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LETTERS FROM WAKE ROBIN FARM

The Understandable Panic of Those in Chronic Pain

An NBC online headline the other day breaks my heart: Chronic Pain Sufferers Are Scared by Ohio’s New Opioid Rules.

In a nutshell, the state of Ohio is trying to restrict the flow of painkillers in order to help fight the plague of opioid abuse. Those who take the pills for chronic pain are of course freaking out, blaming the government and people they see as the actual addicts for their dilemma.

I feel terrible for them, but this is a false construct, setting up the issue as a three-way fight between government regulatory agencies, the doctors, and the patients dealing with chronic pain. The government tries to stop the problem by turning off the tap of opioid drugs, the doctors fear getting in trouble with the government and try to develop strategies to defend themselves from “addict types,” and the people in chronic pain rail against everyone who they perceive as conspiring to keep their drugs from them, and this includes those they characterize as the “real” addicts.

Having suffered the difficulties of getting off of these drugs myself, I feel like a lone voice, crying in the wilderness. The question is not, are you an addict? It’s are these drugs you’re on helping or hurting you?

Of course those who are addicted (okay, call yourselves dependent if it makes you feel better, but your brain doesn’t know the difference) insist that they can’t even begin to continue with their lives if somebody doesn’t prescribe them these drugs. That’s right, because they’re addicted, and their brains, without the drugs, will rebel.

A crucial fact that nobody talks about much is something called Hyperalgesia. It means that while the drugs initially knock back the pain, eventually, the person taking them actually becomes more sensitive to pain. Got that? It makes the pain worse. This is why opioids are not considered a viable, longterm option for chronic pain.

All the energy that will go into these folks desperately trying to make sure they can still get their drugs should actually be applied toward figuring out a program of getting off of them. Rather than now shunning them as addicts, the doctors who prescribed the drugs in the first place should be helping them, not just sending them off to so-called “pain clinics.” A common line is, “I’m not comfortable prescribing these to you anymore.” Apparently they were comfortable enough with the prescription to get the person hooked in the first place.

I know about pain. I’ve lived through this. I’m not on any of these drugs anymore and I’m not in pain. If you want the gory details, it’s all in my book, Accidental Addict. I should warn you that one reviewer claims I’m not a real addict, I guess because once I went off, I never relapsed. But that doesn’t mean I didn’t have to hang in there and suffer through the months and months of withdrawal.

Also, check out Physicians for Responsible Opioid Prescribing, a group that has been trying to get to the root of the problem by getting doctors to understand that, despite what they’ve been told by the pharmaceutical companies, opioid painkillers can be highly addictive for anyone.

Do I have to remind you that the drug companies do not have our best interests at heart? They want us addicted. What better way to sell the maximum number of pills? Read More 
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The Death of Prince

When I heard Prince had been found dead, I right away thought: drugs. No, not necessarily a heroin overdose, but when people in ever greater numbers are dying too young–found dead—and there’s been no talk of going downhill from cancer, no car accident, well, the involvement of prescription drugs is certainly what springs immediately to my mind.

True, Prince’s autopsy report hasn’t yet been made public, but it wasn’t long before Percocet was mentioned, and today we get the story that Prince died just one day before a famous addiction specialist was scheduled to fly to his aid. This is revealed as a tragedy of timing, as if he missed being saved by just one day.

But it’s not that simple. When it comes to getting off narcotic painkillers, money’s little help. As I suffered through withdrawal coming off of Oxycodone after my knee replacement surgery, I’m sure a sympathetic doctor holding my hand and encouraging me would have been better than the help I got—which was basically nothing—but in the end, it’s all down to the addicted patient. The most famous, high-priced doctor around pointing out you have to stop taking the drugs will not spare you the horrors. Doctors don’t have a whole lot of tricks in their bags for helping people deal with this addiction—never mind that in so many cases the addiction began at the prescription pad of some fellow physician.

What they don’t talk about in most addiction stories is just how long a person has to feel perfectly horrid long after they’ve stopped “using.” Is this because so few people ever actually get off this stuff and have the story to tell? Even in tales of recovery, it seems to me the physical difficulties are downplayed. I wonder if it’s possible that addicts feel they’ll sound whiny if they talk about this. Maybe they think others wouldn’t be sympathetic because they are, after all, addicts?

Maybe that’s the way I felt before I went through this myself—as judgmental as the next person. Now I have nothing but the sincerest admiration for anybody who can get themselves off these brain-damaging drugs and stay off. Since I have nothing to feel guilty about, I have no problem speaking up and pointing out that withdrawal is truly hell, and our medical system better get its act together in a hurry to deal with restrictive new prescription protocols for opioids, and all the people who are soon going to be ushered off of their painkillers and into this horrid illness.

I’m hoping my upcoming memoir—Accidental Addict--will help shed light on all this. I’ve been receiving some wonderful pre-publication endorsements, including this one from Dr. Andrew Kolodny, Executive Director of Physicians for Responsible Opioid Prescribing: "I hope this timely book gets widely read. Linda Crew’s experience has been shared by millions of Americans and many have lost their lives. The medical community has accidentally created an epidemic of addiction by overprescribing narcotics, and now everyone, including prescribers, needs to know how easily these drugs can destroy lives."

So sad about the loss of the talented and popular Prince, but for every famous person who dies this way, there are thousands who die without headlines, becoming only another statistic in the CDC’s alarming new reports of the rising rates of overdose deaths from prescription drugs.  Read More 
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DETOX LITE

The other night I woke up at 2 a.m. in the grip of yet another wave of drug withdrawal symptoms. Yes, appalling. Eighteen months one hundred per cent “clean” of the Oxycodone I took for pain after total knee replacement surgery, and this monkey is still on my back. Waiting for whatever relief ibuprofen might provide, I sat in the breakfast nook and leafed through the latest New York Times Review of Books, hitting on a short review of ALL FALL DOWN, the story of a suburban mom’s addiction to painkillers. Confession: my thoughts were not kind. Great, I thought. Author Jennifer Weiner gets another best seller, and I’m just the real live woman who has to actually live through this crap.

I downloaded the book the next morning and started reading, grateful at least for the distraction of my intense interest in how Weiner was going to handle this hot button topic. Weiner has a huge fan base. People love her books. Who am I to in any way criticize her style? I set out only to see whether she got detox and withdrawal right.

This book may give a few of her readers pause about their own history of substance abuse. She hits hard the notion that yes, you can look like a perfectly nice lady in the checkout line at Whole Foods and still be a drug addict. By the end, we’re supposed to give her character, Allison Weiss, credit for finally admitting that she is, in fact, an addict, and at a twelve step meeting she is among her own kind.

But Weiner may not understand the degree of denial operating in women who are secretly hooked on such opioids as Oxycodone, Vicodan and Percocet. She has Allison swallowing uncounted handfuls of pills, up to 300 mg of Oxycontin daily. This is truly a horrific dose. My own opioid receptors were thoroughly messed up, in contrast, by just 60 mg of Oxycodone taken for twelve weeks. The more common path to addiction for people originally taking these drugs by prescription is much less flamboyant than Allison’s, more darkly insidious. People agonize as they slowly increase their doses to get the same pain relief they had received initially, and to avoid going into the hell of withdrawal that comes with tolerance after extended use. I personally know women who would read ALL FALL DOWN and insist that they are not a true addict like Allison because—hey!-- they are taking their pills, not nearly so many, in what they desperately want to see as a carefully controlled manner. And look! Their doctors are still prescribing it. Doesn’t that mean it’s okay? They will fight the label “addict” all the way, as if what you call it makes any difference to a hijacked brain.

Weiner knocks her lights out endlessly detailing Allison’s stressful life situations--garden variety middle class mom stuff--as the reason she “uses,” apparently trying to persuade the reader to understand and sympathize, then makes the mistake of creating a character who is essentially mean-spirited and apparently was so before she ever got into trouble with drugs. Her name-brand-laced depiction of her lifestyle has that bragging-while-complaining quality that grates from the beginning.
Truly offensive are Allison’s antics in rehab, which seem designed as a set piece for the movie Weiner might like to see come of this. Hey kids! Let’s put on a show! Let’s write hilarious drug words to the songs from THE SOUND OF MUSIC!

Please. I have a hard time believing people in withdrawal feel like putting on shows.

Yes, I know anything can ultimately be the subject of humor—tragedy+time=comedy—but the epidemic of opioid abuse and addiction is happening right now, and it’s not one bit funny to the addicts or their families. Weiner’s is not the dark, sardonic humor of NURSE JACKIE, which I love, but an annoying, inappropriate, and over-the-top cutesiness. To appropriate for material something so painful, so tragic as addiction, and then ask me as a reader to enjoy along with her the fun she had making up these clever songs was simply more than I could bear.

While she did plenty of homework on the slang used by addicts in rehab, Weiner has nothing to reveal about the brain damage that occurs in people on long term opioid use. Unless you understand Post Acute Withdrawal Syndrome, it WILL just seem like these people, these addicts, these junkies, are simply making bad decisions as they try to recover and end up relapsing. To an outsider it seems so simple—what do you want, your life or another high? Why can’t people exercise their free will to make the right choices?

Because their brains are damaged, that’s why! Without their natural dopamine, they (okay, WE) suffer from Anhedonia (inability to experience pleasure) Hyperalgesia (anything that’s going to hurt hurts way worse) a lack of energy, depression and anxiety. Personally I have never relapsed, but every time my assignment for the day is to live through yet another wave of PAWS, I’m struck anew by my understanding of why other people do. In fact, it’s so hard, it seems a wonder to me that anyone DOES make it through this. Recovering addicts are sick people. They need help and compassion, not punishment, not guilt trips.

Weiner limits the physical aspects of Allison’s withdrawal from her horrendous doses of opioids to a couple of movie worthy scenes of dramatic illness, and then we never hear about it again. The use of a rollercoaster track on the cover seemed an allusion to the up and down, roller coaster nature of recovery, but this is never mentioned. In outpatient recovery, Allison laments not being able to use pills to help her cope with the nasty things in life like her husband’s annoying noises when he eats cereal or the spit blobs on the sidewalk. Without describing, detailing or understanding the chemical brain changes in withdrawal that heighten anxiety and irritability and make people feel absolutely suicidal, a reader can only feel that Allison is weak and shallow for needing a pill to face such petty issues. This contributes nothing to the understanding of addiction.

The final straw for me was when Allison’s outpatient counselor hands her a phone and instructs her to call each of the doctors she’s scammed and tell her story. And they answer! She simply phones each doctor and in turn they pick up their phones and talk to her! Not only that, but one of them actually says, “Oh, my God, Allison, was this my fault? Should I have seen this coming?”

Weiner is famous for her resentment of the label “chick lit,” but this is the kind of thing that puts her book way outside of anything reflecting real life. Perhaps doctors DO immediately take calls from Jennifer Weiner, but she should know that this is not the case for most of us out here. Seriously, how many of you can just pick up the phone and immediately speak to your doctor? Weiner will no doubt argue she constructed this scene purely for dramatic effect, the way a movie scene is set up, but when the inability to actually GET HELP and make those connections with medical professionals is such a huge part of an addicted person’s story, this seems patently unfair. Particularly if Weiner wants to accept kudos for tackling this serious subject. The painful and important truth is that the last thing doctors will admit to is any concern they might somehow be responsible for the horrible outcomes of patients to whom they’ve so casually prescribed these damaging drugs. To me, this is the bottom line of the opioid epidemic story, the clueless doctors who send patients off on this journey that so often proves to be one of No Return. A group called Physicians for Responsible Opioid Prescribing will back me up on this. Google their site for more.

Maybe the best we can hope for from ALL FALL DOWN is that it starts a few conversations. Please check my APPEARANCES page for more on why this is such a hot button issue for me.  Read More 
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