurses who could remember which of my arms could still feel pressure), and, with her eyes dancing with excitement for me, asked if I was ready.

“You have no idea how ready I am.  If I never see another Stryker frame, let alone find myself doing an involuntary horizontal pirouette while sandwiched between two cheesy remnants of discarded WWII army cots, it will be way too soon.  Let’s do this.”

Marian gave a quick glance in the direction of each of the three nurses she’d recruited to help with the transfer, then counted off, “One.  Two. Three!”

After a few seconds during which I seemed to levitate, it happened.  I was in a real bed.



I sank into the mattress with a contented sigh.  After laying for so long on little more than wide strips of canvas, it felt deep and plush, and at that moment I would have sworn on my mother’s life that it was stuffed with goose down and clouds.  At long last, my head was cradled by my own pillow, soft and familiar, a small slice of heaven even though the halo and the bolts that secured it to my skull prevented me from melting into it as completely as I would have liked.  But nothing compared to the wonder of having acres of mattress on either side of me.  I couldn’t stop moving my hands over the vast expanse of cool sheets that lay between me and the edge of the bed, marveling at how big a twin-sized bed really was.

No bed has ever felt so good.

Nine Times

Ms. Powerco:  “Good Morning, WAPA Outages.” That’s short for the Water and Power Authority, the Virgin Island’s utility company.

Me:  “Good morning.  Our power has just gone out for the ninth time in the last 24 hours.”

Ms. Powerco:  “I’m sorry, how many times did you say?”

Me:  “Nine.  Nine times.”

Ms. Powerco:  “Nine times?”

Me:  "Niyine times.”   Despite my best Ed Rooney imitation, the tribute to quintessential 80’s movie Ferris Bueller’s Day Off went right over her head.  “What’s the problem?”

Ms. Powerco:  “The whole feeder line is down.  They‘re working on it now.”

Me:  “Have you identified the problems yet?  Isn’t there something that can be done to prevent this?”

Ms. Powerco:  “I wouldn’t know.  We’re not responsible for the physical plant.”

Me:  “Excuse me?”

Ms. Powerco:  “This is a physical plant problem.  We’re not responsible for the physical plant.”

Me:  “Well, if you’re not responsible for the physical plant, who is?”

Ms. Powerco:  “The plant manager.  You’d have to call him to find out what the problem is.”

Me:  “But I don’t have the plant phone number -- I have *this* number.  Don’t you think it would be helpful if you and the others who answer the outages line called the plant when the feeders go down so you could provide some actual answers to the people who call?”

Ms. Powerco:  (Hangs up on me) *CLICK*

Ah, customer service, Virgin Islands style.  There’s nothing like it anywhere.

How Dare You

Addendum (March 25, 2010):  Since writing this post, it was discovered that the person I knew as Mark, about whom this was written, was nothing more than a figment of the imagination of a woman who feigned having ALS for the purpose of getting attention and sympathy.  "Mark" is apparently not her first fictional identity, nor do I believe he will be her last.

Despite the discovery that the entire scenario described below and character at the center of it are fictional, the outrage I expressed is real, so I've decided to let this entry stand.

For more about the revelation that there is no Mark, please read my follow-up post: Butte Münsch, or How Dare You, Part Two

---

There is a doctor in Butte, Montana, who’d better thank whatever god he prays to that he’s several thousand miles away from me, because he is now a marked man.  This doctor, supposedly a practitioner of the healing arts who swore an oath to “first, do no harm“, decided earlier this week that it was time for one of the loveliest, most vibrant men I have ever known, and one whom I’m truly honored to call my friend, to die.  To make the effort to prolong my friend’s life, he implied, would be “a waste of resources.”

To quote Eric Cartman, “I.Am.So,Pissed.Off.Right.Now.”

All the doctor knows of my friend Mark is that he was admitted to the hospital unconscious with raging fever from an undetermined infection, and that he has Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig’s disease.  ALS is a progressive disease that robs its victims of their ability to move, to speak, to eat, and to breathe on their own.  There is no cure, nor is there a treatment that can halt the progression of ALS.  It is a fatal condition. 

The fact that Mark is in the advanced stages of ALS was all this doctor needed to know before he told my friend’s family that it wasn’t worth the effort to try to treat him and try to save his life because, in the eyes of the doctor, Mark doesn’t any semblance of a life worth saving.

It didn’t matter to this this doctor that Mark is an incredibly witty, smart, engaging man who thinks, dreams, lights up a room with his presence, loves and is loved.  The doctor judged the value of Mark’s life by what his body could not do, and found him wanting.

It’s not the first time I’ve encountered this attitude from medical professionals -- it’s something anyone with a disability will face, to one degree or another, at some point in their life.  It’s happened to me -- the worst example was when a DNR notation was slipped into my hospital chart even though no one ever discussed the subject with me.

But familiarity with this attitude that we are somehow less deserving of the best care available because our bodies are damaged in some way doesn’t ease the blow when it happens.  It’s a kick to the gut to be reminded that others, especially those charged with managing your care, have already decided that your life is so inferior that you’d really be better off dead.

But it doesn’t make me sad when this happens.  It makes me angry.

So, Dr. Butte, you are on my list of those who will be the first up against the wall when the revolution comes.  And as the blindfold is tied around your eyes, you will hear my voice asking how dare you decide who is and isn’t worthy of saving?  How dare you pass judgment about the quality of a life, or the contributions someone adds to the world, based only on their physical being?  How dare you decide someone should be left to die without ever knowing anything of who that person is?

How dare you decide that my friend Mark was worthy of anything less than the best you had to offer?

How dare you.

Post Script -- Thanks to the advocacy and tireless efforts of his wonderful family, Mark regained consciousness.  The first thing he did after waking was crack a joke.  I hope the last thing he does before leaving the hospital is to rip Dr. Butte a new one, provided there’s anything left of the “good” doctor after Mark’s sister is finished with him.

How Do They Do It?

I’ve been reading a lot of new blogs lately.  For reasons it doesn’t take Freud to figure out, I’ve long been obsessed with all things medical, and lately I’ve been getting my fix through the blogs of ER doctors and nurses.  Besides the similarity in subject matter, I’ve noticed another trend among these bloggers: more than half of them are posting more than 400 entries a year.

How do they do it?

These are people with full-time jobs.  And not just full-time jobs, but hectic, full-time jobs -- the kind that keep you on your feet the entire time you’re there, where lunch and bathroom breaks are rare.  Many have families and, if they’re not embellishing their profiles, lead active lives outside of the time they spend in the ER.  How do they manage to compose and upload more than a blog post per day when I -- unencumbered by either employment, bi-ped children, or a life outside of my house -- have to work at making a dozen posts a month?

There’s an old adage that says if you need to get something done, delegate it to someone who’s busy.  Perhaps it’s the same with blogging -- those who have the least amount of free time are the best at keeping their blogs up-to-date.

Maybe it’s because they have more to write about than I do.  They go to interesting and challenging jobs every day where they talk to coworkers and patients and their families.  My gimpy body, on the other hand, keeps me trapped at home, talking mostly to the HipHubby, the cats, and random strangers on the Internet.

It couldn’t hurt that they have two fully functioning hands with which to type, and brains (presumably) free from the fog caused by narcotic and antispasmodic medications.  I was once a clear headed, two-handed typist, and I can tell you that combination of assets greatly speeds up one’s ability to string together a series of coherent thoughts and put them in writing.

So wait -- am I really saying that the reason these other bloggers are able to publish more than one entry a day and I’m not is because they’re vibrant, clear-headed, able-bodied professionals and I’m an addle-brained, housebound gimp with no life?

Maybe some questions are better left unanswered.

I’ve Had it With…(A Collection of Mini-Rants)

…my bowels. (Nothing like starting with way too much information.)  People with spinal cord damage have to devote way too much time to making sure their bowels behave.  After a long period of trial and error, I’d finally found a perfect formula for pooing -- a delicate balance of fiber and water, probiotics, stool softeners and prunes was working brilliantly for me.  And then I started taking a new med that causes constipation, and suddenly I’m back to square one.  No one should have to spend so much time and energy on shit.

…seeing my beloved HipHubby in pain.  His back is fried because he has to help haul my dysfunctional body and heavy wheelchair all over the place.  We’re having a hell of a time trying to get him pan relief because there are so many drug seekers out there claiming back pain, and because doctors just don’t/won’t understand that taking a one hour class on proper lifting techniques won’t relieve his back spasms or help us determine if there are alternatives to the way we currently do transfers, etc. that might be less damaging to his well-being.  It kills me to see him in pain 24/7 and know I am the cause behind it.

…people who complain of being in unbearable pain who claim they’ve tried *everything* when they haven’t.  It’s getting harder and harder to hold my tongue when people go on and on in one breath about how out of control their pain levels are, and in the next tell you that they’re “just not ready to”  or “don’t want to” try opioids, or can’t take X drug because it causes an annoying side effect that they don’t like.  Seriously, if you’re really hurting that bad, you’ll be willing to try anything, or put up with the dry mouth/constipation/drowsiness some meds cause, to get even a modicum of relief from the pain. 

…the Water and Power Authority of the US Virgin Islands.  This last week, we had SEVEN power outages in four days.  SEVEN.  Thankfully, they were mostly short-lived, but there’s no reason at all the electricity should be going out that many times on bright sunny days, especially since we pay so much for the power we do get.

…people who really believe that the reason other people don’t like them is because “they’re just jealous.”  That goes double for those who think others are out to get them because they’re so beautiful.  It‘s not jealousy -- people genuinely don‘t like you, probably because you’re obnoxious in some way.  Stop relying on the self-esteem preserving excuse your Mommy used to protect her precious baby’s ego and start taking a long, hard look at yourself to find out just what it is that makes you so unlikable to so many people.  Everyone will be better for it.

…six episode cable TV seasons.  It’s annoying when a show airs its season finale the month after its season premiere, then disappears off the broadcast schedule for 10-12 months.

…writer’s block.  I have so much to say -- why the heck can’t I think of any of it when I sit down at my keyboard?

…the Medicare Prescription Drug Plan donut hole.  For those who aren’t familiar with it, this little bit of public policy BS is a gap in prescription drug benefits that requires people on Medicare to pay ~$4600 out of pocket in drug costs before catastrophic drug coverage kicks in.  I burn through my initial benefits and fall into the donut hole by mid-March, when I have to cough up close to $1700/month for my medications.  ($1100 of that pays for just two prescriptions, the OxyContin I take for pain, and Advair, which I just started on again after three good years without it after my breathing took a turn for the worse last month.)

…not being able to sleep.  I’m so tired all of the time anymore it’s ridiculous.

Please Release Me, Let Me Go

No, this isn’t a tribute to the old Eddy Arnold/Jim Reeves song that I can still sing by heart after hearing my Mom play it over and over when I was growing up.  This is a plea to the invisible python that’s coiled itself around my midsection and is slowly, but persistently, crushing my organs and making my already difficult struggle to breathe all but impossible.

The name of the reptilian constrictor is the MS Hug.  Despite its name, this evil beast doesn’t limit its prey to people with multiple sclerosis -- it can strike anyone with spinal cord damage.  It attacks without warning by constricting the band of muscles near the bottom of the rib cage and hanging on, sometimes for days and even weeks at a time.  It’s strong and relentless, and so far undeterred by the numerous attempts I’ve made to rid myself of its painful presence and prevent it from ever hunting me down again.

I’d already had some breathing problems earlier today -- after laying on my side for an hour to try and get some sleep, my lungs filled with gunk, making me rattle and wheeze with each breath -- so the arrival of this evil python was even less welcome than usual.  The Hug attacked right after I sat up, making it seem as though it had been patiently laying in wait for me, ready to strike as soon as its target was exposed.  In a matter of minutes, it was tightly coiled around my body and giving no indication that it had any intention of releasing me from its death grip any time soon.

My ability to comfort ably breathe isn’t the only casualty of a Hug attack.  By causing my abdominal and back muscles to become rigid, this monster also impedes my ability to move myself around.  It’s not as though I have the greatest range of motion in my torso on my best days -- my spinal column is fused solid from the base of my skull down to the middle of my chest, which means I can’t bend or flex my upper body above my waist at all.  It looks and feels like I’m wearing a neck brace and body cast.  The Hug makes me feel as though there’s an actual snake wrapped around me, its thick body physically impairing me from bending at the waist.  Even someone with full strength in and control f their arms and legs would be hard-pressed to move about if they couldn’t bend or twist their torso, so you can imagine how difficult it becomes for someone like me who has almost no use of her legs and extremely limited strength in her arms.

I’ve tried just about everything I can think of to force this tenacious predator to release me from its grip, but nothing has brought me any relief.   It’s unfazed by heat and cold, immune to drugs, and unaffected by physical intervention.  It’s as strong-willed and single-minded as I am, and only it will determine the moment when it’s had enough and is ready to move on to its next victim.

Until then, I wait, my breathing shallow and my body stiff, waiting for the morning when I wake to find that this insidious beast has finally let me go and returned control of my body and breath to me as quickly and unexpectedly as it stole them away.

Post Script:  I swear I wrote an entry about the MS Hug in the earlier days of this blog.  But even though I can see it clear as day in my head -- there was a picture on the Michelin Man in it near the bottom of the page on the right -- I can’t locate the post here on the blog or anywhere in my original documents.  If anyone else remembers that essay, please leave a comment and let me know that I haven’t totally lost my mind.