Category Archives: Chronic Pain in the News

WEGO Web Health Activist Awards Now Accepting Nominations

Trophy inside a glass case

Yeah, I have no idea what that trophy is in the picture.

But you can give something even better to someone worthy of a little praise: one of WEGO’s Health Activist Awards.

They’re looking for the best bloggers, Twitter users, speakers, and activists of all persuasions. You can nominate anyone you like, whether that’s a person (by name or Twitter handle), a website, or an organization.

Plus, there are a number of awards up for grabs, including Best in Show for Instagram, for YouTube, Twitter, Facebook, Blog and more.

Let’s give credit where it’s due! Who are you gonna nominate?

Photo credit: warrenski via photopin cc

Medical Marijuana: The Next Wave of Pain Patient Abuse?

medical marijuanaSo, yesterday, I’m scrolling through the email news alerts I save up through the course of the week as a matter of habit. And I see this one subject line that kinda pops out at me:

Marijuana Users More Likely to Abuse Opioids

Now, what the linked-to article actually indicates is that a recent study indicates there may be a correlation between medical marijuana use and patients who aren’t compliant with prescribed opioids.

As we all well know, there’s a huge difference between correlation and causation.

And maybe I’m just being paranoid here …

… gee, Annie, wonder why THAT would be … oh yeah. This. And this

… but I gotta wonder: is this the new front on the war on pain patients? The war on us, Dolls?

I confess: I am not really a fan of pot. It’s purely a personal thing. I just don’t like feeling high. I’ve smoked pot – and unlike our former president, I did inhale – a total of three times in my forty-plus years, and I didn’t enjoy the experience any of those times.

But it’s just a fact that it does help folks with chronic and cancer pain.

And it’s legal in almost half the U.S. states. (Although if you’re using it, even legally, even in those states? You’re still a criminal in the eyes of the feds. How’s that for a sensible policy?)

So, you’ll forgive me if studies like this give me … pause.

I take pause when recent past history tells me, quite clearly, we Dolls using opioids are automatically suspected as addicts and criminals, until we prove we’re not. (Have you ever tried proving the absence of something? It ain’t easy. In fact, I learned in law school – aka “The Dark Hole” – it’s nigh unto impossible.)

I take pause when something that clearly helps so many pain patients is linked to criminal behavior – because I know so many people, including so many policy makers and law enforcement officials don’t even understand the difference between addiction and dependence, so how can I trust them to know the difference between correlation and causation?

I’ve been taking a lot of pauses lately.

I don’t know what the answer is. That’s kind of the scary thing, frankly. Other than a targeted, long-term, intensive public education campaign, what are our choices, really? How many times can we say the same damn things over and over?

When are they gonna listen?

photo credit: Dank Depot via photopin cc

Did Sexism Kill These Two Women?

Be warned: I’m about to make you very, very angry. Possibly enraged.

Still with me? OK, deep breath in, let it out s-l-o-w-l-y … and let’s dive in to this effed-up quagmire of outrage.

Last September, Anna Brown died in a jail cell in Missouri, alone and in agonizing pain. We know this because we have footage from the prison security cameras. We also know that for three days prior to her death, Anna complained of extreme pain in her leg and went to several different hospitals seeking treatment and relief. In each case, she was treated for an underlying ankle sprain and released by providers who said there was nothing more they could do for her. Ultimately, she ended up in St. Mary’s Hospital emergency room, where she refused to leave after once again being dismissed. So the hospital had her arrested for trespass. She was carted off to the local lock-up, where she died later that day.

An autopsy revealed a blood clot had formed in her leg — which undoubtedly caused the extreme leg pain she complained of — and had worked loose and found its way to her lungs, where it killed her.

Both the hospital and the local police department have issued statements disclaiming any responsibility for Anna’s death. The police say there was nothing they could have done — how could they know she had a serious medical problem? The hospital, believe it or not, is saying the same thing:

“Unfortunately, even with appropriate testing using sophisticated technology, blood clots can still be undetected in a small number of cases,” according to a statement released by St. Mary’s Health Center on Thursday. “The sad reality is that emergency departments across the country are often a place of last resort for many people in our society who suffer from complex social problems that become medical issues when they are not addressed. It is unfortunate that it takes a tragic event like this to call attention to a crisis in our midst.”

Anna clearly did have some “complex social problems” — the MSNBC article linked to above recounts a horrible tale of escalating tragedy that started with a tornado and ended in that jail cell last September. But let’s be clear here: Anna didn’t die because she had “complex social problems.” She died because hospital after hospital failed to take her pain complaints seriously and a lethal blood clot went undetected.

And now let’s travel to the other side of the world and meet Elizabeth Howan of New Zealand, who died from undiagnosed colon cancer after complaining of severe abdominal pain for six years. Her family is, understandably, also outraged, just as Anna Brown’s family is. Ultimately, she was told her pain was “all in her head” and was even diagnosed “probably schizophrenic.”

I’ll say it again: colon cancer. No MRI or full body scan was ever performed.

I’ll be the first to admit that we may not know all the facts on either case. But I will state this categorically and without hesitation: I absolutely believe that in both cases, their pain complaints were either ignored or significantly discounted, and I believe that happened quite possibly solely due to their gender. One of them was written off as a schizophrenic. The other was possibly dismissed as some drug-seeking homeless woman and arrested.

In Ms. Brown’s case, the hospital’s hand-washing dismissal of their own culpability is particularly infuriating. Yes, blood clots are hard to diagnose in some cases. But the critical factor here was that the hospital’s employees discounted Brown’s pain complaints; we know that’s true because they had her arrested to get her out of the ER, and had they taken her complaints seriously, that would never have happened.

Now, let’s pretend these same two events happened to men. Would the outcomes be different? I submit they very well may have been, for one simple reason: when it comes to being taken seriously by our medical care providers, the two genders are often treated wildly disparately.

If two people — one male, one female — with the same demographics (age, weight, height, social status, etc.) come into the same ER complaining of pain in the same part of the body, and each rates the pain as “6 out of 10,” the man tends to be viewed as downplaying his pain, while the woman tends to be viewed as exaggerating her pain.

I don’t know if any studies have been done on this phenomenon — I hope somebody looks at it, because I suspect it’s far more rampant than even the anecdotal evidence I hear would suggest.

So, did sexism play a role in these women’s deaths? Would a more prompt response for either have saved their lives? I don’t know – but I know at least  Ms. Howan wouldn’t have died viewed by the people who should have been helping her as a schizophrenic, and Ms. Brown wouldn’t have died moaning alone in a jail cell.

And maybe I wouldn’t be so freaking outraged right now.

Fibromyalgia Symptoms Worse? Check Your Scales

Image of apple and hamburger on scales

Choose wisely . . .

A recent article, “Obesity Linked to Worse Fibromyalgia Symptoms,” caught my attention.

The article covers the findings of Mayo Clinic researcher Dr. Terry Oh, who discovered a link between obesity and increased severity of fibromyalgia symptoms.

“We see an association between body mass index with symptom severity and quality of life in patients with fibromyalgia,” says study author Terry Oh, M.D., of Mayo Clinic’s Department of Physical Medicine & Rehabilitation. “This was the first study to look at distinct groups of obese patients and determine how weight correlates with levels of symptoms and quality of life.”

Is anyone really surprised by this?

I mean, it might not be “duh”-worthy, but I can’t ignore direct experience.

See, excess weight has plagued me almost all of my adult life. As I struggled post-diagnosis to lose weight, my fibro symptoms did, in fact, get worse and ease off as the numbers on the scale rose and fell, respectively.

And I’m not alone, I know. According to the CDC, which lumps fibromyalgia into arthritis-related conditions, over 60% of adults in the US who’ve been diagnosed with some form of arthritis (including fibromyalgia among other conditions) are overweight or obese. That’s a lot of potential fibromites who are struggling with their weight and, presumably, the increased pain that comes with excess weight.

Of course, many fibro patients cannot exercise aerobically at the level needed to aid weight loss.

Note: I said “aid” — you cannot lose weight with exercise alone. Which is the good news for fibromyalgia dolls — the thing we can’t do isn’t the biggest part of successful weight management, but the thing we can do — i.e., get our eating under control — is key.

So what are we supposed to do about it, then?

Right: eat fewer calories, with more dense nutrition per calorie.

And yes, I know that’s much easier said than done. Hell, I’ve struggled with my own eating for years … sometimes more successfully than others. Lately, I had a weight gain that’s somewhat mysterious to me. I don’t think I ate that much … but yet, the scales don’t lie. To me, that conclusively establishes that it’s far too easy to eat mindlessly, instead of mindfully.

But now I’ve got even more reason to get my own eating under control: if there’s a chance that losing weight — even a little — will ease up these symptoms and the increased pain I’ve experienced since the weight gain?

I’m there.

Who’s with me?

 

Dangerous Panic Indeed: Why the Media is To Blame for Prescription Drug Abuse Hysteria

assorted pills of various colors on a blue backgroundUPDATE: There’s another new link at the end of this piece!

Maia Szalavitz is my new best friend.

Writing for Alternet, she lays out a sober, sane argument that the media insanity over prescription drug abuse is to blame for an increasingly adversarial “relationship” between doctors and chronic pain patients that echoes what I’ve been saying here for years. (Also here. And here.)

To sum up what we’ve both gone on record with:

  • Prescription pain medication abuse risk is low. Really, really low. How low? One percent risk of people over thirty with no prior history of drug abuse. For those who aren’t screened for prior abuse problems, the risk increases only slightly, to 3.27%. (That’s according to the government’s own data, by the way.)
  • The vast majority of Oxycontin abusers (by far, the chief devil in the almost-religious hysteria genned up over prescription drug abuse) do not  get Oxy through legitimate medical channels. Also, most of them have a prior history of drug abuse. How much is “most”? Eighty percent, according to Maia. (I don’t have specific numbers but that comports with the information I’ve received from law enforcement and addiction counseling providers.)
  • The rate of US citizens addicted to synthetic narcotics like Oxy, Vicodin, percocet, etc. has not risen in ten years. In fact, they’re remained quite steady at a very, very low 0.8%.

Why aren’t we hearing about this? Maia makes a compelling case that it’s about narrative. Simply, the folks who do get addicted to prescription pain meds don’t make compelling “innocent victim” stories.

I think that’s probably true. I think it also has to do with the powerful medical profession lobby, which is (rightfully) appalled and terrified over a growing willingness in law enforcement to prosecute medical professionals over prescription pain meds. They’re scared of losing their licenses — I would be, too — and so they’ve devolved into an adversarial approach to their own patients.

I saw this last year first-hand, in my frustrating experience with my new medical care provider and their in-house pharmacy. (I told that story in three parts — part 1 is here, part 2 here, and part 3 here.) Subsequent to that clusterf*ck, my pain levels increased pretty significantly, and my ability to walk and stand decreased substantially. Over the summer, I had two appointments with that P.A., and at each appointment she asked if I wanted to increase the dosage of tramadol back to 150 mgs twice a day. I said “no.” (She brought it up, and not in an accusatory way — in a suggestive, “are you sure because I’m OK with it…” way. I said no. I wanted to explore conservative measures for a few more months.)

Well, ultimately, those conservative measures didn’t work, and reluctantly, late last fall, I asked her to increase the dosage.

I didn’t even have to go in that time — she just called it in.

So, in the course of one year, we started with an easy, trusting relationship, immediately regressed to an adversarial one with a whole lot of suspicion, then suddenly back to trustful. And I know, without doubt, I am one of the lucky ones. Many dolls with chronic pain do not even get a chance to improve their relationships with their doctors. It starts off adversarial, it stays adversarial.

I wrote in one of those “This Doll’s Story” posts linked to above that I felt like I was being forced to prove I wasn’t an addict, when the logical, the sensible, the appropriate course of action is to assume I’m not until evidence suggests otherwise.

That’s true of all of us. And this is why we really need to work to educate law enforcement, politicians, and the medical profession about the reality of prescription pain abuse risk. We need to arm ourselves with these statistics and we need to share them, publicly and privately, with anyone and everyone involved in this issue.

Doctors need to lose the pain management contracts — they simply put the patient and doctor in opposing corners and set them both up for that confrontational relationship based on mutual distrust. One possible exception: when there’s objective evidence to suggest the patient is, in fact, misusing prescription drugs … but even then, that piece of paper isn’t going to do a thing to protect the doctor or prevent abuse, because an addict will simply find another way. Yes, the contract arguably gives the doctor legal cover to drop the patient, but they already have that by law. If they’ve done their jobs in keeping good records, nothing else will be required in a court or before the licensing board.

Doctors also need to stop looking at the chronic pain patient with suspicion. We’re not the enemy, folks. We’re just not. Law enforcement intrusions into medical decisions will not stop by clamping down on appropriately assertive treatment of chronic pain. It will only stop when we join forces and educate the police and the prosecutors and the politicians.

And the only way we can do that is to start with statistics, and then speak UP.

UPDATE: There’s another excellent article on how the war on drugs became the war on chronic pain patients over at Huffington Post. Hat tip to reader Shannon from Nip Pain in the Bud for alerting me to it!

 

URGENT: Call to Arms for All Chronically Pained Dolls – A Sister Needs Our Help

You will not read a single blog post, Facebook status update, tweet, or news article today that’s more important than what you’re about to read right now. I promise you that.

This is a call to arms to all women with chronic pain, and every single person out there who knows and cares for them. A woman in Vermont needs help desperately.

The stakes couldn’t be higher. She is quite literally on the verge of being out on the streets at the age of 49, where she will have to deal with chronic pain, a recent traumatic injury, harassing debt collectors, joblessness, and hunger – not to mention the grave physical danger that women face every single day on the streets of our cities – alone.

This post is my attempt to prove to her, and to all of us, that she is not alone.

Meet Your Sister

Her name is Alexandra Jarrin, and she’s a remarkable woman.

Last fall, when Senator Bernie Sanders made his courageous stand for all the millions of unemployed Americans everywhere, Alexandra organized the “Letters to Bernie” campaign, where she encouraged others who were unemployed like her to send their written stories to the Senator’s office.

She became a face for a group that’s generally thought of as faceless by our more fortunate fellow Americans, and her efforts were highlighted on major media outlets like the New York Times, CNN and Huffington Post.

Then she lost her housing. She’d been staying with a friend, but that friend’s landlord issued an ultimatum to the friend: “Kick Alexandra out, or get evicted yourself.” With the generosity of friends and strangers, Alexandra has been able to stay in hotels since then but won’t be able to do so past today, as of the publication of this article at Huffington Post.

Alexandra is coping with a major knee injury, along with …

High blood pressure, diabetes, Fibromyalgia, Hyperparathyroidism, gallstones and kidney stones and God knows what else they are going to find. The worst thing I ever had to deal with was several kidney stones and the treatment for them.

Like the vast majority of unemployed Americans, Alexandra wants to work. She’s applied for over 3,000 jobs in the three years since she lost her job. Her car payments are late, and the lender is hounding her several times a day. Without that car, she has no hope of finding a job or getting to her doctor’s appointments.

Like the vast majority of unemployed Americans, Alexandra is not looking for a handout. She doesn’t want to get rich off public funds. Alexandra’s goals are a little less lofty: to find a job, to locate a safe place to live, and to make it to her fiftieth birthday later this month.

Senator Sanders’ staffers said they’d helped her, but it turns out what they did was tell her what she already knew: the names and telephone numbers of local agencies in her area.

My readers know I’m familiar with Alexandra’s situation, because I’ve lived it all too recently. Now that I’m climbing back on my feet, what I want most in this world is to win a lottery so I can turn right back around and help people like Alexandra, the way others helped me.  Barring that, what I want is for each and every one of my sister chronic pain cope-rs to join me in helping Alexandra with $5, $10, $50, or whatever they can spare. (I’ve sent $50. You send what you can.) I don’t want one more woman to lose almost everything because of chronic pain, the way I did.

Conventional wisdom says “Don’t give money to individuals. If you want to help, give it to reputable agencies.” I’m here today to tell you that this advice, however well intentioned, is wrong. It’s wrong for right now, at any rate. In this environment, yes, agencies are hurting. But people are skating the line between survival and not-survival.

The stakes could not be higher. Nothing else you read today will be as important as this.

I’m here today to beg you to help an individual. To help this individual. And if you’re not comfortable with that, then by all means go out and look for an Alexandra on the street corners in your own hometown. I promise you, you’ll find her.

And when you do, help her. Give her money. Get her a hotel room for a night, if you can. Buy her a phone card or a meal or a tank of gas. Help the person right in front of you.

Alexandra is the person right in front of me.

How to Help Alexandra Right Now

Alexandra can receive PayPal transfers at ajinvermont@gmail.com. If you want more information about her, to put your mind at ease before you send her money (perfectly understandable), Michael Thornton from Layofflist.org (who wrote the two HP articles I’ve linked to in this post) has offered to serve as a point of contact. You can write to him at mike@layofflist.org.

Spread this link to everyone you know. Tweet it, put it on Facebook, write it down on a sticky note and put it under the windshield wipers of every car in the lot of the local mall. No, it won’t solve the larger problem. It won’t save every Alexandra. But it will help save this Alexandra. And nothing else you do today will feel that good.

If you just cannot spare $5, how about volunteering your time? I don’t know what she needs besides money, but will attempt to find out.  When I was going through what Alexandra is dealing with now, I know that people who offered to do things – scour Craigslist ads for housing opportunities, for instance – were truly angels in human form to me.

The stakes could not be higher. Nothing else you read today will be as important as this. Alexandra could be any of us. She is any of us.  Please help her however you can.

 

 

 

 

 

Link Between Ultra-Flexibility and Migraines Discovered

Picture of a Woman With a Migraine

Migraines: Not your ordinary headache ...

“Hi, Annie. I’m Migraine. Nice to Meet You …”

I never had migraines until last summer. After a particularly stressful series of events one day, this blinding, throbbing pain began tormenting me.

I took three Excedrin, crawled into bed, turned out the lights, and covered my forehead and eyes with a cold wet cloth. A few hours later, the pain had faded enough to allow me to get vertical again. It happened two more times last fall, each incident separated by a few months.

Then last week, my eleven-year-old daughter, in obvious distress, began reciting an all-too-familiar list of symptoms—her head hurt, she felt sick to her stomach, light hurt her eyes, and sounds were too loud.

Before these personal experiences, I didn’t really give much thought to migraines as a source of chronic pain, I confess. Now, I’m in tiger mama mode, researching juvenile migraines and scheduling a visit to my daughter’s doctor.

(There’s another post for another day: why do we race into overdrive when it’s our family members in pain, but we often put up with our own pain?)

Stretchy Body, Stretchy Blood Vessels?

And that’s how I found this piece from MSNBC.com: “Ultra flexible? You’re at triple risk for migraines” (Reuters). It reports on a recent study performed by Dr. Vincent Martin, professor at Ohio’s University of Cincinnati College of Medicine, which showed that women with joint hypermobility syndrome are up to three times more likely to experience migraines than their less flexible counterparts.

Joint hypermobility syndrome isn’t really a pain condition—it normally requires no treatment. (A more severe form called Ehlers-Danlos syndrome is a whole ‘nother kettle of fish.) But it can be an indicator of what Martin calls “stacks” of other medical conditions that do cause pain, such as fibromyalgia, chronic neck pain, and sleep disturbances—and, apparently, migraines.

Martin’s working hypothesis was that JHMS, marked by “extra-stretchy” collagen in joints, could also be an indicator for increased risk of migraines. This is because the collagen (a crucial component in body structures like joints and blood vessels) should be overly elastic throughout the body. And if that’s true, the collagen in the blood vessels would also be overly elastic—and that, researchers already believed, is associated with chronic migraines.

Martin’s Findings: 75% Increased Risk of Migraines in Hyper-Flexible Women

Martin expected an increased risk but the actual results surprised him. The rate of migraine occurrence in the control group was 43%, but in the test group, the rate shot up to 75%. After factoring in age and medication usage, this figure translated to three times the risk for migraines for women with joint hypermobility syndrome, who also experienced migraines more than twice as often, with an increased occurrence of aura.

Researchers had long suspected a link between JHMS and migraines. Dr. Blair Grubb, a professor at the University of Toledo Medical Center, said “It’s one of those things where everybody knew it, and somebody just got around to publishing it.”

Of course, as we know, that “publishing” part is pretty critical in order to support further studies and advances in treatment.

Migraines and Trauma Dolls

Do you have migraines? Tell me what you do to make yourself feel better in the comments!

I’m especially interested in hearing from moms of young children who experience migraines.  I got a few great tips from Twitter the other day (I’ll be asking Princess’s doc about Maxalt, and we’re looking into nutritional changes as well—thanks, tweeps!) but information is power, Dolls, so let’s share!

Actavis Announces a Voluntary Recall of Transdermal Fentanyl 25 mcg (UPDATED)

2D structure of fentanyl
Image via Wikipedia

UPDATE (10/28/2010): Was just alerted to the following additional information provided by Actavis, the drug manufacturer involved in this voluntary recall. This was included in an email update from the American Pain Foundation:

“We have no interest in adding to the discomfort of patients who are using this product to help alleviate moderate to severe pain however, and therefore, as an accommodation to consumers/patients, if they have an Actavis 25 mcg/h Fentanyl patch, we will work with them on returning the product”, was included in the correspondence from Gerard Farrell of Actavis Corporate Communications.

Individuals who have these lots in their possession and want to return their 25 mcg/h Fentanyl patch can call # 877-422-7452 and an Actavis representative will assist them with their return.  They have also posted helpful information to their website: www.actavis.us. Look at the lower right corner of the home page for “Fentanyl Recall Information.”

Reminder: For a listing of the affected lots, visit the Actavis website: http://www.actavis.us/en/Fentanyl_Recall.htm

Just got the following in my inbox courtesy of the American Pain Foundation. Read carefully, and follow the instructions if you’re affected by this:

Actavis, a generic drug manufacturer, issued a voluntary recall of 18 lots of their 25 mcg Fentanyl patch on October 21, 2010. One lot was found to be defective, causing the medication to release too quickly into the bloodstream. This lot, along with 17 others, has been recalled. According to Actavis, the Food and Drug Administration (FDA) and wholesale and retail pharmacies have been notified.

For a listing of the affected lots, visit the Actavis website: http://www.actavis.us/en/Fentanyl_Recall.htm

Regretfully, the company has failed to require the public to return their affected lots. As of October 25, the company’s website states, “Consumers are not being asked to return any product as this issue does not pose a threat of a serious injury or death.” Rapid absorption could lead to unintentional side effects such as increased sedation, nausea, vomiting and slowed breathing. The American Pain Foundation strongly urges Actavis to reconsider its first advisory and extend the recall to consumers.

Individuals who have these lots in their possession should:

  • Contact Actavis and demand a consumer recall and proper replacement. According to the FDA press release, Actavis has operators available to help customers, health professionals and consumers with the following information:
    • Medical Issue/Adverse Event/Product Questions:  1-877-422-7452 (24 hours/day, 7 days/week)
    • Return/Reimbursement Questions:  1-888-896-4562 (24 hours/day, 7 days/week)
  • Contact the FDA and report your experience. Adverse reactions or quality problems experienced with the use of this product may be reported to the FDA’s MedWatch Adverse Event Reporting program either online, by regular mail or by fax. Online: www.fda.gov/medwatch/report.htm
  • Contact the pharmacy where this medication was filled and report that you are in possession of an affected lot.
  • Notify the health care provider who writes your pain medicine prescriptions and ask for guidance.
  • Notify your insurance provider should a new prescription be written, so that it will be covered.
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The Chronic Pain/Prescription Drug Bad News Tsunami

Picture of Large Ocean Wave Breaking Near Shore

There’s a retrenchment going on in the war on chronic Pain (CP). I’ve noticed it with some dismay over the last several months or so, and this week it finally hit me: folks, we’ve got a full-blown insurgency on our hands. Or counter-insurgency. Whichever? I guess it depends on your perspective, as does so much these days. Are we — the ones calling for more assertive treatment of CP, including better access to pain medications — the insurgents? (Personally, I’ve always been fond of “partisans.” Or “Resistance.” I look good in a beret.)

Well, whichever, indeed, because labels don’t mean a damn thing when we’re getting hit by the mass media tsunami. And how could you have missed it, really? Don’t you know? Prescription pain drugs are evil!

Sigh.

Am I overreacting? Consider the items that popped across my Google alerts just this past week:

  • Pain Medicine News: Study: PCPs Often Underestimate Opioid Abuse Risk — free log-in required, and it’s worth it, honestly. (I’m kind of in awe of this one. Despite numerous studies and statistics to the contrary, we’re going to conclude that MOST — that is, a majority! — of CP patients are at moderate risk of addiction to opioids if prescribed them. Uh-huh.)
  • News & Observer: (NC) Sheriffs want lists of patients using painkillers (Oh, yes. That’s a brilliant idea. Yep, no need to worry about local government overreaching or privacy implications with this plan. At all. And like the study in the item above, it comes from my home state of North Carolina. Whiskey-tango-foxtrot, Tarheels?)
  • London Free Press: Police-doctor crackdown eyed in fight against Oxycontin scourge (Great. Now it’s a “scourge.” Hyperbole much, LFP?)
  • And, drumroll please — my favorite, from something called “the Salem News” (Oregon/Pacific NW): “Pain classified as a disease? Please, give us a break.” A lovely little op-ed full of sunshine and roses for the CP’d population from a self-described “Activist for Victims of OxyContin” named Marianne Skolek (inappropriate capitalization is hers, not mine). She’s also a nurse and a paralegal. (Not sure how that works.)

It’s enough to make a sane CP blogger/activist (note the lack of capitalization, Marianne?) get a little depressed. Excuse me – a little more depressed, since everyone knows we’re already, all of us, bawling buckets of messiness, right?

LORD. I’ve been rolling my eyes all week, so hard that I’ve got a perpetual headache. And – what’s this, Marianne? A CP patient experiencing pain who doesn’t run to the nearest pharmacological stewpot?  Yeah, that’s right. Guess what. I’m not alone. Guess what else? It’s MOST of us who don’t overmedicate.

Except people like Marianne and the sensationalist authors of the above pieces and the scowling big-daddy sheriffs of North Carolina don’t want to see that. They want to see the scourge, the tsunami. Sure, they’ll wrap it all up in soft, caring words but underneath it all is the sense of disdain and superiority over anyone weak enough to want to take a pill to alleviate their CP.

And at the heart of that, ladies and gentlemen, is the blessing of never having had to deal with it yourself. Once you cross over into this great land of All Pain, All the Time? You are changed. Perpetually and inexorably and profoundly changed.

I wouldn’t wish it on anyone. Not even Marianne or the sheriffs. Now, it seems as though Marianne had a daughter who died from an Oxycontin overdose. That’s tragic, and incredibly sad. It should not have happened.

Oxycontin is a drug. It’s a potent one, to be sure, but it’s not the devil. Nor are the people who make it, nor are the people who take it.

You want a devil? Look around at the them vs us world you’ve created, every time you urge the public to believe that prescription pain medication will absolutely, definitively kill them, no doubt.

Look long and hard at the prosecutions of good and caring doctors who – horrors! – use the medications as they’re supposed to be used: to relieve their patients’ pain.

Hell, just look at the criminalization of drug use — not dealing, mind you but merely use! We’re going to put people whose only crime was using a drug in jail. No, that makes no sense to me. You know who belongs in jail? Murderers. Rapists. Thieves. Politicians who steal or take kickbacks. Dealers. You know who doesn’t? Drug users or abusers. That? Is a sickness. Want to know how I know? Because a lot of really smart people got together and SAID SO.

Yeah, that’s what our overcrowded prisons need: throw a bunch of mentally ill people in GenPop because they’re mentally ill.

But. All right. The people have apparently spoken. (Though I’m not giving up on that yet.) Let’s just put that aside for a bit. What’s going on here, in this tidal wave of Crisis! Prescription Medication Abuse (can’t you just see the blazing CNN graphic and hear the specially-composed Intro of Doom now?), is something I’d thought reasonable people had put to bed awhile back:

We are not required to live our lives in pain. We’re just not.

But if this scare-mongering continues, then – well, as much as I hate the role of Cassandra, mark my words, folks: We will none of us have access to the prescriptions that can save our lives.

So, it’s Pain Awareness Month, you may have heard. Isn’t it time we all spoke up? Shouldn’t there be someone saying this stuff in a more public forum? I wrote to a contact at APF to share that Marianne op-ed this week. The response I got indicated that they just don’t even respond to her anymore. I can’t say I blame them. She’s obviously a little self-important and if the best platform she can manage is the “Salem News” website, then – well, whatever.

But shouldn’t the din of voices clamoring about “Pharmageddon” and “sheeple being led astray” (Oh, God, can I just make a new rule right now? No more made up words. And if you do make up a word, it has to at least be clever. “Pharmageddon” and “sheeple”? Do not qualify) — shouldn’t there be at least an equivalent counter-chorus? Somewhere?

It’s enough to give a CP girl a headache.

And note: I’m not even reaching for the Tylenol(tm).

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American Pain Foundation Hosts Virtual March on Washington, Launches 10,000 Voices Campaign

Many Lit Taper Candles in the Night
In recognition of September’s designation as Pain Awareness Month, the American Pain Foundation (APF) announced yesterday the start of an online Virtual March on Washington which will include the launch of the 10,000 Voices campaign.

Designed to highlight the need for access to timely, appropriate pain management and medical care for the more than 76.5 million Americans who deal with chronic pain, the Virtual March and 10,000 Voices campaign aim to provide the resources and tools for people to raise awareness of pain issues and pain management, advocate for continued improvements in pain policy, and provide a gathering place for people to share their personal stories on pain.

“Although provisions of the National Pain Care Policy Act of 2009 were signed into law last March, we still have a long way to go to bring pain to the forefront in every community throughout the country,” said Will Rowe, chief executive officer of APF.  “We must seize this opportunity to come together and join the movement—people in pain, family members, caregivers and members of the medical community; build on the momentum of the bill; dismantle the barriers preventing better pain management; and conquer pain together.”

The Virtual March

The Virtual March runs from September 1 through September 30, 2010, and will feature:

  • the launch of the 10,000 Voices campaign—an online opportunity for people in pain, their caregivers and health care professionals to record and share their individual stories;
  • a letter-writing campaign with examples of letters on individual topics to send to lawmakers and other key officials;
  • condition-specific videos examining the challenges of life with chronic pain;
  • the Advocacy Toolkit, to help plan local awareness activities and local media outreach projects; and
  • an online guide to effective use of social media tools (Facebook, Twitter, blogs) in chronic pain advocacy and public education efforts.

“The Virtual March offers the tools to unite, empower and rally those who care about people living with pain and encourages them to be part of a movement that is making a difference in pain policy and pain management in a way that is accessible from your home or office. People can choose to participate in one activity or all,” said Rowe.

To learn more about the Virtual March and to find or post an activity that is happening in your area, visit www.APFActionNetwork.org.

American Pain Foundation Resources

APF also encourages people in pain and their caregivers to read and consult the following free publications available at the APF website:

  • “Access Matters: Making Sense of Health Coverage” provides an overview of health insurance and how to maximize your coverage;
  • “Pain Resource Guide: Getting the Help You Need” helps chronic pain patients empower themselves to create an assertive treatment plan;
  • “Treatment Options: A Guide for People Living with Pain” explains medications, psychosocial interventions, complementary approaches, rehabilitation therapies, surgical interventions and more;
  • “Target Chronic Pain” provides easy-to-use practical tools for pain assessment, management and communication.
  • “Pain Monitor,” a monthly e-newsletter, highlights news, legislative updates, research and resources for people living with pain.
  • “Exit Wounds: A Survival Guide to Pain Management for Returning Veterans and Their Families” offers veterans and their families vital information for their pain journey.

PainAid — An Online Support Community

PainAid is APF’s online support community featuring regularly-scheduled live chats each week, 100+ message boards, and “Ask-the-Expert” sessions moderated by licensed health care professionals. Membership in the online forum is free for chronic pain patients and their caregivers and loved ones. Topics range from illness-specific pain, traditional and complementary treatments, to depression and family matters, as well as financial/legal issues such as disability and workers compensation.

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