Says Who??

Verstehen, through shared perspectives


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I CHOOSE…..

Death, shadowy lifelong companion

So familiar, so often close as to be almost

A visible presence;

Sometimes longed for,

Too long not feared.

 

But in the darkest night of death’s lurking essence:

“Do you want to be healed?”

Jesus asks the cripple at the poolside.

Do you want to be healed?

The words echo in my heart,

Reverberate in my soul.

 

And again:

Do you want to be healed?

I find it hard to say yes!

The Spectre is close to me,

Promising an end to the pain, to the loneliness

Cessation of the everlasting demand to measure up

To life’s demands, to the expectations of others.

Life has been too long, and I am so weary.

 

Do you want to be healed?

The words won’t go away.

I doubt that I have a choice.

What will be, will be. Right?

Death is close. Accept the inevitable. Go gracefully.

But—“Do you want to be healed?”

Dare I say yes?

 

What if it is a hoax—a lie offered by a brain

Too old, too confused, too shattered by pain?

“What have you got to lose?” the challenged brain responds.

“Choose Life!”

I don’t think I really have that choice, I respond.

Besides, to choose life means to once again pick up

All those burdens, all those challenges.

The ones known are bad enough;

What about the unknown suffering that might come?

Can I bear it?

 

“Choose Life!”

No longer imperative, now seductive.

“Think of all that tomorrow brings of joys, and blessings!

Would you not love to see what happens?

Would you not enjoy the adrenaline rush of a new challenge?

Would you not treasure the companionship of new friends?”

 

Yes, but—what about the ever worsening pain?

What about the continued failings of an aging body and brain?

What about…..

“Choose Life!”

This time the words come encased in humor, then laughter.

I think I am beginning to understand.

 

To be healed IS to choose life,

But it is not defined by the healing of a worn-out, diseased body,

“What we are is God’s Gift to us, What we Become is Our Gift to God,”

I have written.

Winston Churchill said “Success is never final; failure is never fatal. It is courage that counts.”

 

Perhaps God is not finished with me yet, even though I feel finished with me.

And just perhaps, another day, another year, even another decade

May find me laughing at Death’s scary faces and threats

While walking with the confidence of Gratitude

For a life wherein I have been, as C.S. Lewis states:

“Surprised by Joy.”

 

Even in the pain, the possibility of making a contribution may be real;

Even in the fear, the possibility of Joy may be real.

If I choose Life, the possibility of Life may be real.

 

I choose life.

 

Hopejpm82114


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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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BLESSED ARE THE CAREGIVERS….REALLY!!!

I cherish the caregivers in my life:

A family member who would drop everything a week before Christmas and fly hundreds of miles to be by my side when I undergo a difficult medical procedure;

 The physicians who might dread to see me coming (but nevertheless try everything in their power to help me) because first of all, I have severe chronic pain, and second because I cannot tolerate most of the medications that would provide me enough relief to cope;

 The pastors and fellow members of my church who comfort me, get me back and forth to medical procedures when I cannot drive myself, and hold me up in prayer;

 The pharmacist who takes the time to go over my medications with me to try to discover which ones are interacting in ways that increase my problems;

 The employer who knows of my disability and my age, yet values my skills enough to hire me anyway;

 Friends near and far throughout the world who immediately respond to any hint of a problem with their words of comfort and care;

…..and this is only part of a long list that comes to mind today. There have been so many in my life through the years, and even now there are so many others.

I cherish these all the more because through the actions of many legislative bodies and a large percentage of law enforcement agencies, many perfectly legitimate physicians and other medical personnel who care for those who daily suffer chronic pain are being targeted, their patients ostracized, labeled “drug seekers” and/or hypochondriacs, and malingerers. Physicians who try to help me and other patients in pain are labeled “pill mill operators” even though they do nothing to break any laws whatsoever, yet in some places they face threats of incarceration, even death.

I am neither ignorant (unknowing) or unteachable. I have graduate degrees in four disciplines. Before retirement I was a full professor, and for seven years the vice president for academic affairs/academic dean of a college. I have lived and worked in another country, and traveled to many places on this planet. Before all that, as a nurse in a county jail I regularly came into contact with drug and alcohol addicts, dealers, and both straight and “dirty” law enforcement officers.

I have also been subjected to chronic illness and chronic pain since the age of 4 years, and have often been confined to bed, once for a period of two years. As a former nurse, and as a member of a family whose history and present lives include chronic illness and chronic pain, I am also one who fully understands the freely given sacrifices made by those who care for people who are too ill to care for themselves. Although people in pain often feel isolated and alone, the truth is that their pain affects a large network of caregivers who support them in many ways.

I am convinced that it is therefore also long past time for us as a nation to be educated about the differences between addiction (a disease of the brain that can only be managed, not cured), medication dependence (I depend on a medication when I need it, and my body may need to be carefully weaned off when I no longer need it), and tolerance (over time I may need more of that medication because my body learns to tolerate it—this, too can be carefully managed).

Bottom line: Opiates are consumed as a source of pleasure to illegal drug users and addicts, and used as a source of income to their dealers from all walks of life. For the former group, opiates ultimately decrease the quality of life. But opiates are also a source of life-sustaining relief to patients in pain, and when that pain is chronic rather than acute, the correct management of opiates may allow relief enough for the patient to cope and to have an improved quality of life.

We need to understand the difference, and not add to the problems of legitimate pain patients and their caregivers.

If anyone can understand the difference between illegal drug activities and the care of patients who require medical assistance at least to survive and perhaps be productive citizens, I am one who can, because of my own experiences and education.  I have been fortunate, despite being unable to tolerate medication, to have received enough support and alternative treatments to lead a productive life.

Chronic pain, untreated, destroys life. Brain research studies show deterioration in brain function where chronic disease goes untreated. That deterioration is very similar to the effects of taking too much medication, and in part also to that of addiction. Through all of this, families and other caregivers also suffer, along with the patient. Much is required of them, and it may also be difficult for them to cope. But they do it, day after day, year after year. This is my way of saying thanks to my caregivers now and through the years.

What we who share this situation ask of you is to proclaim one day: March 20th, the first day of spring, to honor the dedication and love shown by these heroes. To honor those who willingly give of themselves and their resources to make life possible—even bearable—for those who daily suffer in pain.

During the month of September we celebrated National Pain Awareness Month. Let’s now look forward to the end of the long winter months when pain and the difficulties involved with treating it seem so much worse. Let us have a day of new hope, of renewal and light in the former darkness of cold and pain. Most of all, a day to support those who give their lives to support others.

March 20th, 2015. The first National Pain Caregiver’s Day.

Please join us!

 


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FEAR

I admitted to no fears.

I depended only on myself; trusted only myself.

It may have been said about me that

Fools rush in where angels fear to tread.

But I was no fool—or so I thought.

 

I did not expect much from life

So when abundance of life was given to me

I was deliriously happy, savoring each day

And each moment.

Until that became more and more difficult to do.

 

Described by one as “rabidly independent,”

I did not have to risk facing the pain that others suffered:

…abandonment

…betrayal

…loss (if it can’t be replaced, I probably don’t need it)

Even though practicing this meant giving up intimacy, trust and companionship.

 

I justified elimination of those elements by telling myself

I had already suffered these, and survived.

I don’t have to do this again.

I can live without them.

I am not afraid.

 

And then I experienced FEAR.  I was afraid.

Deeply, paralyzingly, mind-numbingly afraid.

The deepest betrayal of all had happened

And allowed fear into my life.

I had been betrayed by my own body, my own mind.

 

I could no longer take care of myself.

My mind no longer submitted to my bidding, my body knew nothing but pain.

I prayed for death, but it did not come.

I would not implement my own demise–

Not out of courage, but out of fear.

Not fear of death, but fear of coming face to face with a

Creator who had not summoned me, had not released me

From realizing my worst fears.

 

For it was now that I learned that I was not fearless at all,

I had simply managed to avoid those things I feared.

Now that Fear had been allowed

I found myself trembling with all kinds of fears.

 

Almost daily I had to face things I had never consciously feared before,

But now I did fear them.

Regularly, I was challenged by fear of things I had heretofore managed to avoid

So as not to admit my fears.

But I no longer trusted myself.

 

Friends stood by me, encouraged me, cared for me.

Physicians patiently addressed my symptoms, diseases and pain

Until I began a long journey back to manageable pain, manageable chronic illness.

My body restored to a state with which I could cope,

My mind began to function again.

 

I dared to share my fears with another, who touched my heart with care and said

Don’t fret. It will be OK.

I dared to believe.

I dared to trust.

 

I have today, and I can deal with it.

I am not dominated by fear of tomorrow, just as I truly have never feared death.

It is inevitable. It just is.

I will deal with tomorrow, tomorrow.

Sufficient unto the day is the evil thereof.


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WOUNDED SPIRITS

My life journey has taken me to the new world. I have accepted this new world, my new reality.  I am going to do my very best to be a productive and healthy person in this new reality.  BUT – WHO IS THIS NEW PERSON?   And how do I understand the new “normal” for this person?

We have good reason to ask “What is normal?”   We go through our days in the midst of family, community, nation and world having some idea of what to expect from those around us.   That is, until some monumental event shakes up our world and our expectations and we are forced to accommodate a new reality. Even when we are merely the observers, adjustments must be made that vary in the degree of their intensity according to our degree of attachment to the former situation.

We watch a documentary recording the life of a wounded warrior, struggling to make sense of his changed body and mind and find new meaning in his life. We are touched, reminded of our own frailty, and perhaps even determined to engage in some effort to assist the many such members of our society. But what if that warrior is my spouse, parent, or sibling? The change in my own life must accommodate the changes in the life of the warrior in many ways. There is a grieving process that must take second place to the need to care for the wounded loved one, and to learn how to maximize the benefits of our new life together. The changes are emotional, physical, and social. They are economic. They are time consuming, demanding, and often frustrating. The family, individually and as a unit, must “reinvent” itself to achieve a new wholeness. For too many, this is like putting Humpty Dumpty together again. The fractured selves are unable to withstand the challenges, and wholeness becomes elusive.

In all of the outwardly evident necessity for communal adjustment, the psyche of the wounded themselves may require more support than the medical and family community is able to provide. Patients are subject to unwritten rules and expectations that include: 1) A willingness to get well; 2) Compliance with medical treatment and with family expectations of same; 3) A positive attitude about life and their new place in it; and 4) They should not suffer too loudly, or too often. There is more, but of course each wounded person and each family will be both unique and yet have much in common with others in similar situations. Each person within the family unit also brings their own personality to the situation, for better or worse. But what about the wounded warrior him- or herself?

At this point, let us enlarge our wounded warrior status to include, as we have, members of the family and community. These are wounded warriors whose injuries did not occur on the battlefield, and whose wounds may not be visible. Yet individually, they share much in common. There are also others: The stroke survivor. The cancer patient. Those who have lost limbs, or have lost mobility due to accidents or disease processes. Those who have given all that they have in their vocations, or to their families or community, and have simply burned out. Those who struggle with addiction. The point I am getting to is that while we may understand and sympathize with the outwardly evident wounds of these pain warriors, we understand too little of the inward journey they are making. The physical needs, including the social environment, are so great that the patient is often left to figure out on their own how to be a whole person within, having lost so much of the external evidence of wholeness. If we address this at all, we tend to say (as I already have) they are “reinventing” themselves, which may be a problematic term.

Some commonalities exist: With physical loss, there may have been an event where the patient was in one place when it occurred, and returned to consciousness in a completely different and possibly strange place, already both physically and mentally changed. Or, disease processes may over time become too overwhelming for both body and mind, and there is a loss of ability, loss of productivity, loss of independence, loss of financial status, loss of mental acuity—too many losses to support the former persona. Too many losses to grieve, to accept, to overcome easily in the effort to restore a sense of self, of worthiness, of place in a different world.

Some wounded never return to us as independent, self-sufficient persons. Depending on the degree of injury to both body and mind, they may daily suffer a constant state of mental and/or physical pain that precludes outward focus. But many do return to some degree of personhood and productivity, and it is these who may be most painfully subjected to society’s rules for patients as outlined above. As the ability to cope increases, so do the expectations of society, family, and medical caretakers. The huge problem of “Who am I going to be, now that I have lost who I always used to be?” remains unrecognized, and if actually voiced, bulldozed over by the well-meaning advice that boils down to GOIAMO.   Get over it, and move on.

It is not that easy. Yes, I have completed the grieving process. Yes, I have accepted that this is my new world, my new reality. Yes, I am going to do my very best to be a productive and healthy person in this new reality. BUT – WHO IS THIS NEW PERSON?

The emphasis on “new” comes from the phrase “reinventing one’s self.” That can appear as a completely overwhelming task for the recently wounded soul. And it is a task that for the most part begins alone. Later, as the self becomes more certain, relationships with others of varying significance will be vital to the restoration process. First, however, there is that incredibly lonely, often painful, often frighteningly introspective search. And at first, it is likely to be a search backwards “for the self that I used to be.”

That focus in the past is healing, but eventually may be stunting to the growth process. It is healing, in that common, continuous threads of the personality and the life of the patient become evident. I am not completely new, after all. There is much of my personality that is still usable and strong. But retrospection becomes stunting when the focus remains lost in the past, and the wounded one begins once again to grieve for what has been lost.

In the end, if we persevere, we begin to focus on the future, and what we will bring to it. That is all that is really unpredictably new, and in reality, it always has been. It may not be the future we have intended, and for some of us that is truly an entirely new concept and challenge. More of us, though, have had to live and adjust to Plans B, C and even D already in our lives, and have the experience to make this latest adjustment. We just may have bigger hurdles to jump in order to do that.

Whether the life changing wounds are our own, or those of a loved one, the change is both an outward and inward journey. It might help if we adjusted our expectations of how people should react to their woundedness, and how we should react to our own woundedness. In either case we need to make room for potential wholeness in a changed future.


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TO LIVE, AGAIN

In earlier blogs I have shared my 45 year journey with chronic pain, increasing disability, and finally reaching the point where pain and disability were not always compatible with the will to survive. I have also written of the recent procedures that have relieved that pain enough for me to cope, and to begin to pick up the unraveled threads of living; to once again look beyond the immediate desperation of losing control of my life and to see, and feel, the enticement of a world that had somehow managed to retain its fascinations even when I was not paying attention. I joked with friends that I now knew how Lazarus might have felt, when Jesus brought him back to life. What a thrill it has been!

You would think that by my seventh decade of life I would have learned that one cannot stay on the mountain-top experiences of life. The journey continues; there are valleys to plunge into, rivers to struggle across, and then more mountains to climb.

Even so, I was completely unprepared for the news I was given two days ago. I have acquired yet another chronic disease process that is not only difficult to deal with, but also extremely expensive. Because of my intolerance for so many medications, there is only one that will provide any relief at all. It won’t cure, only relieve for brief periods. It costs $173 for about a month’s supply. Medicare doesn’t cover it, and neither will my Schedule D coverage. I live on social security, and this is not the only medication that I have to pay for myself. As my doctor pointed out, sometimes those valley experiences are less like rolling downhill and more like falling off a cliff.

I was immediately faced with the commitment I had made with a former colleague to take the following day, yesterday, and travel about an hour out of the city to spend an afternoon with two other of our former colleagues. We had all worked together at my former college, but over the past six or seven years had made separate decisions that eventually brought us all within reach of each other again. Only I was now unprepared for the challenge. First, it would be my first major trip in over a year. Up until my “restoration,” driving within a four-mile radius had been my limit. Second, my new self-confidence seemed to have disappeared, along with my new joy of living. Why should I impose my doom and gloom on my old friends!

I considered my options. I could call and beg off – that was nothing new. I have had to do that so often in the past couple of years. Then, instead of enjoying the comfort of conversation and shared memories with old friends, I could stay at home with the dubious comfort of self-pity, letting the fears of the past roll into the fears for the future. I could choose, in other words, to be miserable.

So what if I chose instead to be, if not happy, at least to be content? And what was there to be content about? Well, for starters, I still had the freedom once again to move about. I actually could drive away from the safety of my four-mile limit, and see what the world outside the city looked like. And I could enjoy a much-needed day with old friends, just as we had planned.

So I did. And it was magnificent. I don’t recall the scenery ever having been so peaceful, and lovely. I had forgotten the exhilarating sense of adventure that is fueled by the idea of “road trip.” Best of all, I was once again enfolded in the rich satisfaction of being with old friends, sharing good food and better memories. I was so glad that I had chosen to be happy.

Coming back to life has its challenges, as well as its joys. Old ways of coping with day to day living may have to be relearned after years of coping with pain and desperation, and serving the egocentric needs of being a patient. Worse, it is not a perfect world that you come back to. Much needs to be corrected, to be fought for. Much needs to be protected, and treasured.

Please, Lord, remind me to change what things I can change; to accept those things that I cannot change; and most important – to know the difference. And to be content.


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Drs. Pohl and Kolodny, I Have Questions About Addiction, Dependency, and Drug Abuse

USA Today recently published an article about seniors and prescription drugs, with input from Dr. Mel Pohl and Dr. Andrew Kolodny to support the claims made in their opinion piece. (See: Seniors and Prescription Drugs: As Misuse Rises, So Does the Toll http://www.usatoday.com/story/news/nation/2014/05/20/seniors-addiction-prescription-drugs-painkillers/9277489/ ) Having read the article, I am left with several unanswered questions. I am herein addressing them to you, Dr. Pohl and Dr. Kolodny.

 In the video, the statement is made “We didn’t know what addiction was” but you never define addiction – nor for that matter, do you ever acknowledge how addiction differs from dependency, or even from drug abuse.  Addiction is a primary, chronic disease of brain reward, motivation, memory and related circuitry. The disease of addiction is a chronic condition that, without treatment, is progressive and can result in lifelong disability or death. The evidence from recent research on this is growing daily, and so is the evidence that treating chronic pain patients based on this information is increasing the success rates—success rates that you also fail to acknowledge.

Drug dependency, on the other hand, is reversible. Anyone can expect to become physically dependent on a drug they take for a long time; including, for example, diabetic medication, anti-anxiety drugs, sleeping pills, nasal sprays, beta blockers and other cardiac drugs, and many OTC drugs that are NOT prescription medications.  Withdrawal from dependency can be severe, but when it is over it is over. In contrast, the disease of addiction is a chronic condition that, without treatment, is progressive and can result in lifelong disability or death. 

Drug abuse describes behavior born of bad decision-making; not the disease of addiction. Almost all addicts have been physically dependent on drugs, but vastly fewer people who find themselves “physically dependent” on drugs (i.e. pain patients) are addicts.  When assessing your data on seniors who survived their youthful drug excesses in the 60’s, for example, did you consider this?

Also, did you consider that these same seniors know how to obtain street drugs and will do so if the option of pain control is removed?  Are you willing to share the responsibility of leaving your patients no choice but to engage in criminal behavior? Are you unable to acknowledge the reality that there are expert and courageous physicians who are willing to engage in the time-consuming (and, in the media fabricated maelstrom of opioid hysteria, even dangerous) battle for suffering patients against chronic pain? Will you ever acknowledge their successes?  Why do you bombastically lump all these conditions under the most alarming category of addiction?

Thoughtful physicians are taught to begin with the lowest dose, monitor their patients, and increase the dosage only as objective and subjective findings justify the increase. Why then, Doctor Kolodny, have you begun your treatment of this issue at the highest possible dosage of inflammatory rhetoric? Don’t you understand that each patient differs in their perception of pain, in their tolerance for pain, and in their response to medication and treatment?

And finally, you object to prescription opioid pain treatment but support the use of Tylenol (i.e. Acetaminophen) in patients with severe chronic pain.  Have you read the research on what acetaminophen does to the human liver? Doctor, have YOU ever experienced severe chronic pain with only acetaminophen for treatment?

The flaws and gaps in your ivory tower presentation are glaringly obvious.  You have failed to convince me that the best prevention for addiction is to never prescribe these drugs.  In some pain-free utopia that approach might work.  But we live, suffer, and die in the real world. Neither you, nor I, nor anyone will ever establish heaven on earth by banning pain drugs.

Why not treat this problem like you are supposed to treat pain. Let’s start with a remedy that has the greatest potential for benefit with the least amount of risk: 

Let’s educate ourselves about the proper use of these medications, the best treatments for pain, and the value of lifestyle optimization.

Perhaps my suggestion also sounds like a utopian prescription.  I am not naïve enough to believe you can eradicate abuse and addiction merely by educating the populous.  But it’s a better primary treatment for our drug problem than surgically removing all access to opioid pain care.  And 116 million chronic pain patients would not have to choose whether to suffer or become criminals.

Note:  I have shamelessly borrowed from the published research on this subject.  The information is out there. 

Chronic Pain Management with Opioids in Patients with Past or Current Substance Abuse Problems. Journal of Pharmacy Practice. 2003, 16;4:291-308.