Says Who??

Verstehen, through shared perspectives


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IT WAS AN EPIPHANY

 

Derived from the Greek word epiphaneia, epiphany means “appearance,” or “manifestation.” In literary terms, an epiphany is that moment in the story where a character achieves realization, awareness, or a feeling of knowledge, after which events are seen through the prism of this new light….*

 dreamer

 

If you have read any of these posts in the past, or followed me on social media sites, the topic of this blog undoubtedly presents as a drastic departure from my usual chronic pain patient advocacy, and even more so from my general political observations. In fact, perhaps it seems too esoteric for a sociologist to even think about, much less write a public blog on the topic.   Psychology, chronic pain, and the mind-body connection nevertheless are all familiar territory in pain management literature, and the numbers of really good approaches to these problems are legion.   Yet their true value becomes lost in the fog of the inevitable watered-down versions that we end up producing in our collective need to simplify the complex and package it for quick sale. Epiphany, as a necessary element of both healing and evolving human processes, is a concept that while accepted as part of the break-through of successful science as well as of evolving spirituality, is not often explored for its own sake.  Whether it becomes part of the pain management lexicon, I can only pray that it does not do so at the cost of its complexity and authenticity.

To be clear, I have had little choice in accepting the reality of epiphany as a healing event. What you will read, if you continue here, is the process that I have experienced, and which I now believe vital to the understanding and proper management of chronic pain (both physical and emotional, which seem to be deeply intertwined). That was definitely not the position I would have taken as recently as a year ago. In fact, this is pretty deep stuff for me to think about, much less write about. I am not trying to drown myself or the reader in the depths of this topic, or in the murky waters of my own, very long, life which has been accompanied all the way by pain in various manifestations. My recent personal epiphany has led me to first accept, then to firmly believe, that the mind-body connection cannot be ruled out as an invaluable—even necessary—prerequisite for understanding the role of chronic pain in the lives of many patients. And that it may necessarily include the experience of an epiphany of some kind.

I believe the psychologist’s role in mending the mind-body connection is vital to wholeness for the chronic pain patient whether the pain is barely managed, or has been controlled “enough to cope.” Does that make sense? I inquired of my favorite pain management physician. “Yes it does,” he promptly replied. But even now as I begin to dive into the narrative explanation of my experience, I strongly resist the idea of any psychological protocol that has been watered down into a one-size-fits-all process for pain management. It would be no more useful than a one-pain-medication protocol would be suitable for every patient. Chronic pain patients are unique individuals worth the time and effort spent, working with the cooperation of the patient, to achieve the wholeness and productivity uniquely suited to that individual—spiritually, emotionally, and physically.

So, getting to the point, an epiphany can be all that we commonly accept as a liminal** moment in time when we stand in the dangerous threshold places that are holy, or liminal.  It can also be simply a flash of understanding that may change the way we look at things, or simply allow us to move on in a very this-worldly fashion, without much in the way of miracles to play a part in the proceedings. Or, it may heal a broken spirit and allow normal light to return to a life. This was my recent experience of epiphany.

I would never have called it an epiphany, yet it is due to the wisdom and patience of my psychologist that the spiritual and psychological environment for this very liminal event could ever even have taken place. To clarify, my psychologist is not a pain management therapist, nor is he associated with any pain management  group,  but I was referred to him because of my pain.  Through two years of working together with him on the mind-body connections of my chronic pain, it was becoming more and more clear to me that I often described myself as “who I was” (in survivalist mode) during periods of physical and emotional abuse; and “who I was” after having removed myself from all connections to those times.

During about a decade immediately following the achievement of my freedom, my anger was so deep—almost primal—that I acted on that anger and the cynicism associated with it most of the time. Until I could no longer live like that. From somewhere, I found my survival depended more on having a better understanding of my worth as a human being than to accept that version of the “new me.” The behavior ended, but the anger remained and deepened. And I hated it. And sometimes, myself.

But the anger was also motivating. I went to University in my 40’s, received my PhD, lived in South Africa for seven years, and came back to the States “a different person.” So I described myself, anyway. The anger was still with me, like a two-ton vehicle attached to my back. I thought of it as the vehicle that kept me alive, that got me where I needed to be. But actually, I carried the “vehicle.” And it was heavy, and it caused me a great deal of physical and emotional pain. The pain alone finally nearly destroyed me, and at the age of 72 I finally gave up on life, death seemingly imminent. I had the satisfaction, I thought, of having overcome the person I had been, to achieving something in life that had real meaning to me. I no longer behaved as “that other woman” behaved, but still there was the pain. Still, there was the anger.

Anger at God? Probably, but more like confusion. How could the God I had experienced as a real and positive presence in my life since childhood be the same God that allowed me to be abused and violated, to suffer deep and painful losses right up to that very year I retired—how could that be the same God to Whom I could honestly give the credit for “leading me all the way?”   For that matter, how could the person I am now be the person I was then? I would never discuss her, or even think about her if I could help it. That part of my life was more and more a void. I hated who she had BEEN, and felt relieved that I had “left her behind.” Except, of course, for the pain. Except for the anger.

By now, my therapist had earned my complete trust and with deep respect for my privacy, had still managed to elicit some valuable understanding of who I thought I used to be, and why. Then came the day of The Epiphany. I had been listening to “Jesus led me all the way” in the car on the way to the session, and my newfound road to freedom from deep angers was being threatened. My psychologist must have sensed the time had come, because in our subsequent conversation my confusion about how God could have been leading me in those dark, anger-filled years finally made sense. Don’t get me wrong. I made the decisions, and I alone used the anger from previous helplessness to get me through some situations I probably didn’t need to be in, in the first place. I don’t claim God made me suffer, but at that specific moment I saw that He used my suffering, my bitterness, and my losses to lead me to a better place. That was how He led me “all the way.”

Hard on the heels of that epiphany came the certainty that the new understanding being true, every experience, every “version” of who I was at different times of my life, thus were all about the same, ongoing story about the same, greatly blessed (and yes, greatly misused) human being. Paradoxically, the person that I denied as part of myself has shown me how much I need her cooperation in order to continue to follow a purposeful life; how much I need her forgiveness in order to forgive those who hurt me; how much I need her experience of the worst in human beings in order to try to make some sense of the world we live in today and avoid giving up in despair.

I call that a real epiphany. Both the dangerous, liminal kind, and the blessed, healing kind.

In common usage, it has been my understanding that an epiphany is an “Aha!” moment at the very least; more likely a “Eureka!” moment, in which (to borrow from James Joyce) the radiant object becomes a surreal, even a sacred thing (or idea, or experience). In religious terms we might think of Saul of Tarsus being blinded by the Epiphany (of the manifestation of Jesus), after which he, his life and his purpose were completely changed. We think of him bathed in the magnificent presence of the Christ during that moment too radiant for mere mortal eyes to bear. For some, the idea of epiphany embodies that sacredness and is not expected to happen to ordinary folk like you and me.

For most of us, we may think of an epiphany in the terms of “Aha” or “Eureka,” but still as something contained within the ordinary living of our day to day lives. We are not blinded, our lives may shift a bit one way or another, but we continue to use our same names and, while some changes in our lives or lifestyles may occur, we remain essentially who we were. We struggle for hours, even days, with a problem we just can’t get our minds around. Suddenly something clicks in our minds and everything falls into place. The answer is obvious. We have experienced an epiphany, and it was a good thing. It was a positive occurrence, after which we might say “Why did I not see that before?” The implication being that we discovered it ourselves, it was not given by divine intervention, did not occur at a liminal threshhold. Or did it?

And, finally, do I now need to spend time trying to understand the unexplainable, or would it be more useful to incorporate the results of that experience into a life that has achieved continuity, meaning, and potential as a whole tapestry? A tapestry that reveals both beauty and ugliness, both mystery and clear understanding, both light and dark. A tapestry as yet unfinished, in which the ongoing presence of the Weaver may continue His work.

Looking at that tapestry, I can only believe: The Best is Yet to come.

Thanks for listening.

 

 

NOTES:

*https://literarydevices.net/epiphany

 **Liminal: a psychological, neurological, or metaphysical subjective, conscious state of being on the “threshold” of or between two different existential planes, as defined in neurological psychology (a “liminal state”) and in the anthropological theories of ritual. www.askdefine.com

 

DEDICATED WITH LOVE TO THOSE WHO SHARE THE EXPERIENCE OF

 CHRONIC PAIN;

TO THOSE WHO AS FAMILY AND FRIENDS

HAVE WALKED WITH ME IN JOY AND IN PAIN;

AND

ESPECIALLY TO

JAMES PATRICK MURPHY, MD

AND

DENNIS E. WAGNER, Ed.D,

WHO SEE AND TREAT ME AS AN INDIVIDUAL PATIENT,

WITH THE RIGHT TO MY UNIQUE EXPERIENCE OF PAIN.

AND FINALLY AND FOREVER,

TO HE WHO “LED ME, ALL THE WAY.”

 

hands, heart


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BREAKING THE CYCLE OF PAIN: THE CHRONIC PAIN SUPPORT GROUP

cpsg flyer 4.11                  Last year, as you might have read in previous blogs, I worked in a Pain Management Center. My favorite times at the Center were when I was calling the patients between their appointments, to make sure they were doing OK and find out if there was anything they needed from us before their next appointment. Some were not doing well for various life experience reasons and needed an earlier appointment. Others were having trouble with obtaining their medications from their pharmacy and needed us to work with them to locate a more reliable place to obtain their medications. Still others had questions about various issues of living with chronic pain in a less than supportive political environment and a health insurance economy that does not guarantee that a patient will be able to afford the medication that they need.

But the patients that stay in my heart the most are those who lived alone, those who were themselves their only caretakers, and those who struggled the most with their pain. Their misery resulted from the entire gamut of problems from cancer to rheumatoid arthritis, from low back pain to pain in every joint in their bodies, and more. But that was only the pain. There was, added to this insult to the body and mind, the trauma to the soul. I heard how they were not believed when they tried to relate their stories; how no one wanted to listen to how they felt because “They heard it so many times already.” I heard how they missed doing the things we all took for granted, such as; going out to eat or to a party or a concert, cleaning their homes the way they liked for them to be, or working full time and earning a living that included enough money to pay for the extra needs in life. Even worse was the fear associated with brain fog and confusion and the ultimate threat of not being able to stay in their own homes. The increasing loss of choices in their lives was worst of all.

I, of course, could relate. This week I read an article from KevinMD, entitled “Seven Reasons Why Being in Pain is a Pain,” by Franklin Warsh, MD, MPH. It was not so much an eye-opener for me as it was a message to my soul. Here, finally, I heard a medical professional unburden himself of the true awfulness of chronic pain, how it takes over every facet of one’s life, and how it makes the patient fight for every ounce of joy they may be able to experience. Some of what he said echoed the voices of patients who had shared their stories with me. Much of what he said was also about things I knew our Pain Center patients would not necessarily voice to anyone. Some were things I also often experience, but would never tell anyone because I was not sure they were not the result of some flaw of my own—some insufficiency of my DNA, or my character, or my failure to be a better person in some way. Dr. Warsh was able to take the shame out of chronic pain. By sharing (naming) the common symptoms and losses accompanying chronic pain, he defused the stigma we assign to ourselves for having pain.

I am not saying everyone suffers all of these things he mentions, because all chronic pain patients are unique in their experience of pain, their response to pain, and what works for them to ease that pain. Some can take medications with a lot of success; others cannot tolerate medications and have to seek other means to alleviate their pain. And there are many other ways—ways that, like medication, may be more or less effective for any given patient. But that extended discussion is for another blog. This blog post is about a means of dealing with chronic pain that I believe to be one of the most important, based on my own experience and the experiences that of some of our patients have related to me. The experience is that of  Joining a chronic pain support group.

Recently some of my professional friends and I agreed that a Pain Support Group that was open to all chronic pain patients was a necessity for our area. We decided it should be free to the public, approved by relevant medical and psychological professionals, and not intended for political advocacy but rather would be a community of accepting, active listeners who are willing to care for one another and meet together for learning and sharing. That group has begun to take shape, and the next meeting will be on April 11th of 2018 at 4:00 pm. We meet in St. Paul’s Episcopal Church Education Wing at the corner of Market and Walnut Streets in Jeffersonville IN.

This group is intentionally meant to be a means of healing through our sharing, rather than advocacy. We are definitely not opposed to advocacy and know that it has its own role in healing. But it is often difficult for people in severe pain to commit themselves to such active work. As one patient has said very poignantly, “Why, when I finally have something I really need and want to advocate for, am I least able to do it?” On the other hand, if you already belong to an advocacy group and would like to join us as well, you would be very welcome.

I have the privilege of being the facilitator, or moderator, of this group. My professional life as a nurse/sociologist has been based on working with groups to facilitate the process or goals of the specific group. We do not work on what my personal agenda might be, but what we all agree we want the agenda to be. The caveats I have mentioned above concerning advocacy and sharing are the basics agreed upon by the professionals who participated in our discussions when we formulated the group, along with the co-pastors of the church who have donated the space for us to meet each month. From that opening point, we worked together to create the process of finding healing within ourselves and each other.

The links for the article by Dr. Warsh, as well as an article written by Dr. James P. Murphy about the group, are below. I invite you to read them and to think about what we might be able to accomplish together for and with others, and please meet with us on April 11th or any second Wednesday of the month at St. Paul’s. We need you, and if you are seriously considering this, you probably need us.

      breaking cycle of pain

 The Family of Pain is a Club Nobody wants to join, 

But Isolation is Worse.   –Lynn Webster, MD

  

Resources

Murphy, James P. “A Letter in Support of a Support Group” March 25, 2018 https://jamespmurphymd.com/2018/03/25/a-letter-in-support-of-a-support-group/

Warsh, Franklin “Seven Reasons Why Being in Pain is a Pain” in KevinMD, Dec. 27, 2017 https://www.kevinmd.com/blog/2017/12/7-reasons-pain-pain.html

Webster, Lynn “Family of Pain is a Club Nobody Wants to Join, but Isolation is Worse.” http://thepainfultruthbook.com/2018/03/family-of-pain/

 


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RESPONSE TO DR. JEFFREY FUDIN’S REQUEST

In Dr. Fudin’s post today, comPASSION Fatigue https://t.co/rilJGgQxFG , he defines Compassion Fatigue as “essentially a form of burnout common to those of us who actually care.” He and his co-author explain the problems of advocating for good care for chronic pain patients while navigating the endless stream of misinformation, outright lies, overreaching legislation and its advocates, and the inability to understand the differences between the illnesses of substance addiction, and the suffering of chronic pain patients. “[W]e continue as a society unable to hold two thoughts in our heads, the suffering of the addict now that rules the day and the suffering of the pain patient has been relegated to a bottom dweller,” the article states.

Since most fail to listen to anyone they do not agree with, and no one seems to care about truth in advertising, chronic pain advocates and their physicians (and pharmacists) grow disillusioned and weary of the task. I urge the reader to use the link above to read this very relevant article, where the authors make a much more articulate argument for the case than I have made here, as well as reporting important new information.

However, it is not my intention to simply report on the article or its excellence. The authors realistically ask a very relevant question: Is anyone out there still playing the game? Are we still actively advocating for chronic pain patients? My answer is difficult to write.

Having been an undertreated chronic pain patient for well over 40 years, as well as a nurse in a county jail who worked with police, substance abuse addicts, and drug dealers, I believe my claim to a broad understanding of the situation to be credible. I am also well trained in both statistical and qualitative research as a result of my graduate degrees. Yet I am repeatedly called out as ignorant, as a probable drug seeker, or as simply being wrong about everything. I do have pretty thick skin, having been an academic dean for several years, and while friends compliment me on my ability to persevere, my parents called it “stubbornness.” But so far, it has served me well.

Again, I hate to quit, or to give up on a good cause. But at my age I have learned to pick my battles. I have only so much energy, thanks to my years of pain and the many disease processes that have resulted from that pain.

At the same time, that last sentence explains exactly why I have chosen THIS battle, and I will not give up or shut up. You may not see me in writing as often, because I am tired and ill much of the time. But I will write, and I will talk, and I am definitely still in the game—just benched to rest a little more often. I am far from being alone in this situation, and I no more want to see hundreds of thousands of others suffer than I wish to suffer myself.

Meanwhile, here is a thanks to Dr. Jeff, and to all the compassionate pain management physicians (especially mineJ) who stay in the game despite all the prejudice, dishonesty and even the honest ignorance and misunderstanding that muddies the waters and stains our souls. Then too, the devastation of the lives ruined and lost unnecessarily because of undertreated or ignored pain, and the new rhetoric that is based on the notion that we are all alike and our pain should be treated the same, accordingly. And let us not forget to acknowledge those compassionate physicians who have lost so much after being targeted and charged by federal agents with no accountability for their actions when they were wrong.

I am beginning to ramble, so I end with this statement: The pain of burnout and the pain of disability cannot end this battle. It is too easy already for many to forget or deny the reality of our existence. Our voices must continue to compel the truth into being.

Talmud quote


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THE SOUL’S MUSIC RESTORED

 

scenic pianoHuman beings have a wonderful gift that I firmly believe connects our spiritual nature to the source of its being. The ability to create beautiful sounds from our own throats, to use our brains to compose melodies and harmonies that become operas, concertos, requiems, ballets, and marches; to combine our voices in the multiple harmonies and rhythms of the choir, accompanied by instruments we have invented for that purpose, is beyond comprehension. The results are so pleasing to us that whether for a free concert or when having to pay a large price for tickets, we will gather together to enjoy this gift that speaks to our souls as a community, or we will listen to recordings by ourselves as we bask in the restoration and pleasure of the experience.

Many of us are drawn to a particular genre of music that has a greater capacity for energizing, calming, or healing that is special to our unique self. Maybe it has the ability to do all of this; perhaps it also becomes a comforting presence to the person who is alone with their joy, sorrow, or just with their thoughts. In any case, those for whom music is a vital part of their life enjoy a profound relationship with it, even if they only have the ability to listen with all their hearts and cannot produce the music itself.

For me, music has always been important. I am almost transported to a higher plane of being when listening to classical music, my favorite—especially to classical piano. Having played several instruments when I was younger, including piano, organ, violin and alto clarinet, I often found myself fingering the notes of a particularly moving or thunderous passage—sometimes even waving my arms in the fashion of a conductor as my entire body listened to, and was moved by, the music. Until it was not.

It has been more than twenty years since I could bear to listen to the classics. Listening to the music was not something I did passively; it could not be background for other activity. I had to stop and concentrate, to listen with my entire body and soul. The music demanded it. So as I grew older, and the disease processes that create my chronic pain grew worse and required all my energy to cope, I no longer had the ability to listen to the classics—especially the piano. It actually hurt, because those pathways of pleasure were now overcome by pathways of pain and illness. Instead of soothing, the music irritated inflamed nerves.

pain photo

 In my previous articles, however, one could follow the wonderful restoration of my ability to function physically under the dedicated care of a pain management physician. I have even regained the ability to work part time, and to function quite normally in taking care of myself. I have often remarked that my brain is not what it used to be, but I was beginning to feel more like myself. This has been an amazing journey; one that continually filled me with awe and gratitude for being given a second chance to live a productive life unbound by severe chronic pain.piano keys

In fact, in the past few weeks I have become aware of an additional blessing. I find myself, more and more often, listening to classical music and especially to classical piano. It has now even taken the place of the less demanding substitutes that occasionally accompanied my drive to work. I am able to listen at home now, giving the music my entire attention.   In other words, I am once again able to listen to “my” music with my body and soul, and to experience the healing and restoration, the uplifting resonances and the calming adagios that exemplify the genre.

I am so very grateful to the physician who continues to serve those with chronic pain despite the cultural unpopularity of that service, and who kept working with me until I regained my ability and determination to live. As a special and additional blessing, I now feel as though a missing piece of my soul has been restored by “my” music, and I am finally, wholly myself once more. And more than ever, I believe that music is one gift given to us that connects us spiritually with the source of our being,  and I again experience the connection, in gratitude.


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“ALTERNATIVE” VS. “SUPPLEMENTAL” PAIN CARE

The latest heresy propagated by the misguided War on Drugs, particularly the version that is an opiophobic war against pain patients and their physicians, is that engendered by both pop and professional psychology. In short, it is the claim that to control one’s own pain by controlling thought processes is a better alternative than pain medication for chronic pain. Thus, mental self-control is added to physical therapy, diet, and exercise, as purveyors of these so-called better methods hope to gain the income they saw going to legitimate, board certified pain management physicians who actually provide relief from pain. The heresy is that theirs is an alternative therapy, when in fact for far too many chronic pain patients it is at best a supplement to actual pain relief by medical methods.

Before addressing this heresy, allow me to outline my credentials for debunking it. For 46 years I have suffered from degenerative disc disease. At the present time, there is no part of my spine unaffected by this process, no part that fails to add to the pain. At four different places in my back and neck, there are outgrowths (stenosis, protruding disc material, arthritis and one spinal meningioma) intruding on the spinal cord itself, with resulting radicular pain, weakness in extremities, and the potential for paralysis. In addition, 14 years ago I was diagnosed with Type II Diabetes, with severe diabetic neuropathy. Walking produces paradoxical pain and numbness, often resulting in missteps and falling if I do not actually see where my feet are.

Because I have always been unable to take pain medications (as well as many other medications), early on I accepted the responsibility for dealing with my pain pretty much on my own. To the extent possible, I considered it a “mind over matter” situation and learned to compartmentalize the pain while I worked full time all those years, was divorced and learned to support myself, gained first a nursing certification and then a Ph.D.  While these “alternatives” to pain medication made life possible up to a point, it remained very difficult and the control was as often geared toward forcing myself to keep going as it was to training my mind away from the pain.

I held positions that were demanding and stressful, often working 60-70 hours a week and rarely getting more than 3-4 hours sleep because of the pain. As both a nurse and a professional social scientist, I was knowledgeable about the supplemental psychological and physical methods I was using. But no matter how well I used distraction, being useful, loving my job, and being positive; no matter how I accepted my pain as simply another part of my life and tried to minimize its presence in my thoughts and mind, it continued taking its toll on my body and my life. THESE SUPPLEMENTAL METHODS OF PAIN CONTROL WERE INSUFFICIENT, NEITHER REMOVING MY PAIN NOR REDUCING ITS EFFECTS ON MY BODY.

Three years ago, all the defects in my efforts to control chronic pain came to a devastating but inevitable concluding failure. The discs on either side of a lower thoracic vertebra “imploded”—displacing the vertebra, and creating scoliosis from that point upward in my spine. The pain, added to what I already suffered, was too excruciating for me to fight. Additionally, other disease processes were becoming worse from the long-term stress: my diabetes was out of control, I had cardiac problems, allergies, and severe gastric issues. I retired from full time work at the age of 72, and moved to a city where I hoped to find good medical care and a church family where I would feel at home. I did not think it would be for long, and often my pain was so exquisite, so unrelenting, that I prayed for the relief of death.

That, in summary, is the story of my life without pain medication. It was a long nightmare of having to give over so much of my personal energy to keeping pain levels manageable that I had nothing left for the responsibilities of any kind of family or personal life. Pain was the constant companion of my days and nights for so many years that I had forgotten many of the pleasures of a life free of pain. Don’t get me wrong—I am not looking for the reader’s sympathy. I am simply stating facts, not just for myself, but also for the millions of chronic pain sufferers in the USA who also live with untreated or undertreated chronic pain because of unjust and unreasonable regulations about what kind of treatment and how much of it they are allowed. Regulations too often created by people without the credentials or experience to understand the “unintended consequences” of their need to control a situation that has nothing to do with legitimate pain care, and everything to do with a dysfunctional understanding of addiction.

There is obviously more to my story, and that is because my selection of this city proved to be an excellent choice. Here, I was referred to a pain management physician with the skill, compassion and integrity to not only medically provide periods of full relief from my pain, but also to help me find a pain medication that I am able to tolerate. I now know with certainty, for the first time in my life, that the so-called “alternatives” to pain medication do not qualify for the term “alternative.” They simply are NOT EQUAL to the task of relieving severe, chronic, disabling pain that takes its toll on both mind and body. They can be excellent supplemental methods for maintenance of the effects of tolerable levels of pain (which differs in EACH AND EVERY patient, as do the effects of all forms of pain management) but they are no match for the pain suffered by those of us whose lives of debilitating chronic pain are defined by pain management or the lack thereof.


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PERSPECTIVES ON PAIN CARE PROVIDERS DAY

As I write this post, the date is February 1st. When I noted the date this morning, my reaction was “Finally! February is here. What a relief!” I surprised myself. The first 28 years of my life were spent in western New York State, so I can assure you that this is not my normal reaction to the first day of February – or any other day in February, for that matter. February was always the month when Seasonal Affective Disorder (SAD) reached its peak: Gray days, dirty gray snow, cold days and colder nights, chapped skin, shoveling snow day after day – by the second month of the year the reality of winter was enough to send me into at least a minor depression.

…Until recently. Chronic pain has for years held an even greater power in my life for bringing on depression, especially after a few long months of winter weather. However, once I had become convinced that my thought patterns and beliefs could actually make my pain even worse, I decided to try an experiment. Last year, I decided that instead of suffering through the blues of February – or grays, if you prefer – I would welcome the month as a certain sign that we were on the downside of winter, and better days were ahead.

That was actually true for me in several ways last year. I did concentrate on thinking positive thoughts about February, which was no small achievement. I also met my pain management physician that month, and had two epidural procedures which alleviated my pain enough to allow me to manage several other medical problems over the following months. I didn’t think any more about my experiment until this morning, when I surprised myself by welcoming the thought of February. My perspective has certainly changed.

All this soon led me to thoughts of chronic pain, and the Pain Care Providers Day campaign. I thought how over this past year I have watched and read about chronic pain patients who have joined their voices and efforts to bringing about national awareness of the hundreds of thousands of people who exist with daily, even constant, severe chronic pain. I thought of those professionals and clinical personnel who have joined to champion the cause of those people that they care for, day in and day out. And I remembered the families, and friends, and neighbors who join in to assist people who cannot always manage on their own, and who have also supported this campaign.

As I looked back over the year, I realized that attitudes are changing. Perspectives are changing. Many people who have been victimized by both their own bodies and by unreasonable laws and regulations regarding their care have refused to be labeled victims. They have found their voices, and are speaking out, demanding to be heard and treated fairly. And they are being supported by the voices and efforts of their caretakers.

Physicians are pushing pharmaceutical companies to produce medication that will not harm their patients. Medical societies are pushing for multidisciplinary approaches to treatment for chronic pain patients that will be more effective. During the month of September 2014 we celebrated Pain Awareness Month, and more people joined the efforts to bring new resources to the treatment of chronic pain.

So now, on March 20th, 2015, we will celebrate Pain Care Providers Day (PCPD).

What is this day all about?

It is definitely NOT about drugs. It’s not even about chronic pain patients, per se. It is about celebrating the steadfast and selfless gift of presence and help by all those who have cared for us all these years when we have generally been thought of as malingerers, hypochondriacs, drug seekers, or worse.

Admittedly, we chronic pain patients are not always easy to deal with. Sometimes it is difficult to discover what has caused our pain. Sometimes we are cranky, angry, depressed, uncooperative, or downright mean. Sometimes we are hopelessly fatalistic. Sometimes we are suicidal, because the pain and isolation is winning out over any potential for loving life. Yet our caretakers and providers are still there.

But there is hope—which for many of us, is an entirely new perspective.   Awareness is happening throughout the nation, thanks to the campaigns, and more changes of perspective are taking place in unique places. Some people are actually changing their opinions about pain care providers and their patients. Of course, it takes longer for government agencies to adjust their perspectives, but with all our voices together, we can and will be heard. And those who have cared for us will still be right there, working alongside of us. And on March 20th, the first day of Spring—a day of hope—we want to celebrate their presence and work in our lives, and what it has meant for us.

 For our pain care providers, and for those who will join their ranks in future generations, I offer the following statement in support of these achievements, and these changes in perspective. It was written by Henri J. M. Nouwen, and I have borrowed it from his delightful book Bread for the Journey:

 Joy is hidden in compassion. The word compassion literally means “to suffer with.” It seems quite unlikely that suffering with another person would bring joy. Yet being with a person in pain, offering simple presence to someone in despair, sharing with a friend times of confusion and uncertainty…such experiences can bring us deep joy. Not happiness, not excitement, not great satisfaction, but the quiet joy of being there for someone else and living in deep solidarity with our brothers and sisters in this human family. Often this is a solidarity in weakness, in brokenness, in woundedness, but it leads us to the center of joy, which is sharing our humanity with others.

 

Please join us in celebrating Pain Care Providers Day on March 20th. Tell your friends and neighbors, and encourage leaders to proclaim the day. It is our day to share our humanity with others. It can be a day of joy.

justinhighrock


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WAR ON PHYSICIANS AND PATIENTS, CHAPTER 2

I wanted to believe that the State of Indiana, my new home, was a place where wise, knowledgeable heads prevailed; a place where lawmakers did not succumb to the pressures of being politically correct while morally wrong when lives were at stake. I have even twice used this blog space to compliment them on setting up a law regarding the prescribing of opioids that clearly recognized the difference between regulations and felonies, while protecting both patients and physicians.

I was wrong. The failed war on drugs has affected the State of Indiana as it has so many others, and opioid hysteria is prevailing over perspective in government circles. The law scheduled to become effective on December 31, 2014 will include limits on every form of opioid pain relief for chronic pain patients that are so restrictive as to completely ignore the uniqueness of every patient. Pain patients differ in their perspective of pain, in their experience of pain, their tolerance for pain, and their response to ANY treatment for pain—including opioids.

The treatment of chronic pain is not amenable to cookie-cutter protocols. Nor does it fit nicely into the “15 minute per patient” rule imposed as a necessity to satisfy insurance company/corporate bureaucracy requirements. It takes time, patience and extensive knowledge to successfully treat a patient with chronic pain and disability, to try to bring that patient back to some form of productive life. When this is not possible because of the extent of the disability, then the goal must be adjusted to simply making life bearable for the patient.

Indiana lawmakers once understood these facts. Now they seem to have abandoned reality and chosen to break their own law even before it takes effect. The law demands that physicians spend an almost impossible amount of time and effort being face to face with each patient before prescribing for them – yet lawmakers who never set eyes on these patients and who collectively have no medical license or even relevant training are prescribing what an allowable course of treatment can be for any pain patient. ANY pain patient, regardless of the cause of their pain, the disability it may cause, and the length of time the patient has suffered. Regardless of their tolerance for the treatment. Regardless of their response to treatment.

A physician notes:

“Regulatory overreach has a chilling effect by making prescribers fearful of jeopardizing their licenses.  This fear can result in physicians abandoning pain sufferers, even forcing some patients to seek black market medications or illicit drugs.  Such has been the unfortunate case in states that hastily passed burdensome pain regulations.  Heroin use in these states has increased dramatically as the supply of prescription pain medications has dwindled.” http://jamespmurphymd.com/2013/10/07/an-open-letter-to-the-medical-licensing-board-of-indiana/comment-page-1/#comment-1158

Just last week WHAS News (Louisville KY) reported that since the Kentucky Pain Law of 2012, Heroin overdoses rose from 3% to 40%. Heroin overdose EMS calls have risen a stunning 700%. All this, despite the fact that heroin trafficking arrests have risen 1300%. These statistics were attributed to the “unintended consequences” of the unrealistic, overly burdensome pain regulations.

Unintended consequences. Beautiful, bright college students found dead of heroin overdose. Physicians wrongly charged with felony prescribing, found dead by their own hands. Countless patients, deprived of their medications (many without even the option of being slowly weaned off of them) turning to suicide in their pain, or alternatively, to the criminal activity of street drugs.

And all we can say is “Oops! We did not intend for this to happen.” ???? Wake up, Indiana! Don’t willfully head down this same slippery slope!

The War on Drugs has failed. The War on Physicians and Patients is close to taking more lives than the Iraq war, and ruining just as many others. Simply passing harsher and more impossible laws is NOT going to help anyone. There is a better way.

Education is the better way. We have First Aid Certification, CPR, Lifeguard training and certification – so many lifesaving training programs for the general public as well as medical personnel. We need to add Basic training programs for the public on how to deal with drugs. We need Continuing Education programs for physicians and medical personnel on how to deal with opioids. Early education and continuing education can prevent deaths and disability from drug abuse, and help physicians to prescribe knowledgably. Alliances between physicians and pharmacists in drug management programs would make a huge difference in keeping legitimate patients and their caregivers safe.

Stay on the high road. Political power should be about making Americans safe, and so far the Wars on Drugs, Physicians and Patients have failed miserably in that regard. Please do not wait until that college student dead of heroin overdose is your child, or grandchild. Fight this battle WITH the physicians, not against them.