Chronic Pain: Living What I Did Not Know

On March 13, 2013, a needle stab or two during oral surgery triggered chronic neuropathic pain, which involves my entire mouth and, on its worst days, my lips, nose, and palate. It is called burning mouth syndrome, a misery I would wish on no one.

I’ve spent the years since then trying to cope with life as a person with chronic pain, trying every medication and complementary treatment my doctor and specialists recommended. As Dr. Victor Montori told me–before I myself became a patient–patients have to complete many tasks, and work to regain health. Doctors must consider what else patients have to achieve while conducting the work of being ill.

Nothing ever really helps–or what sometimes helps causes short-term memory loss–and I’ve been forced to adapt to living with a condition that has upended my life. I’ve also developed several autoimmune diseases, which come and go and flare and vanish, a perplexing mix of symptoms and treatments.

Much irony in this, learning to live with multiple chronic conditions as I age. It’s a topic I’ve written about for many years, especially when writing about how to help frail elders and their caregivers. The issues sometimes seemed intractable, and the solutions often appeared to be simple.

I have since learned how tough all of it can be. In December, I agreed to participate in a new patient-centered medical home (PCMH) project. I signed on with relief, for I could no longer manage the dozen or so medications prescribed by seven different providers–none of whom interacted with the others! Even now, when a clinical pharmacist finally completed her review of my medications, with an eye for spotting any that might be discontinued, I have yet to see her recommendations.

It is not that I have not asked–but that her recommendations were apparently faxed to my primary care provider, who then faxed them to my care coordinator, who concluded that I should not see them until my next appointment with the PCP. Meanwhile, agitated specialists have called me to warn that someone has been calling them to suggest changes to my medications!

Whew! Health information technology (HIT)? Not there–the area’s clinicians have chosen HIT vendors whose programs suit the practice’s needs. This means that they might not connect with the records stored by other clinicians, or the hospital, or the diagnostic tests. I am still responsible for trying to convey the complexity of it all to each clinician, and hope that the independent pharmacist who fills some prescriptions (other than those required by my medical insurance to be called in for maintenance supplies) spots potential adverse effects or interactions.

When I voiced these concerns to my care manager, she noted, “Well, you are a highly educated person who is knowledgeable about what should happen. This [program] is still a work in progress, and it will require many tweaks.”

Tweaks? I’m tweaked! What about those whose health literacy is less sophisticated? I’ve found my own sophistication to be no match for the alternatives clinicians suggest to me. Often, I guess–do I like the sound of the medication? Have I seen it on direct-to-consumer ads? Have I tried it before? What do others think of it?

It seems a foolish and expensive way to make such critical healthcare decisions, yet off I go on this road less travelled. Please take some time to follow me for a while, as I chronicle the next few months–and the work I accomplish.

 

Key Words: chronic pain, pain, autoimmune disorders, care coordination, patient-centered, health literacy

Life Is a Discotheque: Dance, Whatever They Play

I had gone to bed early last Mother’s Day, exhausted by the energy I’d spent trying to cope with a recently acquired chronic pain syndrome. Sleep had become my friend and my remedy, a respite from the burning pain of a nerve injury.

Dance

I was halfway to sleep when my 11-year-old came in my room and laid down beside me, facedown in the pillows, head nestled against my elbow. I could tell from a shudder in his shoulders that he was crying.

When I asked what was wrong, he said, “Who would shoot people on Mother’s Day? Who?”  Via social media, he had seen news of a shooting rampage: 19 injured during a New Orleans Mother’s Day parade.

“I’m not going to go to Philadelphia on Friday,” he said. Philadelphia was the destination for his fifth-grade class trip, something for which they had prepared all spring. A coach bus! The Liberty Bell! Money for trinkets and lunch! A day with friends!

“You’ll be fine,” I said, slowly coming back to the world and the reality of his pain—the psychic pain to which all of our children are exposed these days, when violence erupts so constantly, so nearby.

“I’m not going,” he said. “I’m just not.”

I rifled through my maternal stash of platitudes and reassurance, and finally decided that the best advice of all has been circulating for months now, courtesy of Mr. Rogers and what his mother told him: When bad things happen, she said, look for the helpers. They will always be there.

I riffed on that, telling my son that the world is, in fact, more good than bad, and that we live among people who are more good than bad. Each day, we encounter them: teachers and day care workers, cafeteria ladies and crossing guards, hospital workers on the night shift and firefighters, paramedics, physicians and nurses, pharmacists.

We live among people who feed the hungry, shelter the homeless, comfort the sad, and care for the sick and the dying. Our lives are touched by the imagination and creativity of people who explore the universe and the earth, who look for cures for disease and disability, who build our schools and homes and hospitals, who protect our borders. We are enriched by people who create art, literature, music, film, theater, and culture.

It is true that, as my son puts it, some people have dark hearts. Indeed, their dark hearts can make the world dangerous and frightening place. They people our nightmares as they disrupt and destroy lives. Some days, it seems, they out-maneuver us—they implement any number of weapons aimed to destroy, cripple, and overpower others.

Yet no matter how much they try to defeat us, we mostly end up still standing. We emerge from the dust and the dark, the bullets and the chaos, and we fashion our lives and move forward.

The dark-hearted ones may take over the headlines on CNN—but they cannot take over our thoughts and how we choose to live each day.

I did not say all of this to him. Instead, I held him closer, and told him the short version—that the world is mostly a good place and, for most of us, life is a rich experience. We have good days, and not-so-good days.

In the midst of learning to live with my own pain, I have focused on keeping up with work. I thought about a recent cab trip across town. It was a rainy day, and I complained about that to the cabbie.

“Any day you wake up is a good day!” he said. As we drove down Washington’s Pennsylvania Avenue, he told me about his life: conscripted in the Eritrean military at the age of 15, the war-time deaths of both of his parents, the war in which he himself was badly injured.

Through it all, he said, he remembered his father’s advice: If you are alive, it is a good day. It may be a challenging day, but there is no such thing as a bad day. As the cabbie put it, “Life is like a discotheque. You need to dance, no matter what music you hear.”

So that’s what I told my son: How important it will be as he grows up to dance—with and despite the music, to find a place within and around it.

Living afraid is no life, and worry gets us nowhere.

Posted originally, October 9, 2013, by www.mariashriver.com: http://mariashriver.com/blog/2013/10/dance-no-matter-what-music-you-hear-janice-lynch-schuster/

Image credit: ancagray on Etsy