March Pain Blog Carnival is Up

Please check out this issue of the Pain Blog Carnival - the best postings of the month about dealing with pain. some are personal stories; some are scientific. I am pleased that my post on a game I played with my pain is included.

How Do You Start Your Day?

I used to start my day by doing an inventory of pain signals. When the pain began to behave itself, I would mentally rehearse how I would handle the more anxiety-ridden encounters I expected to have during the day. It was as if I believed that careful anticipation could either better prepare me, or magically prevent the feared outcome.

I think I had become so worn out by my many battles with pain, who was often the victor, that I forgot how to trust both myself and the universe. Ironically preparing for tension only made me more tense and less able to ride the curves of the day.

Over the years, as my pain grew more muted, I became more thankful and confident. As Einstein once said, "There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle." I picked a third way -- some things really suck; but even so, it's important to take time to stop and eat the roses.

This may sound hokey, but now I start my day by saying (not sure to whom): "Thank you for this beautiful day in this beautiful world and for enabling me to participate in it."

It doesn't matter if it's hailing golf balls or if my pain is beginning its insidious climb to level 7 . I now have proof that it will eventually stop hailing and that the pain spike will retreat. I find that my new morning saying points the intention for the day in a positive direction and offers me a quiet pause, one clean breath of appreciation before I greet the "miracles" of the day.

How do you start your day?

A Chronic Pain Game

When I was a child, my girl-friends and I would play a game we called "Senses." We each had to pick one of the five senses we thought we could live without.

Most often, smell was the sense that we decided could be disappeared with little consequence. It was unthinkable to lose sight. Without hearing we wouldn't be able to listen to the Beatles. Without taste, we wouldn't be able to enjoy ice cream. Losing touch was incomprehensible. So we usually opted for smell.

Not a particularly compelling game, I admit. No prizes or victories involved. Just a familiar conversation that rolled over the same terrain and landed at the same finish line each time.

I think we used it as a way of lightly touching something truly alarming without risking serious consequences. Like passing your finger quickly though the flame of a burning candle. We converted something horrible into a game we could control, and thereby magically turned what might be fate into a free choice.

Fast forward four decades.

When I finally realized that my chronic pain was not casual and would not go away despite my doctors' best efforts and my many prayers and tears, I panicked. Richard (my sweetie) and I began hunting down medical specialists and alternative practitioners. Sometimes I had 4 or 5 appointments a week.

It was during this period of frenzied activity that I began to resurrect the Senses game, but with a twist. This time instead of asking, "What sense could I live without?" I asked myself, "Which would I rather have -- this physical pain or severe depression?" "Pain or lung cancer?" "Pain or dementia?" "Pain or macular degeneration?"

More often than not, especially if I was in the thick of a hammering pain episode, I preferred to be stricken with the other disease. But the important thing this game offered me was a way to insert a mental space between me and the pain. This game, like Senses, positioned pain as a choice, not a fate.

Not that I could just choose to not be in pain. I tried that..... a lot. It never worked. But, if I could place pain in a context of choice , I was moving pain outside of my body, for just a moment. I was contemplating pain rather than being pain.

I know this is getting kind of existential - the difference between being pain and having pain. But pain had taken over not just my body, but my every thought and breath. When I wasn't in pain, I anticipated being in pain. This game placed pain and me in a different kind of relationship. I was apart from pain, making judgments about it.

To drive this tiny, imaginary, even foolish wedge between me and pain was a start. From there, over time, I began to imagine even greater distances between us. I began to meditate and focused on condensing pain into a smaller and smaller ball. I concentrated on my feet or hands, places pain never reached. I imagined healing waves of blue water flowing though my body, carry bits of pain away with each new surge.

The more distance I could put between me and pain, the more I felt that my life was returning to me.

Grand Round is Up at Polite Dissent

Polite Dissent, a very cool blog about comics, politics, and medicine (an interesting combination), is hosting this week's Grand Rounds. I am very pleased that my post about the cost of health care for couples retiring was included. Have a look.

Retiree Couples Need $225,000 for Health Costs

Business Week article:

U.S. Retiree Couples Need $225,000 for Health Costs

"Another report suggesting that Americans need to set aside a large chunk of cash to cover health costs during retirement was released by Boston-based Fidelity Investments.

It concluded that a couple (both partners age 65) retiring this year will need about $225,000 in savings to cover medical costs for the remainder of their lives, the Associated Press reported. That's an increase of 4.7 percent from Fidelity's $215,000 estimate for a couple retiring in 2007.

The Fidelity figure is based on the assumption that workers don't have employer-sponsored retiree health coverage. The figure includes Medicare premium payments, co-payments, and deductibles, as well as out-of-pocket prescription drug expenses.

"With health care costs continuing to outpace wage increases and companies trimming retiree health benefits, financing health care has to be central to retirement planning," Brad Kimler, executive vice president of Fidelity's benefits consulting group, said in a prepared statement, the AP reported.

Last month, the Center for Retirement Research at Boston College released a report that estimated a couple retiring this year would need about $206,000 for health care coverage."

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Musings:

How many retiring couples have this kind of money set aside for health care? Certainly not the 47 million Americans who have no health insurance. Not to mention the millions more who are underinsured.

I recently saw a segment on the TV show 60 Minutes about an American relief organization that airdrops doctors and medicine into the jungles of the Amazon. It's called Remote Area Medical or "RAM" for short. However this time, RAM set up a treatment facility not in a faraway jungle but in Knoxville, Tennessee. Over the course of one day RAM saw 920 patients, made 500 pairs of glasses, did 94 mammograms, extracted 1,066 teeth and did 567 fillings. 400 people were turned away.

I think this statement by Martin Luther King, Jr. says it well:

"A nation that continues year after year to spend more money on military defense than on programs of social uplift is approaching spiritual doom."

Grand Rounds is Up at Canadian Medicine

Canadian Medicine did a great job of collecting posts that range from murder to sex to whining (or not whining). Have a look.

I am very pleased they included my post about the kind of experience you do not want to have with your doctor.

A Patient's Perspective on a First Visit with a New Doctor

Some doctors know how to connect with a patient right from the start. They not only offer excellent care, but also hope. And, unfortunately, some don't........

The first pain management clinic I went to, in June 2000, in a major urban university affiliated teaching hospital, was overcrowded and dingy. The olive walls of the waiting area contrasted harshly with the orange plastic chairs that circled the room. The thick haze of pain coming from the crowd of patients made it hard to breathe. Everywhere I tried to rest my eyes I saw clenched jaws and jiggling feet and silent tears. The crescendo of pain in that room was still rising as I was called in to see my specialist.

Dr. S. was a small woman, dressed in a lab coat that reached below her knees. She radiated a harried efficiency. She acknowledged me with a brief flash of eye contact and an accompanying head nod and then asked her resident to describe my symptoms. As he spoke the words I had given him fifteen minutes earlier, she poked at me like a fish monger checking the freshness of a slab of salmon. All the while she concentrated more on instructing her resident than on connecting with me.

She was soon ready to declare that I had a neuropathic pain syndrome and to prescribe more medication. For me, calling my pain “neuropathic” was like my dermatologist naming a rash I once had on my arm “dermatitis.” She didn’t provide any real illumination; she merely described what was, in medical language.

I had many more questions to ask her, but she kept looking at her watch and telling me we could discuss them at the follow up appointment when we would be able to discern if the medications were helping. She kept edging toward the door. I tried to lasso her in place by tossing out more questions. With a final flourish of her watch she bolted through the exit. As a parting gesture, she explained that the department administration only allotted her fifteen minutes per patient, and she had already used up her quota and any reserve minutes.

For her, I was a petri dish to which she was adding some mold to see what might grow.

Grand Rounds is Up at Chronic Babe

Please have a look. Jennie from Chronic Babe has pulled together a wonderful collection of blog postings, all on the theme of New Beginnings. I am really pleased that she chose to include my post on An Essential Question.


Also please check out my article on But You Don't Look Sick about Yoga Off the Mat.

An Essential Question

I recently read a study about the "widow effect," a curious but very real phenomenon that doctors have long been aware of. When a husband or wife dies, there's a greater likelihood that the surviving spouse will pass away soon afterward. It is not hard to imagine that when two lives have been intertwined for a long time, the surviving partner loses not only the emotional will to live, but also the daily habits of self care. For some, grief trumps survival.

However, my thoughts turned in another direction after reading this study. I thought about the "death in life" that some caretakers of partners with long term debilitating illness speak about as their world slowly shrinks to fit within the dimensions of the sick room. Caretakers I have talked to poignantly describe the impact it has when partner turns into patient and caresses get exchanged for sponge baths, lively conversation for medical updates, and future dreams for waking nightmares.

How does the caretaker not only juggle daily practicalities -- shopping, chauffeuring, working, finances, child care -- but also deal with the snarl of conflicting emotions? Cherishing the memory, hating the reality; yearning for release, fearing further deterioration; love and obligation; commitment and escape; loneliness and guilt.

When I was at my worst, housebound with my daily battle with pain, Richard (my partner and caretaker) and I, both exhausted from the struggle to carry on, would sometimes just sit together in silence . There was nothing more we could do and nothing left to be said. In silence, when the words we hurled at our fears ran dry, we could feel a connection, one that survived in a calmer universe where pain had lesser authority. For a moment, my caretaker could suspend his vigilance, and I could feel whole.

We ricocheted between this silence and frenzied, fear-saturated conversations that consisted of endless questions we kept firing into the unknown in the hope that one would reveal a promising direction. What medication should I try? What specialist should I see next - an orthopedist, an immunologist, another neurologist, a gynecologist, a uro-gynecologist? Should I try acupuncture again, or maybe massage?

One day, following one of these silent respites, we stumbled upon an essential question. We asked, "What is the most important thing we can do for each other?"

Our answers rose to the top of the emotional heap in an instant. I wanted Richard to tell me that he had faith that I would recover. He wanted me to let him know whenever I felt even the slightest relief from the pain.

This was a way to swaddle our terrible fear in love and reassurance, and quiet it, for a while. So much was beyond our control, but this we could do for each other, happily, easily. This was a new beginning for us. It made the load we each carried a little bit lighter.