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LETTERS FROM WAKE ROBIN FARM

Benzobuddies and the Politics of Healing and Helping

At the time I finished up Accidental Addict, I had only the kindest things to say in it about Benzobuddies.org, a message board for people trying to get off of benzodiazepines. Now I have a few afterthoughts and, as Rachel Platten puts it in my favorite line of “Fight Song:” All those things I never said, were wrecking balls inside my head.

It’s time to say them!

For me, it was a relief to sign onto the Benzobuddies board, to find that others were suffering from this mysterious discontinuation syndrome that most people could not get their doctors to even recognize. I was not alone! It didn’t take long, though, to clue into the playground nature of much of the discourse, and note how anger at doctors and a person’s situation could quickly translate to anger for others on the board.

Along with the sharing of comforting commiseration, a continual frustration against the medical community is voiced, and everyone laments our seeming inability to get the word out about the dangers of these drugs. Here’s where I thought I had a contribution to make. It seemed clear to me that people still in the throes of withdrawal and recovery from the brain damage done by benzos cannot be taken seriously by their doctors. It’s too easy for them to write everyone off as simply nutcases. My plan was to heal and then tell my story. Since I was already a writer, this assignment seemed like a no brainer. I innocently thought the fact that I had such a squeaky clean record for prior substance abuse made me an excellent poster girl for this issue. How could the plot be anymore straight forward? I was a solid person. Xanax and Oxycodone damaged my brain. I struggled to heal and finally did so, and without the help of any medical professionals. So, beware, it can happen to anyone.

It’s not like I was the only one to consider writing a book about this, though. In fact, it’s a popular topic, the books people on the board will write sometime in the future when they’re finally up to it. People float their ideas and collect endless encouragement. People compliment each other on their writing and say how wonderful these unwritten books are sure to be.

When I posted on the board that I was already writing a book, however, the moderators jumped all over me. I guess it was threatening, somebody going ahead and actually DOING it. I was told, for the first but not the last time, how seriously they take their rules. Got it. But I knew I didn’t need anybody’s approval or encouragement to tell and publish my own story, and that seemed to disturb them.

When I posted that I had indeed published Accidental Addict, the moderators removed my post, citing rules against linking to any commercial sites. Same thing if I ever said I’d done a blog post people might want to check out. Nevermind that there were no links. Never mind that the picky rules they would laborious write out were enforced only selectively, and others were allowed to post links to blog posts, books of interests, YouTube videos etc. When I would speak up about my book, the moderators—one in particular—would swoop in like a pack of the witch’s flying monkeys and disappear my posts, issue stern warnings against me.

I came to feel that the Benzobuddies board has rules, but the moderators have no wisdom in their “rulings.” And it’s not about these stated rules anyway. It’s about breaking the larger, unspoken rules. The consensus on the BB board is that we have nothing to be ashamed about and our story should be told, but people who actually dare to speak up, go out there and take this story public are penalized. I watched in dismay as a fellow BB friend interested in setting up a boots-on-the-ground group to help local suffers was reprimanded. What? She should have been encouraged. Privacy rules were cited, but what if people aren’t worried about privacy? What if some of us truly DON’T feel ashamed of the position we’ve been put in and actually mean it when we say we want to help educate people about the dangers of benzos?

The Powers at the BB board look askance at anybody who actually wants to try to help out in the wider world. This was most evident in their booting off of Monica Cassani, a San Francisoco woman who worked tirelessly for years to offer a website—Beyond Meds—which contained resources for people trying to get off of psych meds. The technical rule she broke, according to BB, was posting a link to her site. It was commercial, they ruled, because she had a button for contributions. Ha! As she put it, she didn’t collect enough for a weekly latte! Never mind. The real rule she broke was that, like me, she refused to kneel before the moderators. As one of the mods put it, “she was such a difficult woman.” Right. Difficult because she never signed onto the idea that the mods were all powerful and all-knowing.

In the end I was thoroughly excoriated for unabashedly using the term “addict” in my title. Reams (if that’s a word that can be applied to on-line posts) are written on the BB board lamenting the misunderstanding in the wider world between the terms addiction and dependence, as if avoiding the label of “addict” will help the slightest in speeding healing. People, I’m here to say that your brain doesn’t care what you call it, the physical effects are the same. I had doctors who treated me like an addict and doctors who insisted I wasn’t one. None were any help at all, so what difference does it make?

Yes, we desperately need the doctors to understand what’s going on here in both the benzo epidemic and the opioid epidemic, but in the meantime, shouldn’t everybody be encouraged to get their stories of iatrogenic addiction out there? My idea, in sharing my story, was to give people a heads up and let them know they better have their own backs in accepting prescriptions of any of this stuff. It’ll be great, someday, when and if doctors understand all this better, but in the meantime, save yourself.

Read all the cautionary stories you can find. The question is not whether you are officially to be labeled an addict; the question is whether the drugs you’re taking might be hurting you without your even realizing it.

Many people find help on the Benzobuddies board, and you may too. But please don't take what you read there as the last word on anything.  Read More 
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OMG, AstraZeneca's at it Again and Frank's Back!

Apparently handsome actor Mike McGowan did a good job for Astro Zeneca in convincing people to plead with their doctors for Movantik, because they’ve come out with a new commercial featuring him once again as Frank, the construction foreman with opioid-induced constipation.

Absolutely shameless! Commercials like this ought to be illegal! Watch as Astra Zeneca cynically attempts to normalize addiction to opioid painkillers. The theme tag on this one is especially appalling, something about “Standing up to your opioid-induced constipation.” In other words, Don’t back down! Don’t be a wimp! Stand up for yourself! Be a man and bravely march in to your doctor’s office and demand another drug! The drug you deserve and are entitled to!

Please note here: sympathy for your constipation. It's really a bummer! And sympathy for your back pain too. Of course you need to be on opioids. That goes without saying, buddy.

But guess what? Don't be looking for any sympathy from the medical community for the effects of trying to get OFF of these drugs. By then you're an addict, and probably deserve it, right? Your doctor won't be able to wash his hands of you quickly enough.

The whole concept of Movantik is ridiculous in the first place. As an opioid agonist , it actually counters the effects of the opioids people are already taking. This means that one of the side effects is feeling like you’re in opioid withdrawal. Duh! If you’re going to go through all that, might as well bite the bullet, get off the opioids, and win the prize of being clean.

But no, the pharmaceutical companies would rather have you paying to take two different drugs which will fight it out in your brain and your body. This is not going to feel good. So why not be brave in a way that will not involve filling the coffers of Astro Zeneca and whichever pharmaceutical is selling you your narcotic of choice?

Taper off of your opioids. It may take awhile, and it’s not going to feel good, but opioids can actually make your pain worse in the long run, so if you kick them, you’ll eventually have less pain and be healthier.

And you’ll have better things to think about than worrying whether you can go to the bathroom!

I wish you good luck in finding one of the rare doctors who has the slightest clue what patients are being put through in first being prescribed these drugs and then being told to get off.  Read More 
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The List Gets Longer

I guess I was born too soon to be a Chris Cornell fan, but this morning when my 37-year-old son delivered his baby for a morning of grandparental adoration, he confessed that his one teenage transgression had been sneaking out of the house and walking the two miles to town one night for the midnight release of Cornell’s band Soundgarden’s 1994 album “Superunknown.” Who knew? Not me.

And now Cornell is dead. It just keeps happening, doesn’t it? Every time I read an obituary without a cause of death or see the latest headline about a famous person who was “found dead,” the first question that pops into my mind is What drugs were their doctors’ prescribing them? What opioids or benzodiazepines were they struggling to get off of?

In no time at all Cornell’s unimagineably distressed wife was insisting she can’t believe her beloved husband, a guy who flew home for Mother’s Day, would have deliberately killed himself. She points out that he was on Ativan and mumbled on the phone he may have taken too many. I believe what she says about this man she knew better than anyone else, and I would bet this benzodiazepine in some way contributed to his death.

Remember when rock stars like Janis Joplin and Jimi Hendrix shot up heroin, overdosed, and died? Now it’s all about prescription drugs, the stuff the doctors give folks supposedly to HELP them.

Queen of Rock ‘n’ Roll Stevie Nicks has been outspoken about the way the gates of pharmaceutical hell opened for her. After kicking cocaine in rehab, a psychiatrist put her on Klonopin, saying it would help prevent a relapse. Ha! Instead she lost the better part of a decade, poignantly, as she puts it, the time when she might have even had a baby. She eventually recovered, but not before suffering far more damage from prescribed Klonopin than she ever did from cocaine.

It doesn’t require a history of street drug abuse to get in trouble with opioids and benzodiazepines such as Ativan, Klonopin and Xanax. I had an almost stupidly squeaky clean record on drugs, and yet, coming off of my very small, occasional dose of Xanax made even me suicidal. If it could happen to me, it could happen to anyone, and this is what made me decide to tell my story in Accidental Addict. Everybody needs a heads up, not just rock stars with longstanding addiction issues.

I feel terrible for Chris Cornell’s wife. She not only has to suffer the tragic loss of her husband, she now has these people pouncing on the diagnosis of suicide, with all the judgment that goes along with it. He killed himself? Well, bad on him! How selfish! How weak!

The story—a true tragedy—is not that simple. The drugs doctors prescribe us can ruin our brains. Coming off them can turn a happy person suicidal. With no help from the medical community, I somehow managed to survive. Others don’t. Take care. Take care of the people you love. Don’t believe everything a doctor might say. They are not gods, and the drugs they are prescribing are killing people.  Read More 
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Another Drug-Pushing Pharmaceutical TV Commercial

I was completely disgusted when I saw my first TV ad for a new drug called Movantik a few months back. It featured a woman of my general demographic who admitted to struggling with constipation due to her doctor-prescribed opioids. Great! First the drug companies convince the doctors they needn’t worry about addiction in prescribing opioid painkillers to their patients, then, once the patients are hooked, they’re right there to sell them another drug to deal with the side effects. But see, she’s a nice lady. Clearly not an addict. Nice people can take opioid painkillers. You got that message, right?

AstraZeneca’s newest commercial is equally insidious. It’s entitled “Frank’s Moment,” meaning the moment this completely healthy-looking construction foreman—ACTOR PORTRAYAL flashes briefly on the screen—gets the enlightening news from his doctor that his problem with OIC—Opioid-Induced Constipation—can be fixed simply by popping another pill! Yay for modern medicine!

The cynicism of the drug companies and these ad copywriters is breathtaking. They know that a huge percentage of middle-aged men who wind up on opioid painkillers arrive in this predicament by way of lower back pain, something that’s extremely common, especially among construction workers prone to “throwing their backs out.” So Frank’s world, the exposed floors, two-by-fours and staircases of a substantial new house going up, is familiar to them.

Please note though, that Frank is the boss. He’s not carrying anything heavier than his laptop. He’s in a position of power. He points people here and there. But, hey, look what a stand-up guy he is, taking a coffee break with his underlings. Also—this is important—he’s ridiculously goodlooking and fit. Actor Mike McGowan, playing “Frank,” delivers his lines to perfection. Sure, these words flash briefly on the screen: OPIOIDS SHOULD BE USED RESPONSIBLY AND ONLY WHEN PRESCRIBED BY A DOCTOR. But anyone with half-a-brain can see that if a great guy like Frank has no problem taking narcotics on a daily basis, who are they to go beating up on themselves? Nobody’s calling our Frank an addict, right? Hard to picture him going home to a wife who nags him with her concern about his prescribed drugs.

Appealing, affable Frank displays winning comic timing, the way he winces in acknowledgment of the bad puns he has no choice but to deliver, inviting his TV-watching buddies to bond over the essentially embarrassing nature of constipation.

Stop! I can’t take it! Because, people, this is not about constipation. It’s about addiction, which is way more than embarrassing. It’s deadly. An ad like this is quite simply enabling; it tells the viewer that as long as their doctor is still writing their prescriptions, they’re safe.

But they’re not. Opioids are not a good solution for chronic pain, and Frank does not represent the reality of a guy taking opioids long-term. The real guys get fat. Or they waste away. What they don’t do is stay as fit and cheerful as Frank. They go on disability and withdraw from life. Through a phenomenon called Hyperalgesia (increased sensitivity to pain) opioids eventually make their pain worse until their sole daily goal is making sure they continue to get their drugs. These are the guys who eventually contribute to the statistical uptick in deaths among white, middle-aged men in America.

Finally, here’s the real capper about this new wonder drug. Guess what one of the listed side effects is? Symptoms of opioid withdrawal! Isn’t that rich? In an effort to go to the bathroom oftener, you may experience sweating, chills, anxiety, irritability, nausea and stomach pain. Hey, here’s an idea: Why not just bite the bullet, get yourself through the horrors of withdrawal to come out drug free rather than suffering with these symptoms as you continue to layer on even more prescriptions?

I could go on, but I wrote a whole book—Accidental Addict—to explain how I lived through this myself and why I have the feelings I do on the subject. I’m starting to hear from people who’ve read it and who see parts of their own stories or their loved ones’ in mine. Please check it out.

Save yourself. Save somebody you love.

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