Says Who??

Verstehen, through shared perspectives


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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.


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FIRST DO NO HARM

First do no harm. Immediately our minds turn to physicians when we read or hear this phrase, yet the reality of “Pill Mills” in our cities and neighborhoods is one factor fueling the present crisis of faith in our health care system for many people. We are a nation that labels and stereotypes with great abandon, and with the numbers of criminals using an MD degree to illegally provide narcotic prescriptions for the price of an office visit, the negative label on the entire pain management profession was no doubt inevitable.

I was guilty of supporting that label, myself. For sixteen years I lived in a region where in the beginning, alcohol and marijuana were the primary recreational drugs. Over the years, however, I saw many beautiful, bright and charming young people become addicted to narcotics, and the drugs became easier and easier to obtain even in that isolated part of the country. A few years back, I learned about growing numbers of pain clinics in the region, and that students were “safely” obtaining legal prescriptions for their recreational drugs. The words “pain clinic” became anathema to me.

After I retired and moved close to a city several hours from where I had worked, my back pain was so severe and disabling that my primary care physician told me he was going to refer me to a pain management physician. I was stunned, then just plain mad. “No, thanks!” I told him, and he may have understood the unspoken question “Have you lost your mind,” though I tried to hide it. It took some time for him to convince me, first that the physician in question was highly skilled in interventions like epidural nerve blocks for the pain, and second that he was completely legal. Even so, I did not hesitate to inform said pain management specialist that I did not need his services except for the epidurals.

I like to think that I am a fairly open-minded person, and six months later (and in much better health largely as a result of the care received from my pain management physician) I am now a patient in the pain management clinic, where my physical intolerance of narcotics and other medications is taken in stride. That is to say, I finally remembered my sociological training (to say nothing of my own teaching on the subject) and realized that no matter what my experience was in my former place of work, it did not come close to describing an entire branch of medical expertise and practice.

First, do no harm. But physicians are not the only group that should make decisions with this caveat in mind. I, for one, had to accept that the caveat applied to me, as well. How much harm did I commit in my righteous indignation over the felonious pill mills? I hope not as much as our legislators and law enforcers have done by tarring innocent physicians and patients with the stereotypical labels of pill pushers and drug seekers.

Legislators can bring about costly changes in the way that laws are made and enforced, resulting in potential harm to many people. The current “war” on opioids is a prime example.

Lawmakers are subject to pressures from the press, from their financial supporters, and their colleagues. Faced with the need to satisfy so many groups with vested interests, to first do no harm often seems to be the farthest thing from these officials’ minds. However, a few states have passed legislation designed to protect both patients with chronic pain and the physicians who prescribe for them. Indiana is one such state.

In 2012, an Indiana Senate committee introduced a bill that would become IN SB246. The final version of this bill http://www.in.gov/legislative/bills/2013/SB/SB0246.2.html was passed in 2013, based on advice from a panel that included physicians and the Medical Licensing Board.   The Medical Licensing Board then enacted an Emergency Rule effective on December 15, 2013 http://www.IN.gov/mlb . The Emergency Rule established standards and protocols for physicians who prescribe controlled substances for the treatment of pain.

You will note in reading the rules that there is a clear separation between medical license regulations, and activities termed felonious that must be prosecuted. The law covers the latter category only, and leaves control of errors in staying within the bounds of regulations to the proper authority: the Medical Licensing Board. This is precisely where many other state, local and federal government bodies have gone overboard, causing unnecessary pain and grief – even loss of life—to innocent persons by including professional regulations with actual laws. As a result, people have been needlessly targeted – “profiled,” to be exact—as living outside the law. People such as respectable physicians, living within the law, as well as persons who have been non-addicted, chronic pain sufferers, trying to manage their suffering “just enough to cope,” to remain productive. All have suffered needless, devastating, harm.

To some, the Indiana Emergency Rule seems very strict. However, given the reality of drug abuse, illegal drug trafficking, accidental and purposeful suicides using opioids, and the growing number of people misusing a medical degree to set up “pill mills,” I choose to defer to the wisdom of the Indiana Senate and the advisory committee that worked with them. I believe they tried to first do no harm. In actuality, the Emergency Rule does not prevent physicians from prescribing opioids for chronic pain patients. Both physicians and chronic pain patients are protected when both groups stay within the parameters of this legislation. Anxiety over the new rules should be lessened as prescribers become familiar with the details.

If we are to be successful in striking the balance between battling drug abuse and providing effective pain care, we must begin with education, followed with continuous reassessment of the results of our words, our laws, and our practice of medicine. Succumbing to the hysteria currently surrounding the prescription of opioids for pain care will take away the hope that chronic pain sufferers might find pain relief “enough to cope.” This will propagate a great deal of harm to millions of our fellow citizens. Laws that lead to the arrest of compassionate physicians, who are genuinely attempting to help their patients, create a situation in which great harm could befall upon innocents.

Thanks are due to those state legislative groups who have not bowed to the hysteria that would ban these pain relievers. Thank you, Indiana Senate, for thoughtfully drawing up a law that does not harm the citizens of our state. We can only pray that other states will follow your example; perhaps even improve upon it. As long as they also…

First, do no harm.