Wednesday, April 28, 2010

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

Monday, April 19, 2010

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.

Thursday, April 15, 2010

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 consomm√© 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.

Tuesday, April 13, 2010

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.

Wednesday, April 07, 2010

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.

Friday, April 02, 2010

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.

PeepsIt 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.