I thought you might enjoy a few more graphics.
I have read this many times before but found it again and thought I would share it. It is written so well and expresses how lupies feel in general… I did not write this although it fits me well…
A letter to be shared with friends and family
by Theresa Stoops in Florida
WHAT YOU SHOULD KNOW ABOUT ME
My pain – My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real.
My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
My forgetfulness – Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.
My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it.
My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot- filled. If I can stand the pain, regular massage can help, at least temporarily.
My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going.
My uniqueness – Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me,
I have shared these thoughts with many “Lupies”, as we call our self, and they agree with me. So when you see someone at the store who gets out of the Handi-cap space and they look fine — Do not judge them as you may Not know their Inner pain.
==== And always remember I LOVE YOU! ====
I seem to be quick about the negatives in this journey with lupus, but for today, I want to share some good news. For two days now, I have been on a new medicine and for two days I have felt like a totally different person. I feel alive! I have energy! I feel light!
See, I told you…good news indeed! I am finally feeling wonderfully like me!
The reason for this is I had my appointment at the pain clinic and they are addressing the oppressive pain I have been dealing with and working on a plan of action to make me feel better. The first step is the new medicine I am on. The second step is a tens unit to target my pain and the third step is massage therapy. Who knew?
For those of you who are not aware, I have been virtually bed bound for some time now. I only got out when I had to, like doc visits and grocery. Even those were hard to do because of the overwhelming pain. Some days all I did was get up for the bathroom and the rest of the time was spent in bed. Not sleeping, just laying or sitting and unable to do much but feel bad. It is not a nice way to live.
I never wanted to see a pain doctor. I had heard all the bad stories about pill pushers who serve the addicted population and that only addicts went there. It took one strong willed lupie sister to talk me into going. Ok, scratch that, she threatened to come to my house and make me go if I didn’t make an appointment myself. I am so thankful for friends like that. She cared enough to do that and make me go into uncharted territory for me. I was way out of my comfort zone here.
I never wanted to go because in my mind, those who needed those things were weak and unable to be in control of their lives and take charge of their pain. I was taught growing up that you overcome pain by sheer willpower and grit. Well, how did that work out for me? I was reduced to being in bed most days because of the pain I was in.
When I finally got my nerve up to talk to my rheumy, he gave me a pain med that did nothing for my pain. After my friend and several other lupies I had talked to told me their stories, I decided to make the appointment. I kept the appointment and wow! why did I wait?
You see, I had done research and even posted articles on this blog about pain management. I was a fraud though, because even though I acknowledged that others needed stronger pain relief for a better quality of life, I would not do it myself because of these thoughts in my head I mentioned above. It is like saying “For you it is great but I am not that much in need”. WHAT!?
When your quality of life is impaired to the point that you are almost completely bed bound, how much lower do you want to go? So, I am here to say….if you are living in pain, get help! Do not think like I did and do nothing. I mean, unless you enjoy being in pain.
Some are fortunate enough that their doctors will help them in pain management. Others may have to seek out a pain clinic for their relief. The bottom line is how bad do you hurt? Today, I can honestly answer that even though I still have pain, it is in the range that I can function and get out of bed and do things! It is still there, just not as bad as it was.
I am thankful for those who gave me their honest input and lovingly pushed me to do this. Thanks is not enough! They have helped me to be able to live better, love much and give to others. The gift of these friends is immeasurable. Thank you all and you know who you are!
Ok, this is one of my personal posts. The last seven days have been an exercise in fluctuating emotions and symptoms. I have had good days and bad days. The good ones I accomplished much. The bad days were spent in bed, in pain, and severe fatigue. I have noticed the pain is getting progressively worse. It is a scary feeling, entering into painful waters on this journey of the wolf.
I have got an appointment at the pain clinic but I have to wait until December. I will update when the time comes. I am also waiting for the results of my tests from the neurologist. I am taking the path that no news is good news. I am not sure how much I can deal with right now.
On my good days, I have done much housework and other chores that wait for my good days. I closed the trailer up for the winter, with the help of my son. I also washed the dishes. We do not have a dishwasher, unless you can say it is me. It is amazing how the dishes stack up and wait for me to do them.
So, that is that. I am getting really upset about trying to feel better when my body will not cooperate. In my head, I am fit and able to do much. In my body, I am like an eighty year old who can only do so much and must take naps. Who knows what tomorrow brings? I am keeping cautiously optimistic that it will be wonderful tomorrow! Thanks for listening to the boring moan from me. Have a great day and hope it is pain free!
I found this online at the website www.healingwell.com. It is written by a nurse and fellow lupus patient and is informative. Enjoy!
Chronic Pain in Lupus
by Karyn Moran Holton
Chronic pain. Pain that goes from bad to worse to unbearable. Pain that lives with you every day of your life, never ceasing, not even long enough to get a night’s sleep, is one of the worst things about having lupus.
Because lupus primarily affects women, I found it interesting that the National Institute of Health noted that women report more severe and chronic pain than men, and urged doctors to factor sex into diagnosing, treating, and researching chronic pain management. (JAMA, 280:120-124. 1988)
The NIH Revitalization Act of 1993 mandated that women and minorities be included in clinical research. Previously, pain research had been male-oriented because of (get this) “The alleged rationale has been that the estrus cycle in women would confuse the results.”
It may be true that women react to pain differently than men do. Dr. Lesche of NIH states, “Pain may arise in women with differences in anatomy or physiology of neural systems, perception of pain, and the cognitive and emotional ways of dealing with pain.” If pain may arise in women, then more research is needed focusing solely on chronic pain in women! Simply ignoring women’s pain is not a viable solution, and more therapies for the relief of chronic pain must be found.
The first line of defense against chronic pain in inflammatory diseases like lupus and arthritis has always been pharmacological. Non-steroidal anti-inflammatories (also called NSAIDs) such as aspirin and ibuprofen (Advil or Motrin) have been used to treat mild cases with success. For more intense pain that does not respond to NSAIDs, narcotic analgesics, such as demerol and morphine may be used. However, for some patients with chronic pain, the addictive effects of narcotics may be too much for them to be used on a long-term basis.
This is where alternative therapies have stepped in. Pain relieving techniques like hypnosis and magnetic stimulation therapy have given patients a non-medicinal alternative that may be more beneficial in the long term.
Dr. P. Logue, of Duke University Medical Center‘s Department of Psychiatry and Behavioral Sciences, made some statements regarding hypnosis: “It is known that a patient’s cognitive and emotional state can influence their physiological system. Changes in their physiological state can affect their overall function. This intimate mind/body relationship can be used to treat painful states via hypnosis. Enhancing the nervous systems inhibitory process can modify pain…Hypnosis can induce a state of relaxation, calmness and peacefulness, even in the midst of external distress. This temporary state of calm can effectively reduce a patient’s subjective experience of pain.” Dr. Logue also stated, “Why would any clinician want to use a procedure that must be explained and justified to the ‘outside’ world? Because it works. Not always in a spectacular fashion, not with every patient, and not with every condition, but it does work.” (NC Medical Journal, 53:176-179, 1988.). In NIH studies, 75-80% of patients had a positive reaction to hypnosis.
Another fairly new type of therapy for chronic pain is magnetic stimulation. According to Dr. J. Pujol of the Magnetic Resonance Center of Pedralbas in Spain, a study using magnetic stimulation to localized pain reduced pain 29 (out of 101) points in patients. In a sham situation, patient’s pain was only reduced 8 points. In a test using a sham stimulation, and then using magnetic stimulation, patient’s perception of pain dropped 30 points after magnetic stimulation. The effects can last up to a few days, as opposed to a few hours for medicinal therapies. (NeuroReport 9 1745-1748, 1998.)
Perception of pain is as individual as each person. What works for one person may not work for another. It may be helpful for the person living with chronic pain to experiment with different therapies. It is advisable to start with the least invasive, or least expensive, therapies and go on from there. Try using ice packs before taking medication, and try medication before seeing a surgeon. The main thing to remember is that no one needs to suffer needlessly, and to keep looking until you find the pain relief that works for you!
© 1999 Karyn Moran Holton
Karyn Moran Holton is a nurse who has been diagnosed with lupus for the past 3 years, and has spent most of that time trying to raise awareness about lupus and other under-appreciated autoimmune diseases.
I am posting these articles to show why many doctors feel unable to adequately treat chronic pain with medications that have been shown to not only work for those with chronic pain, but can actually lead to a much improved quality of life.
Please read these articles and form your own opinion. I welcome comments as well.
“The Police State of Medicine”
First, I would like to thank the Drug Policy Foundation for the opportunity to speak to you today. I understand that the rights of patients to effective treatment and the impact of current drug policy on the doctor-patient relationship are very much on your minds, as they are on mine. I offer my story as a case study of regulatory abuse, as we try to fashion an adequate political and legal response to what I think of as “The Police State of Medicine.”
I will begin with a review of the legal events in my case. I will then tell you about my patients and the impact of the legal action against me on them. Finally, I would like to address two related questions:
What Happened to Me?
In May of 1996, my license to practice medicine was suspended without a prior hearing by the Commonwealth of Virginia after the deaths of two of my patients were incorrectly attributed to my treatment. I was charged with having prescribed excessive doses of opioid analgesics in the treatment of 30 patients who, it was acknowledged by the Board of Medicine, had conditions causing intractable pain. The charges were brought without any apparent reflection by the Board on the applicability of Virginia’s Intractable Pain Act, upon which I was relying for legal protection.
The hearing might well be characterized as a Kafkaesque inquisition. This was not anything close to an open-minded search for the truth in which legal adversaries present evidence before an impartial finder-of- fact. This Board thought it knew from the outset what constituted proper pain management, and it thought it knew that the high doses of medication I prescribed to many of my patients were illegitimate and without clinical rationale. The number of pills I prescribed was all the evidence the Board or its prosecutors thought they needed. They had not even bothered to subpoena my medical records!
When we pointed out that, under the Virginia Intractable Pain Act, dose alone was an insufficient legal basis for disciplinary action, rather than dismiss the charges, the hearing was turned into a fishing expedition for evidence with which to smear my name and to provide a rationale for the harm they had already caused me and my patients by the summary suspension. The prosecuting attorney sponsored testimony to the effect that I was taking money under the table for prescriptions — testimony which was subsequently shown to be pure fabrication — without disclosing his witness’ prior felony conviction for fraud. He also presented testimony from an addiction specialist, who, it turned out, had himself been disciplined over a ten year period by this very Board. He had been an anesthesiologist who was addicted to Fentanyl, a strong opioid used in anesthesia, which he stole from his patients — leaving them to buck in pain on the operating table.
My experts — all pain specialists of international repute (one of whom, Dr. C. Stratton Hill, is being honored at this conference) — were harassed by cross-examining Board members. My patients, many of whom had traveled from distant states, were ignored, ridiculed, insulted, and ultimately condemned to pain and misery.
After this caricature of a hearing, my license was revoked. Although the revocation was stayed and my license was restored after three months, my authority to prescribe the controlled substances necessary to treat my patients was withheld. The Virginia proceedings set in motion a cascade of legal action against me. The authorities in the District of Columbia, where I was actually in practice, suspended my license. This provided the DEA a basis to revoke my registration — although ultimately they agreed to transfer my registration to my Virginia address with restrictions paralleling those imposed by the Virginia Board.
After an informal hearing in August of 1997, the Virginia Board restored my ability to prescribe pain medicine and accepted a protocol for treating pain patients that was essentially the same as I had been using prior to my suspension. By doing so, the Board appears to have accepted the legitimacy of the therapeutic principle that calls for adjustment of medications according to patient response without limit as to dose or combination. The Virginia Board’s action remains, at best, a symbolic gesture without practical consequence, however, unless and until the DEA restores my registration and the Board has an opportunity to demonstrate its good faith.
An appeal from the original Board Order of August 1996, in which the Court is called upon to interpret the extent, if any, of the safe-harbor protection afforded by the Virginia Intractable Pain Act, was heard in August of this year (1997). The Court has not yet issued its opinion. Nor has the DEA responded to the application I submitted over four months ago for full restoration of my prescribing privileges. It’s not their pain.
Only participants can have any idea of the exorbitant personal and professional costs such legal proceedings exact. But this was nothing, when compared to the impact on my patients.
What Happened to My Patients?
At the time of the Virginia Board’s suspension in May of 1996, I had over 200 patients with intractable pain from all over the United States. Some of their stories are gripping:
There were over 200 of these patients with crippling pain from failed backs, arthritis, multiple sclerosis, interstitial cystitis, arachnoiditis, RSD, TMJ, trigeminal neuralgia, and phantom limbs. . . the list goes on and on and on. Many of them had come to me after years of unsuccessful attempts to obtain relief from a multitude of procedures, doctors, and pain clinics. They were treated like addicts and criminals.
They were stigmatized, insulted, neglected and abandoned. Betrayed by the whole medical profession with the refrain, “I would like to help you, but I can’t. I don’t want to lose my license.” But who can blame the doctors, who are themselves the victims of the thuggish drug-control police and the heartless and mindless bureaucrats who serve on boards of medicine.
When my patients came to see me, they were terrified that I too would reject them, or subject them to more tests, more procedures, more expense and delay. But my approach was different. I asked them what had worked in the past, and that was my starting point. I let their response to medication guide my treatment. If one medication didn’t work, or made them sick, we — the patient and I — tried another. If a medication became less effective, we increased the dose. Sooner or later, we found what worked best for each patient.
The response to pain relief was dramatic. People who hadn’t worked in years went back to work. People who could barely get out of bed began to move, even to dance. Some no longer needed crutches or a cane. Almost everyone reported that their lives were better. Many said that I had given them their lives back.
When word went out that my license had been suspended, there was panic as patients contemplated what it would mean for the pain to return. Lives that had been rebuilt on the basis of pain control had lost their foundations. After I lost my license, the fear was palpable: pharmacists afraid to fill my prescriptions, doctors afraid to take my patients, and patients desperate for continuity and certainty. Added to the stigma of taking morphine, methadone, or Dilaudid, was the stigma of being one of “Dr. Hurwitz’s” patients.
There were a few happy stories. A few physicians who had known my patients before they came to me and saw their improvement while under my care were willing to continue the treatment. Pain specialists at some of the academic centers and a few brave doctors in private practice were willing to take my patients. Some of my patients, those who had saved a reserve supply, were able to obtain a modicum of pain relief and avoid the symptoms of abrupt withdrawal.
Some stories were not so happy. A few patients went through horrible withdrawals — a number who availed themselves of medical help were admitted to psych units and detoxed cold turkey. Some found doctors who were willing to treat them, but were unwilling to continue what had been successful medication regimens. Some were exploited by doctors who imposed expensive and risky procedures as a condition for receiving pain medication. And some just gave up, exhausted by insurmountable obstacles.
There were two suicides directly attributable to the prospect of inadequate pain control.
How Does The Police-State of Medicine Affect Medical Care?
The quasi-criminal liability imposed on physicians distorts clinical information and medical judgment, impedes the development of clinical expertise, undermines the ethical commitments necessary to medical practice, and leads to the abandonment, wasted lives, and deaths of patients with intractable pain. Holding physicians liable for the misbehavior or dishonesty of their patients turns physicians into policemen and is, in principle, incompatible with effective medical care.
In what other context do we sit in judgment of a patient’s moral worth to determine his eligibility for treatment? Is a former addict with AIDS less entitled to medical care than the victim of a contaminated transfusion? Or less entitled to pain relief with opioid medications?
To me, the unequivocal answer is no. We are not society’s policemen, nor should we be. I am not arguing that we should be indifferent to the use to which our prescriptions are put. I am arguing that patients deserve the benefit of the doubt, that a Draconian response to the occasional, but inevitable physician error in providing medication to the dishonest patient who may be misusing or diverting medication has the inevitable consequence of denying pain relief and perhaps condemning to death the honest one.
Effective medical care requires trust in both directions. A patient must trust that his physician is acting in the patient’s medical interest. But how is this possible when the physician’s career is threatened by doing so? A physician must trust that his patient is reporting his circumstances and symptoms accurately. How is this possible when the patient is afraid that the truth will look suspicious, and that merely looking suspicious will prompt abandonment?
Under current regulatory policies, distrust governs the treatment of pain and subverts the usual clinical calculus of risk and benefit. Patients are subjected to a modern version of trial by ordeal, where their credibility as patients is measured by the pain and indignity they are willing to endure and the expense they are willing to incur. And physicians who are unwilling to impose these indignities as a condition for pain treatment are punished with the destruction of career, reputation, and livelihood.
In the end, the only important clinical question should be: What is best for the patient? As physicians, we treat individuals for the simple reason that they are fellow human beings, and our treatment must respect their humanity. Respect requires that patients be afforded the dignity of choice — the freedom to choose or refuse treatments based on their calculus of risk and benefit and cost. The current regulatory regime effectively denies most patients the dignity and respect that simple humanity requires.
What Can We Do About It?
The stakes in this battle are too great to leave its outcome to the valiant efforts of the dedicated few. We need reinforcements in the form of legal help, publicity, and financial support to help make boards of medicine and the DEA legally and politically accountable for the misery they engender. Intractable pain acts are not enough. And if boards of medicine were, as a practical matter, legally, ethically and politically accountable, such statutes would not be necessary.
Our strategy should be to raise the cost to the regulators of their regulatory tyranny and to lower the cost to physicians, pharmacists, and patients of defending their rights. We need to destroy the public’s naive presumption of the regulators disinterested good faith, to debunk the myth that medicine is being regulated in the public interest, and to reveal the abuse of power for what it is. Only then will we empower physicians to help their patients, and patients to control their pain.
* Dr. William Hurwitz, MD, is 51-years old and a graduate of Columbia College (1966, BA), Stanford Medical School (1971, MD) and George Mason University School of Law (1996, JD). Married with two children, Dr. Hurwitz resides and now practices medicine in McLean, Virginia — prior to the revocation of his medical licenses, he practiced in Washington, DC. Dr. Hurwitz and this issue have been the focus of in-depth reporting by CBS’s “60 Minutes,” “US News & World Report” and PBS’s John McLaughlin.
Remarks By Dr. William Hurwitz,* MD
October 18, 1997
NEW ORLEANS, LA
The Drug Policy Foundation*
Copyright © 1997 by Dr. William Hurwitz, MD
article By Katherine Eban Finkelstein
Copyright Playboy Magazine, August, 1997
|THE DEA IS BUSTING DOCTORS FOR PRESCRIBING DRUGS-AND PATIENTS ARE DYING IN PAINDONALD DEWBERRY, 44, a retired aircraft mechanic, went to Dr. John McFadden several years ago after two failed surgeries for degenerative disk disease. 7he pain in his neck was crippling, and even moving his eyes triggered it. Dr. McFadden, who is medical director of the Tupelo Pain Clinic in Tupelo, Mississippi, prescribed Dewberry narcotic painkillers known as opioids, which are highly effective and rarely addictive when taken to relieve pain.Unfortunately for McFadden, he was under surveillance. Federal and state narcotics investigators first went to his red-brick clinic in 1987 on a tip from the Mississippi State Board of Pharmacy that he was overprescribing painkillers. They sifted through his inventory logs for evidence that narcotic medications had been diverted to the street for black-market resale. McFadden claims that only minor record-keeping errors were found. Yet because McFadden specialized in pain treatment (and therefore had prescribed narcotics such as Vicodin and Tylenol #3), he was subject to continuing suspicion. Over the next nine years, agents from the Mississippi State Board of Medical Licensure periodically investigated his prescribing habits.
A new front had been opened in the drug war, and patients in pain were potential enemies. Even though McFadden, the only pain specialist in northern Mississippi, administered legal medications of great benefit, his prescribing of narcotics targeted him as a suspect.
In March 1996 a state medical board investigator arrived at his clinic with a search warrant. “We had been expecting him. We knew he had to do his job, so we were friendly and said, ‘You can look at any-thing you want,”‘ McFadden recalls. The agent seized the medical charts of 36 patients. Several months later McFadden was notified that the medical board had charged him with 11 counts of violating the Mississippi Medical Practice Act, including unprofessional conduct “likely to harm the public.”
After two days of administrative hearings and 30 minutes of deliberation, the medical board-whose members are appointed by the governor-suspended McFadden’s medical license and prohibited him from prescribing a variety of controlled substances on an outpatient basis. McFadden’s censure has had a chilling effect in Mississippi medical circles. To avoid similar repercussions or scrutiny, other area doctors have virtually stopped prescribing narcotics. One doctor in Tupelo posted a notice in his waiting room: DO NOT ASK ME TO REFILL PAIN MEDICATIONS. In a doctor’s office 40 miles away in Corinth, a sign read DON’T ASK FOR OPIOIDS.
McFadden’s patients, meanwhile, were left in pain. When Dewberry returned to his longtime family practitioner in nearby Oxford and asked for a prescription, the doctor chewed him out. “‘You’re just an addict,”‘ Dewberry recalls him saying. He has since stopped taking medication, and the pain keeps him in bed: “I’m in this haze of fighting pain. I’m trying to raise two teenagers, and I have a mortgage on the house. But if I said, ‘Heck, if it all falls to pieces . . .’ then it does.”
By almost any measure, America has lost its war on illegal drugs. Cocaine and heroin still cross the nation’s borders. “Cat,” or methcathinone, can be purchased in any city, despite endless law enforcement efforts to buy and bust. Meanwhile, the real threat from illegal drugs has fed America’s opiophobia, an irrational fear of narcotic pain relief. Needing a winnable war, the government has cracked down in doctors’ offices. Across the country, state agents, allied with the DEA, have staked out pain clinics under the assumption that wherever narcotics are prescribed, diversion of the drugs will soon follow. In pursuing this theory, the government has criminalized an entire class of patients and scared doctors into abandoning them.
As a result, pain is grievously undertreated. According to the National Chronic Pain Outreach Association, an estimated 34 million patients suffer chronic pain and lose 50 million workdays a year. Seven million of these patients cannot relieve their pain without opioids, but there are only approximately 4000 doctors in the country willing to prescribe them. A recent New England Journal of Medicine editorial noted that 56 percent of cancer outpatients and 82 percent of AIDS outpatients received inadequate pain treatment. Fifty percent of hospitalized patients with a range of illnesses also received inadequate pain treatment.
Our drug war has overshadowed our pain crisis because the former is fought by politicians, while the latter is lived by patients who are often confined to bed. In the absence of an effective pain lobby, politicians have been able to whip the public into an opiophobic frenzy. “All you have to do is scream about the drug hysteria, then everyone tucks his tail and runs,” says Dr. Stratton Hill, a Houston pain specialist. “No politician wants the charge that he’s soft on drugs.” Late last year the Clinton administration challenged referenda in Arizona and California that would legalize the medical use of marijuana for easing the pain and nausea that are related to cancer and its treatment. This past March the president emerged from knee surgery declaring that he would not medicate his pain with narcotics.
While doctors may shrug off such proclamations, they cannot afford to ignore the investigative machinery that opiophobia has built. “We have established a bureaucracy to catch doctors making errors,” says a leading researcher in pain treatment. “As a result, fear is endemic among physicians.”
In 1984 Congress handed the DENS Office of Diversion Control discretionary power to revoke a doctor’s registration to prescribe medicine. (In order to write prescriptions, doctors must be registered with the DEA.) The 1984 legislation enabled the government to yank this registration if a doctor commits “such acts as would render his registration . . . inconsistent with the public interest.” This phrase, buried in the fine print of the Dangerous Drug Diversion Control Act, significantly expanded the ODC’s latitude. Before 1984, the agency could revoke a doctor’s registration for only three reasons: If he had falsified a prescription, was convicted of a felony relating to controlled substances or had his state medical license revoked, denied or suspended.
With the passage of the act, the rules changed overnight-from black-and-white to gray. Enforcers could pronounce guilt and revoke a registration simply by declaring that the public interest had been threatened. Suddenly, prescribing that was determined to be against the “public interest” was being used as prima facie evidence of diversion. The government had effectively criminalized narcotic pain treatment and had begun to practice medicine.
Since its creation in 1973, the ODC has had a dual function. It was charged with ensuring the availability of pharmaceutical drugs for legitimate needs and preventing their diversion for illegitimate sale and use. But the 1984 drug bill changed everything. Despite limited data on the origins or amount of diversion, the agency targeted doctors and patients, performing search and-seizure operations in the offices of baffled clinicians. The peremptory justice was supported by Orwellian logic:
Patients at pain clinics use narcotics.
Narcotics can be addictive.
Therefore, pain patients are addicts.
This new system encouraged doctors to suspect the motives of their patients. “As doctors, we believe in people, but the government expects each of us to be an FBI unit. We’re supposed to trust no one,” explains Dr. Frank McNiel, a family practitioner in Knoxville, Tennessee.
In deciding who to bust, investigators rely heavily on medication categories that were established in 1970 under the Controlled Substances Act. The DEA groups medications into five different “Schedules,” depending on their potential for abuse. Schedule V contains some prescription drugs as well as over-the-counter cough medicines, which are rarely abused. Schedule IV includes benzodiazepines such as Valium. Schedule III contains anabolic steroids, some barbiturates and blends of aspirin and codeine. Schedule I includes heroin, LSD and marijuana, which have no medical use, according to the feds.
Overwhelmingly, the 1984 provision led agents to focus on Schedule 11. The painkillers here, including morphine and Dilaudid, have a high street value. Looking for a way to combat diversion, agents relied on the all-purpose “public interest” dictum. They used it as a preventive tool, to bust law-abiding doctors prescribing medication that might be diverted down the road. On both the state and federal levels, the distinction between enforcement and prevention collapsed, as did the distinction between criminal behavior and the treatment of pain. Once Schedule II drugs were involved, the DEA decided to shoot first and ask questions later.
Federal and state arsenals are now bristling with weaponry. The DEA performs long-range computer surveillance with the Automated Reports and Consolidated Orders System. This database logs every transaction between manufacturers and distributors of controlled substances. If a large quantity of barbiturates, for example, were distributed in a certain city, it could mean that an organized group had diverted the medication. Law enforcement authorities would launch an investigation.
States use their own monitoring apparatuses to track the prescriptions of individual doctors and their patients’ habits. Some states require doctors to report even their terminal cancer patients as addicts if they are prescribed opioids for a certain period of time. In eight states, including California and New York, doctors who want to prescribe from Schedule II must order registered prescription forms that have multiple copies: The doctor retains one, the pharmacist keeps one and the third copy is sent to state health or narcotics-control agencies. Studies show that doctors in these states have decreased the amounts of Schedule II drugs they prescribe by 40 percent to 60 percent. Possibly, some of the drugs had been diverted and the crackdown was actually successful. But studies also have shown that doctors in these states increased their prescribing of less-regulated painkillers by almost the same percentages. These alternative drugs are often less effective in treating pain and can also be more dangerous to patients than are Schedule II drugs.
The scrutiny has led doctors to ration pain medicine and ignore pain — necessary restraint in a world of diversion, enforcers would have us believe. “Even if you treat a patient with a terminal malignancy, it’s irresponsible to write a prescription for 500 Dilaudid tablets,” says Dr. James Winn, executive vice president of the Federation of State Medical Boards. “If the patient dies three days later, in a legitimate family the rest should be flushed down the commode. But sometimes a family member picks them up. We have a major drug problem in this country, and a lot of it comes from doctors.”
The DEA provides no detailed record of the amount of diverted prescription drugs it recovers each year. The agency also lacks comprehensive data on the origin of the medication it seizes. Thus, despite Dr. Winn’s assessment, there is little evidence to suggest that the narcotics which originate in doctors’ offices are the same drugs which wind up on the street. In fact, DEA officials concede that the majority of black-market narcotics originate from crime rings in foreign countries, where the drugs are manufactured illegally.
In February ODC director Gene Haislip retired after 17 years, leaving behind an agency known for its intimidation tactics. Haislip maintains that legitimate prescribing has not been deterred at all by his policies. “I don’t believe doctors would not prescribe because of there being a government report any more than they would not make money because they have to report it on their income tax,” he claimed confidently in a speech that outraged doctors.
Despite this shaky analogy, the IRS doesn’t destroy your livelihood, it simply takes a portion of it. A DEA fine, or even a protracted state medical board investigation, can threaten your medical practice, your income and the wellbeing of your patients. A state board ruling nearly ruined Dr. McNiel’s life. A family practitioner who ran an outpatient clinic in Mosheim, Tennessee, McNiel vividly remembers the day he was first targeted. “In 1992 an investigator with a badge walked into my office and said I was under investigation. She had a list of patients and said she wanted to look at charts. She dug around for a few days, then disappeared.” As McNiel puts it, her visit “encased the office in ice.”
Working for 15 years as a missionary doctor in Honduras and Nicaragua, McNiel had witnessed all kinds of injustices. But nothing could have prepared him for what happened next. More than a year later, he received an official envelope that contained a long list of charges: “The only thing it didn’t include was rape because they didn’t think of it. They make you out to be the scum of the earth. This is devastating to a person’s self-esteem.” The medical board brought charges against McNiel of nontherapeutic prescribing in the cases of ten patients, in addition to mentioning, without any explanation, “other cases too numerous to count.” The board, seemingly making no effort to conceal its arbitrary methods, also proposed more than $20,000 in fines.
National data suggest that such administrative intimidation is widespread. In 1994 state medical boards took action against 434 physicians for prescribing in violation of state medical practice acts, according to the Federation of State Medical Boards. However, the DEA, which often works with state medical boards, pursued only six criminal cases against doctors in 1994, according to information obtained from a database of justice Department files. Of these, only one doctor, from Puerto Rico, was found guilty.
The data from 1995 are similar. State medical boards took 392 actions against doctors for prescription violations. Only 11 cases were pursued by the feds that year, but there were no criminal findings. Two of the cases were dismissed because of minimal federal interest. The picture is the same at the state level. Last year in New York, the Bureau of Controlled Substances adjudicated 36 cases against doctors. However, 14 were civil cases, 14 had no charges issued and there was a smattering of warnings. Only one case was criminal.
Though these numbers seem small, each doctor works in a close-knit community. The flash of a badge can send shock waves through a hospital, or a state, and indelibly change prescribing habits. Some doctors in New York still shudder when they think of Dr. Ronald Blum, former deputy director of the Kaplan Cancer Center at New York University. In 1987 two state drug agents with guns and badges arrived at Dr. Blum’s office. Though Blum was not arrested, the agents threatened to slap him with three record-keeping violations. Eighteen months later, he received a letter of warning and the investigation against him was dismissed. Nonetheless, Blum’s “case” was used to bolster the statistics on state drug crackdowns.
The DEA, for its part, is quick to point out that its drop-ins on doctors are not arrests. An agency spokesperson explains: “It is important for people to realize that just because the DEA initiates an action, that doesn’t mean there’s criminal activity.” Which is just the point.
A lawyer in Austin, Texas who has defended numerous doctors from overprescribing charges describes the agency’s numbers game: “The DEA agents show up like a blitz, unannounced, in their little black jackets. They’ll scare the you-know-what out of a doctor and get him to surrender his DEA registration. They get instant results for their own data, and they make a quick bunch of money for the government, a $25,000 fine. But the doctor is screwed, because he doesn’t have his DEA number and can’t reapply for a year. When he does, the medical board says, ‘You gave up your DEA number. You must have done something wrong.”‘ It is a rare doctor who, when threatened with these sorts of grave charges, will refuse to surrender his registration.
The Mississippi medical board that heard McFadden’s case makes it clear that it hails administrative citations as victories. “We are number one in the country for bringing the most disciplinary actions per 1000 physicians,” says Dr. Thomas Stevens, the board’s executive officer. “I’m not proposing that we’re the best in the world. But it might be a sign that we do a good job.” Zealotry aside, the board’s complaint counsel, Stan Ingram, contends that the hearings are fair. “The board members trying the case play no role in the investigation and have little knowledge of the facts prior to the hearing,” he explains. In fact, a board member who is McFadden’s neighbor was permitted to recuse himself; thus due process was protected.
Nonetheless, McFadden’s son-in-law, Sean Milner, a Jackson, Mississippi based attorney, was appalled by the blatant conflicts of interest that riddled the hearing. For example, a state investigator collected the evidence and Ingram prosecuted the case; both are on the board’s payroll. “It’s the kind of justice you see in third world countries,” Milner says. “The judges are the investigators. They hire the prosecutor. They sit as the jury, plus referee the match. How many cases do you think they lose?”The board did not demonstrate that patients had complained. It presented no evidence that McFadden had harmed patients. The board did enter evidence that McFadden kept incomplete records. On several occasions, for example, he prescribed from home when his patients had crises, then failed to enter those prescriptions into his office records. Yet the board’s medical expert, a neurosurgeon, never addressed record keeping. Instead, he debated one of McFadden’s diagnoses, then testified that in his opinion, McFadden had treated his patients in good faith.
“I don’t want to use the term witch hunt, but I don’t know how else to describe the Board of Medical Licensure,” says a pharmacist who used to fill McFadden’s prescriptions. McFadden has begun the arduous process of appealing the board’s ruling.
It is now probably easier for a drug addict to buy black-market prescriptions on a street corner than it is for Dewberry to obtain a legal prescription for Vicodin. Meanwhile, there is no evidence that this policy has slowed real diversion, according to Dr. James Cooper, associate director of the clinical services research division at the National Institute on Drug Abuse. “It’s misleading to say that diversion comes only from prescribing. The research data aren’t available. No one knows the nature and extent of diversion from doctors’ offices, thefts, forgeries and smuggling.”
On paper, the DEA supports the use of opioids to treat pain patients. Its 1990 Physician’s Manual states that narcotic analgesics have “a legitimate clinical use and the physician should not hesitate to prescribe, dispense or administer them when they are indicated for a legitimate medical purpose.” In reality, the agency’s crackdown has been so complete that obtaining legal pain medicine has become practically an underground activity. On August 10, 1996 the Virginia Board of Medicine revoked Dr. William Hurwitz’ license, claiming he had overprescribed opioids. Many of his 220 patients, who suffer intractable pain and came from around the country to see him, have been unable to find new doctors. Several patients are being tracked by DEA agents; they speak to one another through Web sites. Two committed suicide because of the prospect of untreated pain. One recorded a final videotape, saying that his inability to find pain relief led him to seek death.
Dr. Hurwitz, 51, who obtained a law degree after he was first investigated in 1991, believes the state shouldn’t interfere with a patient’s right to treatment: “It is important to assess patient reliability. But I refuse to hold a moral screen over eligibility for medical care.” Although some of his patients had prior addiction histories, he issued them prescriptions for clear medical needs. “I wanted to make sure that people were as functional and comfortable as possible,” he says. “I felt the sheer force of numbers would protect us, by illustrating the need for pain treatment.”
That illusion has been shattered. A dozen of his patients have contacted Dr. Jack Kevorkian in Detroit, who receives several hundred calls a week from patients suffering from intolerable pain. In April, Susan T., a registered nurse and a former Hurwitz patient, sent Dr. Kevorkian her final set of medical records.
Years ago, she had been vital and athletic. But searing pain in her legs and buttocks from a botched gynecological operation and a subsequent back injury left her unable to get out of bed. Her only relief came from Hurwitz, who had her up and walking with Percocet and morphine. Since his license was revoked, she has called more than 15 doctors. Most refused to treat her after she disclosed her connection to Hurwitz.
This experience led Susan to Kevorkian. She explains, “I’m pushing hard to get financial things in order, to set up a revocable trust and have my house cleaned out of extra stuff so my husband won’t have to do it.” Of course, she could take another patient’s pain medication. But that would be diversion. “It’s plain illegal and there’s a line,” says Susan. “Many things are worse than death. One of them is losing the last of your dignity.”
Patients who need narcotics are often given less-regulated alternatives that are far more dangerous. Doctors who fear scrutiny rely heavily on antiinflammatory drugs such as arthritis pills, which can cause internal bleeding, liver damage and ulcers. One study has shown that these alternative medications kill 17,000 pain patients a year. Comparatively, the death rate from narcotic painkillers is “vanishingly small,” says Dr. Brian Goldman, a University of Toronto researcher who has studied prescription drug diversion. “There is no gastrointestinal bleeding, or kidney or liver failure. An accidental death could be from respiratory failure, but pain triggers you to breathe.”
Despite these facts, says Dr. Goldman, “the underlying logic is that death is better than addiction. ‘Narcotics can addict you. The alternative drugs can kill you. Therefore, we should prescribe those.”‘
Doctors fear drug investigators and with reason. A 1987 DEA study showed that in states with a triplicate monitoring system, only 21 percent to 35 percent of physicians bothered to order the required forms. They simply chose never to prescribe drugs that created added scrutiny. As Michael Troyer, director of the National Chronic Pain Outreach Association, puts it, “Doctors do not want to be identified as treating pain patients for fear of being investigated.”
In 1994 the DEA tried once again to augment its weaponry against legal narcotics. The agency drafted legislation, the Controlled Substances Monitoring Act, that would have required physicians to use government-issued prescription forms for all controlled substances. The Department of Health and Human Services deftly quashed the plan, noting that the DEA had submitted no evidence that the scope of drug diversion required such “drastic action.” This defeat signaled a subtle ebb in public opiophobia.
Support for pain patients has been growing, partly fueled by outrage over regulatory excesses. Since 1989 ten states have passed intractable-pain treatment acts, supporting the medicinal use of narcotics for patients with severe pain. In Oregon, Republican state senator Bill Kennemer underwent a bitter personal experience that led him to sponsor what came to be known as the Compassionate Care Act. In 1990 his wife was diagnosed with terminal breast cancer, and she was in excruciating pain. After her third day on morphine, her oncologist said he’d have to take her off it: “‘It’s addictive,”‘ Kennemer recalls the doctor saying. “I looked this guy in the eye and said, ‘What does it matter?’ He said, ‘I’ll lose my license if I don’t cut her off from morphine.’
“If you can’t eliminate the pain, you have to medicate it,” says Kennemer, who forged an alliance between the Oregon Catholic Conference, Citizens for a Drug-Free Oregon and the Oregon Right to Die group.
As patients secure their rights, doctors have also been emboldened to launch counterattacks. In 1994 the Florida Board of Medicine went after Dr. Katherine Hoover, charging that she had overprescribed controlled substances to seven patients. After a two year battle in which Dr. Hoover acted as her own lawyer, the appeals court chided the medical board for being “overzealous” and dismissed its case as “founded on a woefully inadequate quantum of fact.”
Hoover had moved to West Virginia to run her family’s farm and practice medicine. Given the Florida imbroglio, she was rigorous about documentation. She required her patients to sign a contract about the risks and benefits of narcotic pain relief, and she committed them to using a single pharmacy and not misusing their medication. However, it wasn’t long before she heard from the West Virginia Board of Medicine.
The State Department of Health and Human Resources had filed a complaint with the board regarding Hoover’s treatment of five patients whose pharmacy records had been singled out for review. The complaint alleged that she had prescribed in excess of her peers. Hoover points out, however, that she is the only internist in the area committed to pain management. Who, then, are her peers?
Hoover is defending herself once again. “I am not pretending to be a lawyer. I’m doing all of this because I’m a doctor,” she says.
She has filed a $10 million suit against the State Department of Health and Human Resources and the West Virginia Board of Medicine, charging them with extortion, conspiracy to defraud and discrimination under the Americans With Disabilities Act. “Patients have a constitutional right to life, liberty and the pursuit of happiness,” says Hoover. “How can you be happy when you’re in that much pain?”
Several doctors are now considering following her lead and filing lawsuits against their medical boards for discriminating against pain patients. As Frank McNiel puts it, “A lot of the people hurting are not the ones who live on Functional Street. You’ve had three surgeries, you’re on disability, you’re broke and living in a trailer. You don’t look like Mr. Yuppie, OK?” McNiel knows that if doctors want to treat pain patients, they may have to fight a court battle to do so.
In 1995 the Tennessee Board of Medical Examiners determined that McNiel had violated several provisions of the Tennessee Medical Practice Act and had a “co-dependent” relationship with his patients. The board labeled him an “impaired” physician, forced him to surrender his DEA registration and mandated he join a co-dependents’ support group. After a prolonged hearing process that resulted in more than $100,000 in legal bills (which his malpractice insurance paid until the verdict came in and he was fired), his attorney’s advice was simple: Put your head in the guillotine and let them drop the blade. However, McNiel appealed.
justice was served this past March. A state appeals court reversed and vacated the ruling, stating in its decision: “The conclusions of the board and its judgment are without necessary support of material and substantial evidence.” McNiel succeeded in blowing up the board’s opiophobic logic that when it comes to drugs, no proof is required: We would not accuse you if you were not guilty.
Despite his victory, McNiel still awaits a knock on his door: “I have a moral obligation not to ignore patients who come to me,” he says. “But I’m terrified every time I write a prescription.”
from the website drcnet.com
Chronic pain treatment
|One of the most serious problems in modern medicine is the under-treatment of patients in chronic pain.� More than 30 million patients suffer from chronic pain, and seven million of them cannot relieve their pain without opioids (narcotics), but only 4,000 doctors in the country are willing to prescribe them, according to the National Chronic Pain Outreach Association.� A New England Journal of Medicine editorial stated that 56 percent of cancer outpatients and 82 percent of AIDS outpatients were undertreated for pain, as were 50 percent of hospitalized patients with a range of conditions.Today’s massive denial of pain medication is a consequence of the social, regulatory and law enforcement climate created by the War on Drugs. Doctors can suffer loss of license or even incarceration, when the inevitable mistake of providing medicine to a dishonest patient who may be misusing or diverting medication occurs.� The climate has led to a situation in which most physicians are incorrectly trained in pain management and under- or non-treatment of pain is the norm.� Doctors who treat pain correctly typically must exceed the usual prescribed dosages, and in so doing draw the scrutiny of state medical boards and the U.S. Drug Enforcement Administration (DEA).� The DEA demands that doctors and pharmacies regularly provide them with records of every prescription for controlled substances that is written or filled.As Virginia physician William Hurwitz, whose case was featured on Sixty Minutes, explains, “The quasi-criminal liability imposed on physicians distorts clinical information and medical judgment, impedes the development of clinical expertise, undermines the ethical commitments necessary to medical practice, and leads to the abandonment, wasted lives, and deaths of patients with intractable pain.� Holding physicians liable for the misbehavior or dishonesty of their patients turns physicians into policemen and is, in principle, incompatible with effective medical care.”� Frank McNeil, a family practitioner in Knoxville, Tennessee, explains, “As doctors, we believe in people, but the government expects each of us to be an FBI unit. We’re supposed to trust no one.”The fate of pain patients in the “police state of medicine” is grim.� Day after day of constant torment drives many to depression or even suicide. Many patients receive enough medicine to provide relief for four hours out of the day, and have to decide which 20 hours of the day they will spend in extreme pain.� Frightened doctors sometimes “fire” patients, cutting them off from pain meds suddenly, thereby putting them at risk for shock or withdrawal.� And those patients receiving adequate prescriptions live in fear that their doctors could be put out of business by the government or frightened into cutting them off.� Former addicts as well as former prisoners are in the worst situation of all, being automatically suspect — but pain patients from these backgrounds need and deserve proper treatment nonetheless.|
Pain Medication: Will I Become Addicted?
Addiction is a Real Risk, But Most Painkillers are Safe When Used Properly
From Marc Lallanilla
Created February 12, 2009
About.com Health’s Disease and Condition content is reviewed by the Medical Review Board
A number of factors have contributed to the growth in pain medication addiction. The availability of prescription drugs over the Internet has fueled an international trade in illicit drugs, including many counterfeit drugs. Doctors are also writing more prescriptions for painkillers: In 1991, about 40 million prescriptions for opioids were written; in 2007, that number jumped to 180 million.
The drugs most commonly abused fall into four general categories: stimulants like caffeine, nicotine and methamphetamine; sedatives like alcohol, benzodiazapenes and barbiturates; opioids (including heroin and opioid painkillers); and other drugs, like marijuana and hallucinogens.
Opioids are generally prescribed to be taken orally, but abusers often crush the pills into powder and snort or inject the powder. Because some opioids, like Oxycontin, were developed to be slow-release formulas, snorting or injecting opioids can result in a potentially deadly overdose.
Addiction to painkillers is not, however, the same as a physical dependence, which is common when such medication is prescribed on a long-term basis. Tolerance, when the body naturally adapts to the medication, can happen with some pain pills, which means higher doses will be required to experience the same level of pain relief. Addiction includes both physical dependence (tolerance and withdrawl) and out-of-control use.
The process by which a patient becomes addicted to prescription drugs is the subject of ongoing research. Use of the most commonly abused, prescribed medication, including opioids, causes a release of dopamine in the brain. Dopamine is a neurotransmitter that affects the brain’s processing (among other things) of reward-seeking behaviors and pleasure sensations. The brains of some people are more prone to addiction for reasons not yet well understood.
Patients’ personal histories also help reveal those who are at higher risk for abuse of prescription drugs, including painkillers. Patients with a history of alcohol or drug abuse, for example, are more likely to become addicted to prescribed pain medication. Younger patients, too, are more likely to become addicted, as are patients who work in a healthcare setting, where access to prescription drugs is easier.
There is some controversy over the long-term use of opioids for managing chronic pain, but there is also a growing consensus that for most patients, a well-managed treatment program of opioid use is appropriate.
To minimize the likelihood of painkiller addiction, doctors are advised to stay up-to-date on advances in pain management, to make thorough examinations and take in-depth patient histories — especially regarding substance abuse — and to develop a strategy for monitoring patients when prescribing opioid pain medication.
Patients, too, have an important role to play in preventing addiction to prescription pain medication. Complete honesty with the prescribing doctor — including disclosing information about past alcohol or drug abuse — is critical to successful pain management with opioids.
Patients and doctors alike, as well as friends and family members, should be aware of the signs of prescription drug abuse and addiction. These include getting multiple prescriptions from more than one doctor, “accidentally” misplacing prescriptions or losing pills, stealing or forging prescriptions, and taking higher doses of medication than prescribed.
Treatment for addiction to prescription pain medication includes managed withdrawal and detoxification, therapy such as behavioral counseling and groups like Narcotics Anonymous, and medications including methadone, buprenorphine and naloxone.
“NIDA InfoFacts: Prescription and Over-the-Counter Medications.” nida.nih.gov. Aug. 2008. National Institute on Drug Abuse, National Institutes of Health. 26 Jan. 2009 <http://www.nida.nih.gov/infofacts/PainMed.html>.
Have you ever been on top of the world, ready for something great to happen? You may know what is going to happen and expect really great things. Would this make you hopeful? Let’s examine the definition of hopeful and see if we can clarify what this means… hopeful is defined as ” : having qualities which inspire hope <hopeful signs of economic recovery> 2 : full of hope : inclined to hope.” (Miriam Webster dictionary online). Ok, so let’s see what hope means, ” : to desire with expectation of obtainment 2 : to expect with confidence. “
Now, let’s see what the word hopeless means, ” a : having no expectation of good or success b : not susceptible to remedy or cure c : incapable of redemption or improvement 2 a : giving no ground for hope b : incapable of solution, management, or accomplishment “
Of these two words, which describes your life right now? A probing question for sure, it is designed to help us see where we are today, and we need to be honest when answering this question because it can change day to day.
My disease, lupus, would fit the definition of hopeless as in “no cure”. Today, I am also feeling hopeless, and in one of those moods where I feel like giving up. I am having these moods more and more lately. It scares me to be so down and give up.
You see, some days I fight the world with all my inner strength and hope I make a difference in the lives of those around me. Other days, like today, I feel like the pain is gaining and my strength is waning and I am useless to help anyone or anything. The pain is getting much worse, and I dare not complain to anyone because most people are so caught up in their own issues in life that they do not want negatives in their faces. I am such a negative, you know, voicing my pain. For some reason, pain seems to be taking over and I am incapable of handling it.
I think that the time is rapidly approaching where the decision may be taken out of my hands. I am not being a drama queen. I am just getting more tired working at “pretending” not hurting and being sick. Pretending can sap your strength. It is hard to put up a brave front.
I am not afraid of death. I understand the process, having worked as a nurse and also being a minister of God’s word. I am prepared. However, I am not prepared for the journey leading up to it. For some reason, I always felt that I would go quickly, like a heart attack or something. This slow, lingering, pain filled day after day was not how I expected it to occur. I guess I have no choice in how it happens. Dealing with it day to day and pretending to feel “fine” and continuing to do all that is expected of me whether I am capable or not.
Today, I am feeling much more heavier in the weight on my shoulders. I will make it a matter of prayer and pray that God will lift this dark shadow off of me and allow me to live in sunshine until the end. I also pray that he gives me the strength to endure all this pain.
This low is part of having a chronic and incurable disease. Lows are part of it, remission is too. Highs and lows, hopeful and hopeless, good and bad, blessing and malediction. I will trudge forward in this battle. Tomorrow will be a new day. For tonight though, I am letting go and giving it to God because I cannot carry it by myself.
Tomorrow is a new day and I am always hopeful that it will be a good one. For today, however, all I can say is I will pray for strength and more spoons.