Puget Sound - "Power Over Pain” Advocacy Day - Olympia, September 28th

Comic Dan Collins Cartoons (click for full size)

Pain Advocacy Day at the Washington State Capital

Pain, pain, pain... PAIN!

The largest lobbying event for pain suffers in Washington State history will be held Friday, September 28, at the State Capital in Olympia.

• This is personal to me.
• I'm a chronic pain patient.
• Without access to adequate pain control, I can NOT function.
• With adequate pain control, most of the time -- key word..."most" -- I lead a life which appears -- key word... "appears" -- to be normal.
• Practically speaking, with adequate pain control, most of the time I can work, live my life, spend time with my family, be in the world like everyone. Except when there is "break-through pain." (A technical term.) ...Then, things, and by things I mean me, stop working.

Here are some stats, some numbers.

After a page or so of the facts, I'll get back to giving you what this means in my life, how pain truly IMPACTS a person day-to-day, how desperately fucked up life can get when you live with pain month after month, year after year. Stick around... it's a bad-ass story. But first, the facts...

Here's what the American Pain Foundation says.

Seventy-five million Americans suffer from pain. Most fail to receive adequate treatment.

Highlights from the National Center for Health Statistics Report: Health, United States, 2006, Special Feature on Pain

More than one-quarter of Americans (26%) age 20 years and over - or, an estimated 76.5 million Americans - report that they have had a problem with pain of any sort that persisted for more than 24 hours in duration. [NOTE: this number does not account for acute pain]

Adults age 45-64 years were the most likely to report pain lasting more than 24 hours (30%). Twenty-five percent (25%) of young adults age 20-44 reported pain, and adults age 65 and over were the least likely to report pain (21%).

More women (27.1%) than men (24.4%) reported that they were in pain.

Non-Hispanic white adults reported pain more often than adults of other races and ethnicities (27.8% vs. 22.1% Black only or 15.3% Mexican).

Adults living in families with income less than twice the poverty level reported pain more often than higher income adult.

Adults 20 years of age and over who report pain said that it lasted:

• Less than one month – 32%
• One to three months – 12%
• Three months to one year – 14%
• Longer than one year – 42%

The Burden of Pain on Every Day Life

• The annual cost of chronic pain in the United States, including healthcare expenses, lost income, and lost productivity, is estimated to be $100 billion.²
• More than half of all hospitalized patients experienced pain in the last days of their lives³ and although therapies are present to alleviate most pain for those dying of cancer, research shows that 50-75% of patients die in moderate to severe pain.⁴
• An estimated 20% of American adults (42 million people) report that pain or physical discomfort disrupts their sleep a few nights a week or more.⁵

Commonly-Reported Pain Conditions

• When asked about four common types of pain, respondents of a National Institute of Health Statistics survey indicated that low back pain was the most common (27%), followed by severe headache or migraine pain (15%), neck pain (15%) and facial ache or pain (4%).⁶
• Back pain is the leading cause of disability in Americans under 45 years old. More than 26 million Americans between the ages of 20-64 experience frequent back pain.⁷
• Adults with low back pain are often in worse physical and mental health than people who do not have low back pain: 28% of adults with low back pain report limited activity due to a chronic condition, as compared to 10% of adults who do not have low back pain. Also, adults reporting low back pain were three times as likely to be in fair or poor health and more than four times as likely to experience serious psychological distress as people without low back pain.⁸
• An estimated 70% of those with cancer experience significant pain during their illness, yet fewer than half receive adequate treatment for their pain.⁹
• Painful knees and hips are common symptoms among older adults, with about 30% of adults 65 years of age and over reporting knee pain or stiffness in the past 30 days and 15% reporting hip pain or stiffness.

Disparities in Pain Care

• African Americans and Hispanics are affected by racial profiling for diversion and under-treatment by some physicians. This is compounded by a lack of research on pain across racial and ethnic differences,¹⁷ as well as cultural attitudes toward pain care. In one study, more than 80% of African American patients and 80% of Hispanic patients waited until their pain severity was a 10 on a 10-point scale before calling their health care provider or oncology clinic for assistance with pain management.¹⁸
• Elders are among the most undertreated for pain.¹⁹ Of the community-dwelling elder population, 25-50% can expect to suffer pain.²⁰ Among institutionalized elders, 71-83% report at least one pain problem.²¹
• Unfortunately, under-treatment of pain in the pediatric population is worse than that for adults, including elders. Only recently has the FDA required new medications be evaluated for efficacy and safety in the pediatric population. In one study, 65% of children younger than 2 years old went without pain medications compared to 48% of older children up to 10 years.²²
• Gender is also a bias in pain assessment and treatment. Women seek help for pain more frequently than men, but are less likely to receive treatment. Physicians often assume either that women can handle more pain or that they are exaggerating the level of pain they experience.²³ Women are more likely to be given sedatives for their pain while men are more likely to be given analgesics.²⁴
• Historically, the medical literature has portrayed women as hysterical and oversensitive. By extension, physicians often view women’s statements as emotional, rather than objective. In one study of patients with chronic pain, female patients were more likely than their male counterparts to be diagnosed with histrionic disorder, excessive emotionality, and attention-seeking behavior.²⁵
• Studies of VA patients show that the pain of veterans is significantly worse than that of the general public.^26,27 A higher incidence of pain in veterans was anticipated compared with the general public because of the greater exposure to trauma and psychological stress,²⁸ both of which increase pain and compound therapy.

Please click here for references.

So...

What does it mean?

What do all these statistics and study results mean? That's what bloggers do, right? Take something vast and make it personal.

Yeah. In a moment perhaps. First, if you've ever been in real pain, even for a little bit, you don't need me to tell you how you Just.Wanted.It.To.STOP.

Now imagine that round the clock. Waking you up. Unable to work. Unable to bend over and tie your shoes or put on a shirt? Sit up in bed without help? Unable to even wipe your own ass because you can't twist around without screaming from the freaking pain. How you like your quality of life now?

Welcome to chronic pain. Now say hello to pain medications; they are your friend.

Jesse's Story

With pain meds, I live a normal life. Ride my bike, drive my car, go to work (most days), and sleep through the night only waking up twice to take more pain meds (instead of 4-5 times a night, yelping.) I have a life.

My doctors and I worked for over seven years to get the precise set of medicines I use, correct. Along the way I went so far round the bend on some of the poorly adjusted drugs, the person in my body, based on reactions to improperly set meds and my own deep-triggered patterns, acted out behaviors so inappropriate I could have been jailed.

The drugs used to treat chronic pain act directly on the brain and biology at the core of one's self. They not only knock out pain receptors, but in the case of the supporting medications, they alter who we are as human beings. Who I am was changed for years because of the meds I was on.

Eventually I and my therapist figured out I wasn't the same person I'd been before he'd ever met me. I'd lost track years before and to say "I'd lost track" is misleading -- it was no longer "I" talking or knowing, but a different self created by the combination of medication and emotional & physical triggering loaded in my body and living my life; beat that shit with a stick. My own children knew something was "wrong with Daddy" but even they didn't fully grasp how badly I was off and neither did I. All I knew was how much I hurt. I didn't know I wasn't "me," even though I was doing things I hadn't done in 20-30 years. To say I wasn't myself... yeah, literally I wasn't myself or in control of my own body for about five years. I didn't even know I wasn't along for the ride till the first four years has passed.

Now there was more going on with me in the beginning than just poorly adjusted medications. But there usually is in chronic pain patients. That's why we're chronic pain patients. I was drinking heavily because the pain meds I was on weren't enough to handle how much I hurt, in every sense of the word. In Dec 2001 I had neurosurgery, leaving me physically in agony for close to a year. In May 2003 was the suicide attempt and its aftermath. In Nov 2003 I was in a major car accident, which still hurts every day still. All these confused the issue and left my doctors and I playing catch up.

Therapy resolved the issues with my past. I stopped drinking as we got some control over the physical and emotional pain. Eventually, as we lowered the dosage on the pain meds and the fog lifted, it slowly, painfully, over many months became clear that my actions for the last years had been massively inconsistent with the self I'd always known myself to be before the original work injury in 1999; that that "me" I'd been being was just off, and not in a good way. And further, that neither I or anyone around me had known.

It took a year, start to finish. First we had to find the right pain management doctor, an experienced physician specializing in pain management, in order to make a difference. Then I had to get on his schedule, which took months; there aren't many of them and their schedules are always full. Then more and more months; careful, painstaking, session after session, back-stopped by a clinical psychologist who knows me to my core.

After seven years of suffering, we changed my med package. My pain drugs, not just the narcotics, but the supporting medicines which allow both the narcotic and non-narcotic pain drugs to achieve their best impact, the sequencing, dosages, types and loading of these medications were changed, along with new meds being added. It took an entire goddamn year.

Changing my medicine package changed who I was and am. And surprise -- Jesse came back for the first time in almost five years. This all in the last year.

You think you know who Jesse "Doc" Wendel is? Listen... I don't even know some of the time. If I have an off day or week with my meds, I am not the same guy. Just under three years ago I passed a car between the HOV lane and the jersey barrier at 110 mph with six inches on either side screaming incoherent obscenities. My then 11 year-old son David was strapped in the front seat. Why was I angry? He just pissed me off; I don't know. This weaving through rush hour on Interstate-405 leaving Bellevue. A State Trooper pulled me over half a mile later as flat-out angry as I've ever seen a Trooper. Gave me the maximum possible non-criminal citation possible ($532 if I remember correctly, plus my insurance tripled for three years) and that only because I played the "I'm a paramedic" card. Originally the Trooper was going to jail me for reckless driving.

This is, by the standards of the last years, a tame story; I might have gone to jail for only 90 days. It was the Effexor we were trying; bad reaction. Effexor causes massive rage in me. How you like them apples? I stopped the Effexor within 48 hours; two days later I was fine. My point is there were many hit and miss attempts for years getting things right. Enough clearly messed with who I was, while others worked or seemed to maybe work, that over time we got much of the pain under control. More importantly, we eventually got to where my medical team and I sniffed just a whiff that perhaps the "I" who is Jesse wasn't really who I should be. That the drugs I was taking were altering me in some subtle way above mere pain control. That's when the conversation got interesting; my care required someone who knew precisely what pain management and they were about; a genuine specialist.

I love my primary care physician and the rest of my medical team. They are good, caring, talented people, quite literally the best doctors in their field in Puget Sound, in many cases, in the western United States. I'm not an amateur at picking talented people and in the field of medicine I know what I'm looking for. I have amazing people working to keep me healthy. None the less, it took an authentic specialist in this new discipline of pain management. A physician whose only practice is pain management to fix what was happening with me. We don't ask family practice doctor's to perform neurosurgery and we don't ask neurosurgeons to treat children for well-baby checks and back-t0-school physicals.

Pain management requires monthly care (or more) from a physician at the top of their game. It's that simple.

Pain Doesn't Have To Happen Any More

Pain drugs are a miracle. They save lives as surely as CPR, surgeons, cancer checkups, vaccinations and paramedics. And for enormously less cost in the long run as a body which hurts continues to break down physically and emotionally, and fails to be able to contribute to society. I haven't even mentioned the cost on the families of chronic pain patients.

By any objective standard, treating pain is by far the least expensive option possible.

Pain treatment just makes sense, not to mention being humane. We wouldn't let a puppy suffer like the State lets old people, children and the hurting suffer day and night, week and month and years. Yet in the name of a few bucks, the State of Washington wants to let people you know have their lives be destroyed in bitter agony. It simply isn't right.

Pain is a horrible monster. To be trapped in a body that hurts...

In their blindness, the politicians and administrators of the State of Washington are attempting to balance part of their budget on the backs of people on pain control. This is not just stupid. It's mean.

Last week I interviewed Dr. John Baumeister, D.O., Founding President, Washington Academy of Pain Management and widely considered one of the leading specialists in pain management in Puget Sound. (Disclosure: Dr. Baumeister in my pain management physician. He's the doctor who finally nailed my meds and along with my therapist, brought me back to being me.)

Dr. Baumeister

The State Legislature told the State Agencies to cut costs by "coordinating medical care."

Their first and primary effort has been to produce a guideline outlining efforts to cut costs by addressing the prescribing of narcotics for pain.

The Chair of the Agency Medical Director's Group, Gary Franklin, MD, MPH, and Governor Chris Gregoire have failed to listen to physician concerns over this new guideline.

By the committee's own report, 6,800 chronic pain patients will be required to obtain annual consults from pain management physicians. There are few pain management practices in the state and their practices are full. Thus the guideline represents constructive denial of care.

It will cause people pain.

Pain is a disease.

Pain works through causing your nerves to reorganize themselves, like plastic under a heat lamp, the plasticity of the organism flowing to allow new nervous pathways to form. These new pathways are not necessarily optimal for you, the patient. They are designed to let your body survive the injury and communicate "Hey, this hurts," long after the actual injury is gone.

In 1980 when I was training as a paramedic, pain management didn't exist. It is a new discipline. The federal and state governments -- like most people in power -- received their training of what works and what doesn't, long ago and aren't keeping up with current technique. They come from a time when people were expected to just "tough it up" and "be a man."

Except this is precisely the exactly wrong approach to pain management. In a burn, the very first step in burn management is, "Stop the burning process" which is often going on under the skin hours after the apparent heat is gone. The first rule of pain management is, "Stop the pain."

Pain begets pain in a vicious circle. Stopping pain allows people to heal.

If you're in Washington State or near, I encourage you to show up in Olympia at the State Capital on Friday, September 28 and help fight for effective pain control.

Further information on Pain Advocacy Day Friday, September 28 in Olympia is available from Dionetta Hudzinski, RN, MN (HCP) or (509) 966-1986.

Help stop the pain. Fight ignorance.