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LIFE AS A VERB

In the 1920’s prior to his run for the presidency, Franklin D. Roosevelt sought relief from the pain of polio in a place called “Warm Springs” in rural Kansas. In those days, people in wheelchairs were forced to ride in cattle cars while traveling on trains, often left without food or access to any kind of bodily relief all because their chairs were not allowed in passenger cars. While that may seem ridiculously inhumane now, the ignorance that sparked that insensitivity was no different than certain types of medical ignorance we face today.

Can you picture insulin-dependent diabetics being denied access to the medications they need? How about those who rely on prescription drugs to regulate their thyroid, heart or blood pressure? Pain sufferers don’t have to imagine such a scenario. Every day in this county, another good doctor is forced to shut his/her doors to pain patients, leaving patients in unimaginable pain and doctors without practices. While it may be the class of drug at issue, those drugs treat a disease. A disease called pain. And make no mistake, chronic, intractable pain is a disease. So why then, is it treated so differently? The great majority of doctors being arrested, prosecuted and tried are innocent of any wrong doing. What’s happening in this country today is a fear-based ignorance that re-defines the term “witch hunt.”


Our government’s Drug Enforcement Agency (DEA) which is part of the Department of Justice (DOJ), in it’s continued failed attempts at shutting down the flow of illegal drugs to this country has decided to chase the easy target; sick people who are in pain and in many cases unable to fight back, the doctors who treat them and the pharmacists who fill their prescriptions.

The doctors being harassed often can’t afford to fight against the government’s blank check and must shut their doors to the suffering. Many pharmacists stop carrying the needed medication or refuse to fill the prescriptions due to theft, another issue. As is usually the case with fear-based problem solving, this approach to fixing drug related crime is hurting the people who need the most protection. Addicts will always find a way. Chronic pain sufferers have no energy for such cunningness.

In 2004, the pharmacist I had been using for many years told me he would no longer honor my health insurance prescription plan when it came to the one narcotic in my long list of medications. If I wanted it, he told me, I needed to pay cash. His unilateral decision (while he didn’t own the pharmacy, the owner supported him) was a breach of their contract with my insurance company, and his actions were prompted by his truculent and erroneous belief that I was a drug addict. If I had been a new customer I could understand his caution, but he knew me and my health issues, knew I never switched doctors and knew I never increased my pain medication nor the intervals in which I was taking them. In the end, I was forced to find another pharmacy, a scary move because I could have been targeted by the DEA for “doctor or pharmacy shopping.” It happens all the time. As it is with me, the patient usually can’t afford to pay cash because they often can’t work and are often on disability. So when a pharmacist does what he did to me, it leaves few options but to switch in hopes of finding a humane and ethical pharmacist. But why should I or anyone else in pain have hide in shame? I had done nothing wrong, unless you call being born with a tumor disorder a sin.

While his actions were being investigated by my insurance company (I called them right then and there in the pharmacy), I discovered the pharmacist hadn’t been reimbursing me the full amount for my medication for over a year, so the insurance company reimbursed me. They told me they were ending the pharmacy’s contract with them, though I have no idea whether they went through with that threat because they also suggested I find another pharmacist. Since the suggestion came from my insurer, I felt safe switching as far as the DEA was concerned. However, I insisted on a formal letter instructing me to switch, just in case. The weight of worrying about such things while feeling the way I do goes way beyond my capacity to bear.

Understanding the difference between dependency and addiction is a must for every doctor and pharmacist. While it is one thing to understand it as described on paper, admittedly, it is often difficult to ascertain with a new patient. Am I dependent on these drugs? Yes. Just like the insulin-dependent diabetic. Am I addicted? No, not psychologically. I would go through physical withdrawal if I ever got lucky enough to not need them, but after that, I would not crave them because they do not make me high. It simply helps with the pain. Physical withdrawal can be experienced from an abundance of substances, not just narcotics, that is why it is imperative to have a withdrawal plan as laid out by a physician. I also get relief from “alternative” treatments, such as acupuncture, and I have managed to reduce my medication by half. I take less because I have been able to, but I cannot cut them out all together. Alternative treatments don’t work for everyone. Like anything else, it depends on the individual. Simply put, there are no panaceas.

Does the fact that I need a narcotic mean I’m an addict? Hardly. If an insulin- dependent diabetic decided to stop taking insulin, would that mean they were cured? Does it mean they are addicted if they stop and go into insulin shock? Of course not! I know insulin is not a narcotic but if the chronic pain patient is not addicted in the way the DEA is trying to sell it, the analogy works.

How about someone with bipolar disease? If they stop taking their medication, does that mean they are cured? Or are they addicted to their pills? The answer of course, is neither. Like me, they would probably, eventually, die. I would die because I could not live in the kind of pain I am in without my medication. My heart would fail from the stress of the pain.


The diabetic would die because their body does not make insulin on it’s own. The bipolar personality would possibly die because they felt they were “okay” when they weren’t, and perhaps harm themselves. It’s the class of drug that is at issue, even though it has a job to do. Narcotics, used responsibly, should be treated no differently than any other medication.

The actual addiction rate for pain patients, according to several medical studies, is about 1% because most pain patients don’t experience a high when taking narcotics to relieve pain. That is because pain patients don’t crush and snort the drug. It’s introduced slowly, over time, a system called titrating. The higher statistics the DEA brings out about usually include addicts and those with addictive personalities, people who are not true pain patients and should not be added to the numbers.

If one were to use the government’s reasoning for shutting down the flow of legal narcotics, alcohol and tobacco should be ripped from store shelves immediately. We know for certain that those substances are addictive and kill not only the users, but many times, people who don’t use them. Whether it’s secondhand smoke or a drunk driver, we’ve known about these killers for years, yet any child can waltz into most any store and purchase either of these substances. The lobbies for alcohol, tobacco and firearms (ATF) are too strong and threatening to the ambitious and/or shady politician. If someone gave you significant amounts of money to run for office, you best support them or be looking to sell shoes after your term is over.

Chronic pain patients are most often not treated or under treated, and doctors who care for them are being arrested at a rate that is too high to justify no matter how you cut it. The Justice Department keeps claiming the number of arrests is around 100 per year. That may have been the case many years ago, but in recent years the number is more than three times that amount (several websites that watch over this issue track the number of doctors being arrested, prosecuted and tried). Our government is treating it’s sick as poorly as in countries whose leaders we love to hate. No difference. No kidding.

When the answer to pain is in a bottle that’s unreachable, the suffering are left with suicide as one of the only options. And the suicide rate of people with untreated chronic, intractable pain is much higher than that of the general population. Whether caused by a neurological disorder (as in my case), the repercussions of an accident or the result of one of a multitude of diseases or disorders, genetic or otherwise there is no way to explain what it’s like to live life through pain's filter.

One must start by understanding that chronic pain is a disease like any other. It affects approximately 50 to 100 million Americans, with social costs in disability and lost productivity adding up to more than $100 billion annually. These numbers alone should be enough to convince the public that it’s a real problem that needs to be addressed in a meaningful way. It is not the same as emergent pain, such as slicing a finger instead of the vegetables, where you may go to the ER, get a shot of Demerol and some pain pills to last a couple of days and be done with it. Nor is it the same as a condition that flares up every once in a while, such as bursitis. Yes, those things are painful. But no, they aren’t the same as chronic, intractable pain, which can be described as a continuous, sustained pain lasting six months or longer.

One challenge with treating chronic pain is that sometimes doctors can’t find the cause immediately, thus disputing the patient’s complaint. Even when MRI’s and other tests confirm a problem, doctors occasionally have a hard time knowing how to proceed, and may even have difficulty understanding the patient’s description of the level of pain. Missing something that is horribly wrong can happen as well, though hopefully doesn’t happen often. Meanwhile, the pain often takes on a life of it’s own, becoming insatiable as it eats away at both body and soul.

Because many pain sufferers don’t use wheelchairs, have canes or any other visible signs that something is wrong, chronic pain can best be described as an invisible disease. Therefore, patients are often expected to perform normally — have jobs, raise families and move about in the world like anyone else.

However, everyone’s tolerance for pain is different, and even patients must be careful not to judge, comparing one’s own ability to endure pain against someone else’s. Since the cause often determines the level of pain, comparing is pointless. Neuropathic pain, for instance, is completely different from endometriosis pain, a gynecological condition. And while there are many non-pharmaceutical approaches to pain relief, some types of pain simply don’t respond to those treatments, just like some types of diabetes don’t respond to diet. Narcotics aren’t always the answer, either.

On days when the pain feels manageable (for me, that’s a 5 on a 1-10 scale), we can sometimes go out and feel normal for a few hours. But if the pain suddenly shoots past a 10, we may look as though we are dying, our faces contorting as we grab onto something to steady ourselves. Try explaining that to the stranger next to you in line at the supermarket who thinks perhaps you are having a heart attack. In addition to concentrating on our breathing to get past the moment and get home, we must make sure no one calls the paramedics. These facial expressions, coupled with uncontrollable jerky body movements (I have broken down in tears and twisted and turned my body in an effort to find physical comfort) often mimics the behaviors of drug addicts, further complicating public perception and understanding.

Because chronic pain is so difficult for people to understand, those of us living with it often feel isolated, ignored and forgotten. If pain persists over a long period of time with no relief it can be devastating for patient and family alike. It’s tough enough for people to learn how to be with someone who is dying. But how does one act with someone who is always in pain, and not dying?

Someone who depends on large doses of pain medication to get through the day, whether they are able to move around or not? How do you talk to that person? How do you support them? And what happens if you are the patient? Just because you are in pain and perhaps forced to stay close to home, doesn’t mean the lives of your family and friends have stopped.

They’re still doing all the things you use to do: working, taking care of their families, going out to dinner, to movies, being with friends, traveling. Family and friends might want to be with you, but don’t always know how. They may understand intellectually that you need to stay close to home, but that doesn’t make it easy for them. And when a friend calls to complain, “Man, I had a real bad case of the flu last week and I was home all day on Thursday,” and you don’t know whether to laugh, cry or scream, that’s when you know you’ve been isolated a long time. Time moves very slowly if you are in pain, unable to leave home. When you were busy, talking to a friend once every couple of weeks felt perfectly normal. But now a day is an eternity, making it easy to become unreasonable with demands on friends and loved ones. While it is true many people don’t understand something unless it happens to them personally, it does not justify our elected officials making access to the medication some patients are dependent on more and more difficult.

It’s indefensible that these policymakers have taken a “let them eat cake” attitude toward the desire for physical relief, purportedly because they claim that all people taking opiates become addicted. But the addiction problem is a “sexy” story that sells papers and motivates political agendas, and while I’m not disputing that drug addiction it’s a serious issue, I take offense at inflating this problem by throwing in those who are in need of medication to treat a disease.

As a chronic pain patient, I can tell you it will slither around wreaking havoc in every aspect of your life, if you let it. You must be diligent and strong when all you want to do is die. Not only must you take care of the business of being sick, you must keep up with the everyday responsibilities of life, like bill paying, cleaning, shopping, cooking, etc. All these challenges can be daunting, especially if you are also dealing with government agencies like social security disability. Filling in the required forms and ensuring the accompanying documentation is accurate and remitted on time would be challenging for anyone, but to someone in chronic pain, it can feel insurmountable.

And what if you have people dependent on you? How can you shop, cook, and clean for others when you can barely take care of yourself? How can you be a parent, spouse, business partner, employee or friend when your focus everyday is dodging pain? And what about the financial aspect of being ill? What if you lose all or part of the income you depend on? Not being able to meet your financial obligations can be as ruinous as the illness itself.

Every day in this country, thousands of people are suddenly faced with challenges due to lost health and income. I know it isn’t as sensational a natural disaster, but it is as every bit as devastating. And with no telethons, no emotional support, no point person to say, ‘Here’s what you do’ it’s re-inventing the wheel with each new person it touches. I can tell you from personal experience, that not only is there no one to tell you how to get benefits, the people at social security disability do everything in their power to make sure you don’t get it, even though it was designed just for that purpose. Initially, I was told, and I quote, “I’ve never seen anyone with your disease get benefits and I doubt I ever will.” This coming from someone who is paid to help people like me. While certainly, there are folks who try and cheat the government, there is enough paperwork to catch most of those people. But they want you to give up before you start, even though most, like myself, paid into the system for many years. I worked for 35 years before needing these benefits, and that is what they are there for, although that chapter may sadly, be coming to a close.

Who are we as human beings when we have the ability to help people, but instead, deny access to that help? When the most powerful country in the world denies medication to its’ sick because an addict abuses it, are we not guilty of hurting, if not killing, our own citizens?

How then, are we different from the so-called “evil doers” in the countries we love to hate? That accusation is not a stretch. One federal prosecutor declared he would “root these doctors out like the Taliban.” That is an exact quote, though I am not willing to open myself up to a lawsuit by naming the prosecutor.

No wonder doctors are running in fear. While there will always be a small portion of doctors who over prescribe, the ones who do so knowingly are certainly not the norm. When this over prescribing happens, it is usually because a patient has lied to their doctor or shopped for more than one doctor to get more prescriptions. Of course, these are the people who shouldn’t be taking narcotics. Those who abuse them for recreational purposes and those who can’t tolerate them physically. But prosecutors delight in locking up people who are trying to help, never considering what happens to the patients who are left in the wake of this witch hunt. Policymakers seem unconcerned that we are punishing millions of pain patients who lose access to their medication for the actions of a few. And in the process, the lives of good doctors are being destroyed. Even if the doctor is eventually acquitted, it often happens too late for him/her to recover financially, costing them their careers. Again, if we are going to rush to judgment about narcotics, then alcohol and tobacco should also be pulled from the shelves.

Even more disturbing is the fact that this battle is trampling on the constitutional rights of millions of Americans. When people become frightened, they often willingly abandon their rights in the misguided belief that it will change things for the better. And what’s more frightening than drugs and drug dealers?

What’s scarier than our children becoming addicted and disappearing from our lives? People’s fear of everything being completely out of control due to the use of these substances and fueled by the media is making it profoundly difficult to relieve human beings of their pain and suffering. All because the DEA simply refuses to distinguish between patients and criminals. So what happens? Patients and doctors alike become hopeless, and in many cases, take their own lives.

That is not hyperbole. Many people have chosen this path because they see no other way. As a patient, you may not be able to tolerate the constant raging pain due to the unavailability of medication. As a doctor, you may have been forced to close your practice because you’ve spent all your money defending yourself against false charges. And instead of doing what you love (practicing medicine, relieving people of pain) all of your time and energy is spent in court. After a trial, many doctors are forced to quit the practice of pain control whether they were acquitted or not. And that is what our government counts on.

Doctors who practice pain control quitting. Doctors and patients alike want special training for those who practice pain control. Yet, the American Association for Physicians and Surgeons (AAPS) posted an open letter on it’s website urging its members not to go into the practice of pain management! Now that’s frightening. When an association for physicians starts advising doctors not to practice a certain specialty, we have a big, big problem.

People in pain want the same thing everyone else wants: to lead a normal life, to contribute, to love and be loved, to grow and be happy. This is one of the most difficult parts of being in chronic pain; knowing that people are being denied help because of the DEA’s overzealous attack on physicians and patients in the name of our “War on Drugs” which has turned into a war on pain patients.

Ultimately this is about finding and using, personal power. That is difficult under normal circumstances, but when you are sick or in pain, you must dig even deeper. It may feel like everyone is out to get you: government agencies, doctors, creditors, even family and friends. Finding someone on your side can be challenging, but you must stand up to the challenge if you want to succeed. By succeed, I mean finding someone or something that will help you through.

Whether it’s an online support group (there are many for people in chronic pain, and some for just about every disease), a medical treatment, mainstream or alternative, friends, family or a book that helps you understand your problem, use it well. This is the way, of course, we should all live our lives. But when you lose your health and sometimes, as a result, your wealth, there is no other choice. And you better believe life turns on a dime. Not even. Learning to live in the moment and just “to be” is a lesson I must learn each and every day.



2 comments:

  1. For Angela

    Them tumours
    Bubbles of hate
    Akin to stubbing a toe
    Not plucked on this cord
    Spinal swine
    Legs tingle
    She wobbles
    Dull torso throb
    Amidst the morphine dawn
    Sit, stand, lie
    It still won’t go away
    Sleep please
    Cellular explosions loud but faint
    Neurofibromatosis 2
    Its leaning up against her spine
    Against her mast
    Colliding with her mainstay
    Twisting and entangling
    Unravel the swelling from her legs
    Camouflaged in painkiller shadows
    Preserved, quietly in the dark
    And all presumed professionally by
    Ducks and quacks
    Diagnosis missed
    Along with the 2 discs
    It’s a GP blitz
    5 years
    She’s endured
    Reaching this place
    Where she thought she saw light
    felt change near
    Only to seize from protein murky water
    From decline to fall
    Who of you have beat nf2
    Come forward and help my beloved sister to that door

    ReplyDelete
  2. I am so sorry about Angela. You write beautifully. Thank you for the lovely, but sad, comment.

    ReplyDelete

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