Appreciating IS in the Midst of Chronic Disease

What an absolute delight to learn that Dr. Carlo V Caballero shared my writing on his Rheumatology 2.0 journal.  Dr. Caballero is president of PANLAR (Panamerican League of Assoc. of Remautology).  Thrilling to see greater communication between the physicians who treat us and patients who live chronic conditions.
There is a soft breeze drifting through morning light, a dove fluttering by, the industry of traffic humming in the distance, and an insistent woodpecker hammers out his intent.  There is the man of smiling brown eyes I found so long ago, and his gently hilarious approach to life.  There is the good cheer and by necessity, calm industry of my tall son who has learned to live with what could be perceived as a limiting condition.  There is the friendship of my son and his bride across the way, who share creative pursuits and forward goals, while contending with the onset of disease. There is the love of my daughter and her bridegroom, a few mountain ranges away, living creatively in different sunshine.  There is the knowledge that this daughter is stepping down from tall mountains today, choosing to live fully in the face of what could be only debilitating disease.  There is the story of the friend who helped her reach the second mountain peak. There is the story of old friends who remind me of who I have been, and new friends living similar conditions, who remind me who I can be.  There are unspoken words of wonder, and the shifting mystery I find in studying Tibetan Buddhism. There is the wonder of gazing skyward at night, of looking forward to winter evening walks under a sparkling velvet canopy. There is the at once cautious and bold doe who steps out of our woods, watching us watching her, glancing back for her fawn.
Sleepless nights and difficult mornings followed by trying hours can easily dictate the chronic condition.  I prefer to appreciate the IS.
There is the simple act of kindness that touches another soul. There is laughter shared, truths exchanged.  There is the possibility of possibility. Always.  There is IS.

National Pain Strategy: The Opioid Crisis Truth

Page through a magazine, and you see the ads: gaunt, defeated faces of those destroyed by addiction. Rheumatology patients look much the same when pain is poorly controlled.

Given our family history in the trenches of autoimmune arthritis, I was asked to support, and blog about the National Pain Strategy (NPS) petition.  Well, I never take things at face value, so I decided a little investigative journalism was warranted.  I am in no way affiliated with the NPS, and opinions contained within are my own.

There are brilliant tools for pain management in the National Pain Strategy, and it is a thing of beauty to see acknowledgement of attitudes, biases, and patient stereotypes as barriers to treatment. On the surface, this seems a reasonable and broad-based approach to caring for patients in chronic pain.  In reality and practice, rheumatology patients are now bearing the undue burden of cautionary care.

Everywhere I turn, there is another news story hammering the Opioid Crisis.  At what point did chronic pain become criminal?  The NPS data focuses on drug abuse, yet most articles about the Opioid Crisis imply negative stereotypes for patients managing chronic pain. So often there is an assumption that patients with chronic pain do not pursue a holistic approach.  If I relied solely on my opioid for pain management, I would be miserable, depressed, and would suffer significant loss of motion. My use of meditation, yoga, walking, clean eating, and creativity is self-prescribed — with unlimited refills.
We’ve been lead to believe we have a champion in our fight for functionality. Instead, implementation of the National Pain Strategy is a bit of a sales job.  I recall Marge Simpson’s lesson in the fine art of sales:

 

“There’s the truth (shaking head), and THE TRUTH (big grin).”

Autoimmune arthritis patients are being lumped into this crisis purely by association with necessary treatment.  It feels as though we are under assault by legislation, medical personnel, the media, and society.  Truth is, we must hedge against ourselves in treating our unceasing chronic pain.  Each prescription bottle of opioids is a Hedge Fund:  balancing each day’s productivity against future physical activity vs current dosage and disease progression.

Despite the NPS acknowledgement that “74-96% of chronic pain patients use their prescriptions without suffering from opioid addiction,” rheumatology patients are suddenly hitting roadblocks in acquiring opioids to facilitate life.  Not existence, but life.
Earlier this year, my rheumatologist moved across the country.  I wrongly assumed his diagnosis and plan of management would carry over.  After reviewing my lab results, and a brief, clothed exam, my new rheumatologist declares my disease is under control.  Ah, thank the heavens!  I responded that my labs looked the same the day I was diagnosed with Seronegative Rheumatoid Arthritis.

She responded by reducing my opioid dosage by 60%.   And just for glee, my body decided to view all NSAIDs as allergens nine years ago.  The body was done with these, finis.  Try selling an NSAID allergy to a new physician.  I am most fortunate that my previous rheumatologist documented my reaction as a severe allergy.

The mission of the National Pain Strategy (full draft here) is a brilliant and reasonable collusion of physicians, researchers, and patient input. Yet somewhere between brilliance and reality, autoimmune arthritis patients are suffering.  We are forced to ration our pain relief.  In real terms, this means rationing our functionality as productive humans — both physical and mental activity is hampered.   People who have never experienced the pain of autoimmune arthritis cannot grasp the distraction of unrelenting systemic pain.

I’ve been puzzled at the sudden focus on this Opioid Crisis, and mused at all of the other public crises we could declare.  I looked into the sudden escalation of opioid prescription abuse, and it seems my hunch is shared:

Bob Twillman, executive director of the American Academy of Pain Management said the “new initiative is a fine idea,” but he’s more concerned with how the National Center for Health Statistics (NCHS) reported its data this year.
“It appears to me that illegally-manufactured fentanyl is being lumped in with legal prescription opioids, accounting for the apparently huge one-year increase in prescription opioid-related overdose deaths.”  He added: “I’m very concerned that this inappropriate lumping (assuming that is what is happening) could result in even greater pressure on opioid prescribing, further increasing the access problems we’ve been hearing so much about.” – Arlotta, CJ. White House: Opioid And Heroin Overdoses Are On The Rise (Contributor) Forbes.

I have to ask, what is the motive of declaring a crisis?  The bipartisan Comprehensive Addiction and Recovery Act (CARA) was signed into law 22 July 2016.  The act authorizes $181 million in new funding each year, which must be funded annually through appropriation.

In general, the mission of the National Pain Strategy is a brilliant and reasonable collusion of physicians, policy makers, researchers, and patient input.  Still, I have to ask:  who profits in the Opioid Crisis?  Clearly not the autoimmune arthritis patient.

We are on the front lines of a war in which our immune systems fired the first shot.