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Verstehen, through shared perspectives


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JUST ANOTHER CHRONIC PAIN PATIENT

“Me, too!”  We can all find ways to join with others who share the significant abuse, pain, loneliness, poverty…..whatever has touched us with enough significance to change the way we conduct our lives.  Our thoughts.  Our treatment of others.  Our understanding of our own worthiness, or the lack thereof.  The reality of our life that will either make us, or break us, through no fault of our own.  For over 100 million people in America, that reality is ongoing.  For some it has just begun, for others it has been the story of a lifetime of pain, and of trying to cope.  These are the chronic pain patients, and I am here to say, “Me, too.”

Elsewhere on this website I have talked about the devastating pain, and the 45-plus years I have lived with it.  About how I could not take pain medications other than NSAIDs, which ultimately caused more problems to be dealt with.  About how almost 4 years ago I went to a Pain Management physician, who made it possible for me to return from the nights spent crying in pain and helplessness, wishing for death, to a productive life once again.  Yes, along with many who have committed suicide or considered it since the War on Physicians and Pain Patients, I can say “Me, too.”  Although I cannot consider suicide (and this is no credit to me,  it is just a fact), I have certainly prayed for death to take me out of the intolerable situation.  As I said, I have written about this before.  It’s all still on line, if you need to read it.

But that is not why I write now.  There is a deeper reality to being a chronic pain patient in America, one that is emotional and psychological, and causes a pain of the inner being that is every bit as devastating as a pain level of 10 on a scale of 1 to 10.  It is why the title of this piece is “Just Another Chronic Pain Patient.”

To our government, to many insurance companies, to law enforcement and even to some medical associations and physicians, nurses and practitioners, and even to our own employers, our families, our churches and our friends, we do not exist.  When we must leave the house, we dress as well as possible, use makeup, and try to appear as though nothing is wrong with us because no one wants to hear or be reminded about our constant struggle.  It isn’t a welcome contribution to our daily interactions.  Worse, we often hear:

It’s all in your head.  See a therapist, not a doctor.

You would feel better if you would just get out and do more; exercise more; volunteer more.

Quit feeling sorry for yourself and look around you.  You are better off than most people.

If it wasn’t for you and your kind, we would not have this opioid crisis.  It all began with you drug seekers.

And these are only a few of the arrows that pierce our very souls.  Like when we are not even mentioned in discussions of how pain medication should be used.  It is all about the people with substance abuse problems, or acute, short-term pain.  These are considered legitimate issues, worthy of concern and assistance.  And they certainly are all of that, but Chronic pain does not exist, is not even worthy of notice.

Nothing is said about the courage and strength of the single mom with children to support, who bravely goes to work every day looking her best, with a big smile on her face, hiding the pain that racks her body to the point that she cannot eat properly, or sleep well at night.  And she won’t talk about it, because she knows she could lose her job, or her children, or the medications a concerned and knowledgeable physician gives her so that she can go to work and care for her children.  She lives with the fear, as well as the pain.  Every day.

Speaking of every day, other patients are condemned because they may have periods of hours or even days of less pain, when they can get a lot done, and enjoy some time free of the pain.  Those times come at a high price:  when they can no longer operate at that level of freedom, they are under suspicion of malingering.  “S/he only hurts when it suits her/him.  They just want attention/pills/time off from work..” Whatever character flaw the speaker is convinced the pain patient suffers from becomes a reality for the speaker, and the consequences of their words become, by extension, a reality for the pain patient and the source of increased feelings of worthlessness, even evil. Oh, the word evil is not spoken.  But add up all the negativity, the character flaws identified by those who have little compassion to spare for the pain patient, and to the pain patient, it feels as though others see you as something evil, at worst.  Maybe only as something unworthy of compassion and a helping hand, at best.

Is it any wonder that some of us have not been able to continue living in the face of having medications taken from us, on top of the horrible feelings engendered by knowing what society thinks of us?  Is it any wonder that not many have been able to speak out and say “Me, too?”

No, I am not asking for credit for doing this.  I am just praying that if you know a chronic pain patient that you will give a second thought about the stereotypical comments that come to mind.  I don’t presume to say that all patients feel the same way that I feel, or to the same degree.  But the same thing is true about chronic pain.  Our lives are different, and we cope the best we can with the degree of pain and rejection that we suffer.  To that, we can all say “Me, too.”

In truth, there is no such thing as “Just another chronic pain patient.” 

 

 

 

 

 

 

 

 

 

 


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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!