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LETTERS FROM WAKE ROBIN FARM

Benzobuddies Revisited

This comment showed up on  a blog post I wrote a year ago, so I thought I'd move it to the top where people would have a better chance of finding it. Everything the commenter writes here rings true to me regarding the webside, Benzobuddies.org.

 

 

June 06, 2019 8:27 AM EDT

I experienced the same thing on BenzoBuddies. At first it was a great forum and others on that forum helped me through the toughest times of my withdrawal. After I healed, I thought I would pay it forward. I was doing a good job helping others and then decided to introduce outside sources of hope and encouragement. I was instantly reprimanded and when I complained, they pretty much locked down my account to where I couldn't post anything without moderator approval, nor could I Personal Message anyone. My account was for all intents and purposes...worthless and not usable. I told one moderator in particular that you need people on the site that healed to help and give hope to others. She dismissed it and said I thought I was "special" and "better than everyone else." Because I volunteered my time on the site? Needless to say I don't go on BBs any longer. Their draconian rules are only meant to stifle what they claim they are about, which is giving others hope. Too many rules, too many moderators on a power kick and too political...that's how I would sum up BenzoBuddies. Plus too many hard core people that claim they never heal when they don't tell "rest of the story." Almost all of those cases involve being poly drugged and having preexisting medical conditions prior to any type of anti-psychotic drug use.

- Igotmylifeback

 

 

Like this poster, while I was initially relieved to find the Benzobuddies site and learn that I was not along in the hell I was going through in withdrawal from Xanax, the place quickly became a negative in my life.  The nastiness shown to me by certain members and moderators was hardly conducive to healing when what is so sorely needed is kindness.

 

I right away broke the unspoken Benzobuddies rule that says it's okay to go on at length about the amazing book you're going to publish just as soon as you get well, but you mustn't actually DO it.  Apparently it's hard on the feelings of people who want to tell themselves they're going to write book.  They're enjoying collecting  posts of encouragement and admiration from others for the writing skills they're already displaying.  Actually writing a book makes them face the fact that they are NOT writing a book.

 

I had hoped the story of my eventual recovery would be helpful to others. It certainly wasn't helpful to me.  Okay, it's true, it WAS therapeutic to feel I would have my say and tell what it felt like to sit in each of these doctor's offices, but in writing out and going over and over in editing the most painful scenes of my ordeal, I really set myself up for PTSD. People who just forget may do better. But, I'm a writer; that's what I do.

 

Once my book was published, BB moderators scolded me if I mentioned it on the site.  Occasionally the moderator, Colin Moran, would talk about setting up a thread where books by members or former members could be listed.  Funny thing, that list finally went operative about two days after closed my account. I am not exaggerating.  I assumed my book would be on that list, but a fellow BB whom I'd befriended off the board told me no, it wasn't there.  When she suggested Accidental Addict be listed she was told they couldn't because I hadn't personally requested it.  Ha! How's that for a Catch-22? Because now that I was off the board, I had no way of contacting them anyway.

 

Well, nuts to them. In the end, I doubt people on the BB board are the absolute best audience for my book anyway.  So far, it's probably had more impact on people who start reading it just to check out a trainwreck story of somebody else's problems, only to find that drugs that gave me grief (Oxycodone and Xanax) are the very ones they themselves are currently taking.   

 

So, heads up! If you're taking Xanax occasionally to sleep, you may be compromising your brain.  You won't know how much until you try to go off.  Please, educate and save yourselves.

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Bitter Pill Indeed

Maybe the word is finally getting out. It's about time.  The New Yorker's April 8th edition features an article called Bitter Pill: Why do we know so little about how to stop taking psychiatric drugs?  It follows the story of a young woman named Laura Delano, who began taking prescribed psychiatric drugs in her teens and suffered her doctors' layering on of more and different drugs (19 medications in 14 years) before she finally figured out for herself what her doctors weren't telling her, that to get well, she needed to go off  the drugs, not take more.

 

I'd heard of Laura because she would be mentioned on Benzobuddies.org, a site I used to visit, where people tried to help each other wean off of the class of psych drugs known as benzodiazepines—Xanax, Klonopin, Ativan and others. She had gone public with her story on another site, Robert Whitaker's Mad in America. A Canadian benzo buddy of mine had met up with her for coffee, so,when I saw this in The New Yorker, I already knew her as a real person and I was just glad somebody was paying attention.

 

I have written before about Robert Whitaker's eye-opening book, Anatomy of an Epidemic, but it bears repeating. I bought copies for each of my kids with instructions to read cover to cover if they ever hit a point where a doctor suggested they or their family members be prescribed one of these drugs. 

 

Laura Delano says it was reading Anatomy of an Epidemic that changed her life, gave her the idea that just maybe, instead of taking more pills, she ought to be taking fewer.  It takes a long time to undo the damage these drugs can do to a person's brain, but healing is possible and she's recovering.

 

Sadly, there are many people like Laura, who have endured years of being polydrugged, and find little help or support from doctors when they try to get off.  I think my own story, detailed in Accidental Addict, and endorsed by Robert Whitaker, is probably even more common—middle-aged women who are unsuspectingly damaging their brains with doses of Xanax so small they think surely it couldn't be a problem.

 

Here's the bottom line as I see it: if you are taking prescribed antidepressants or benzos but are just  coping, not really doing well, maybe even coming up with weird new symptoms, please consider that your drug regimen might actually be your biggest problem. Please don't waste energy worrying if you must take on the label of "addict." The only question is, are you better off on these drugs or off of them? And don't rely on your doctor to have your back. His signature on the prescription pad will not save your brain.

 

Read Anatomy of an Epidemic. Check out the stories on Mad in America. Read my book.  See if any of this sounds like what you're going through and then, please, get busy saving yourself.  

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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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Loving My Life Again

My friend Marsha Ham and I go way back. We met around the time our first babies were born, so that means we’re talking 35 years at this point! We always take each other out on our birthdays and share the latest stories of marriage, motherhood and now, grandmotherhood.

In the summer of 2013, I asked if we could postpone her August birthday lunch for a month. I was in over my head with trying to ready a little bungalow to put on the market, and looked forward to the massive relief I expected when the stress of this was behind me. I thought we could drive the hour up to take a look at the farm property her daughter had just bought and then have lunch in Silverton.

I’m glad I didn’t know at the time it was going to take me three-and-a-half years to make good on this suggestion! That summer, I had no idea how sick I really was or how long it would take before I fully recovered from the effects of prescribed Oxycodone and Xanax.

Now that I'm well and busy reclaiming my life, I don’t often visit my old message board for people trying to get off of benzodiazepines, but the other day somebody wrote asking about anhedonia and wanting stories of people who’d recovered from this. While I never felt inclined to write blog posts about being sick, I now find I do want to write about the joys of being well. I want to help spread the message to anyone on this same path that yes, recovery is possible.

Anhedonia, for those unfamiliar with the term, is defined as a condition characterized by an inability to experience pleasure in acts which normally produce it. And we’re not just talking about sex or other peak experiences here! It’s everything. Most of us don’t even realize the simple, moment to moment pleasures involved in daily life—the first cup of coffee in the morning, for example—until they're completely stripped away.

I didn’t realized how thoroughly compromised my brain was that summer. I thought I was just over-worked, sick of life, and mad at everybody. Ditching my entire family and running away sounded like an excellent idea. In my darkest hours of bleak despair, I was, frankly, suicidal.

Nothing to do but hang on and live through it, which is the story I describe in Accidental Addict. Eventually I started having what people call “windows,” where I’d notice myself having positive thoughts again, and now, finally, I’m back to my old self. But it took a ridiculously long time.

That’s why my outing to Silverton with my friend yesterday seemed so momentous. I savored my awareness that my thoroughly healed brain was capable of delighting in every little thing: the blessed sunshine after this long rainy Northwest winter, the pleasure of reconnecting, of being out in the world again. I loved seeing Marsha’s pistol of a daughter in her element, and we both marveled at her energy, remembering our days as young back-to-the-land moms when we were ourselves trying to rehab ramshackle houses and grow gardens, all with kids underfoot.

So yes, it’s possible to heal from this horrific symptom, and for people who come out of anhedonia, it’s almost like a religious experience. We have a renewed appreciation for the essential sweetness of life itself.

Anhedonia is a concept I feel is missing from so many discussions of recovery from drug addiction. Nobody talks about just how long it takes for a brain to recover. Addicts manage to ditch their street drugs and go through withdrawal, only to find themselves thinking that life “clean” isn’t what it’s cracked up to be. But that’s because they’re not really well. It’s too soon to judge. It might take a couple of years after being technically “clean” before a person begins to experience the everyday joys of life again. I used to be as judgmental as the next person, feeling all these reported relapses were just instances of bad decision-making. Now I understand the despair, and I wish addicts could get less judgment and more emotional support in trying to stay clean long enough to let time do its healing.

If this is you, if you’re suffering from anhedonia after withdrawing from drugs—street or prescription, it makes no difference to your brain—hang in there. It often takes longer than people expect, but you will heal in the end. My Rx is simple—no going back on your drugs, no layering on of new drugs to “help.” Just give it time. Eat right, rest, exercise, try not to tear it with the people who care about you, and keep hanging on to the belief that if you stick to this path, one day for sure you’ll again be walking back out into the light.  Read More 
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Up From Anxiety?

This past weekend’s issue of The Wall Street Journal featured a front page article by one of its own reporters, Andrea Petersen. I began reading with great interest since it was entitled “Up From Anxiety,” and I’m always interested in hearing how people recover from such a diagnosis. Ms. Petersen chronicles her early start with panic attacks and all the different therapies and medications she’s tried over the years.

While she attempts to be upbeat about her current situation, the conclusion of her story, the “up” part, broke my heart: she’s on Klonopin. “Klonopin can melt my anxiety and many of its annoying accouterments—racing heart, shallow breathing, twisted thoughts—in about thirty minutes. It can even derail a full-blown panic attack if I take enough. I don’t take it often, my life ‘before K’ and ‘after K’ is starkly delineated.”

Having just spent several years regaining the health of my brain after taking a very small dose of another benzodiazepine, Xanax, over the course of five years, I found her implication that Klonopin was the ultimate solution horrifying. During recovery I read hundreds of stories of people on a benzo recovery board, everybody suffering the tortures of the damned trying to get off of these drugs, most people feeling they’d give anything to go back and try to deal with their anxiety issues without drugs. The anxiety attacks for which they were originally prescribed the benzo are nothing compared to what they’re trying to survive now.

I’m finally well and I can look back and see how this worked on me. Yes, like Ms. Petersen, I found Xanax to be amazingly efficient. She’s not lying—these things DO calm anxiety. At least initially. But people build up a tolerance. They start having symptoms that are actually interdose withdrawal—the drug saying Hey, time to take more! Doctors who have originally prescribed the drug are loath to ascribe side effects to the very drug they’ve prescribed. Instead they’ll tell the patient that their original anxiety is just coming back. They will up the dose or layer on some different pharmaceutical until the person is what is referred to as “poly-drugged.”

I didn’t see the harm in Xanax either. I thought of it as a little something in my toolkit for dealing with life. A stressful situation? Yes, why not make it a bit easier? And a half a tab at three am reliably put me back to sleep. I never felt bad in the morning and God knows I was no drug addict type. Where was the harm? Like Ms. Petersen, I was saying, “I don’t take it often.”

Now, having suffered through withdrawal, I’m a person who conks out when my head hits the pillow and sleeps straight through the night. Who knew I was actually teaching my brain to NEED the drug to go to sleep? I’m now calmer than I’ve ever been in my life, free of drugs.

I feel terrible for Andrea Petersen and her family and I wish her the best. I don’t mean to be judgmental in any way of the fact that she’s taking Klonopin. I just don’t think it’s going to be good for her in the end, and I would hate to see anybody read her story and feel validated in giving this poison a shot.

I would like to give people the heads up I never got! Read More 
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ACCIDENTAL ADDICT is available on Amazon

Please click here to view a two-and-a-half minute YouTube trailer for ACCIDENTAL ADDICT.
ADVANCED PRAISE FOR ACCIDENTAL ADDICT:

After telling in lucid prose how she become an Accidental Addict, Linda Crew provides a prescription that all of medicine should heed: “A doctor should never prescribe a drug without an understanding of what it takes to get off of that drug, and a willingness to help his patient accomplish this.” One hopes that everyone who prescribes benzodiazepines and opioid painkillers will read this compelling memoir.
Robert Whitaker, Anatomy of an Epidemic

Crew’s inspiring triumph over addiction and withdrawal is a lifeline for anyone struggling to recover from prescription painkillers or anti-anxiety medications…. a brutal eye-opener for bystander friends, family, and doctors at a loss for clarity and compassion who, inadvertently, reopen the dark, black hole of desperation. This bold memoir is a riveting roller coaster of devastating defeat, tenacious courage, and exhilarating joy, gratitude, and hope.
Gretchen Olson, Call Me Hope

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.
Andrew Kolodny, MD—Executive Director, Physicians for Responsible Opioid Prescribing

Accidental Addict is an excruciatingly tender, necessary work, wonderfully written, so compelling, so honest. Incredibly personal and filled with love. The many, many people who don't even know this is happening to them will thank Linda Crew over and over.
Jane Kirkpatrick, Homestead

I found myself instantly drawn into her story, and her witty delivery kept me engaged. Definitely a wake-up call for all of us about the perils of painkiller and anti-anxiety medication use, and the way doctors have carelessly over-prescribed these drugs in the last few decades. A fascinating (and scary) read that won’t be easy to forget.
Margot Vance-Borland, LPC

Linda Crew clearly has a gift. Her memoir about the unrecognized epidemic of protracted withdrawal illnesses caused by benzodiazepines and other psychiatric drugs is written like a novel and, like a brilliant piece of fiction, gets under your skin…an important piece of literature that may help educate many.
Monica Cassani, author and editor of Beyond Meds, prize-winning web magazine

Linda Crew's Accidental Addict is a must read for all medical students across America, and physicians who treat pain will find this book very useful as they rethink the way they are prescribing narcotics....a superb book on an enormous medical issue of our time.
Mark Rampton, M.D., Family Physician at Corvallis Family Medicine

Addiction to prescribed medications, due to the actions of well-meaning medical professionals, has become alarmingly common across the country today. Linda Crew has written a compelling and bravely honest memoir of her struggle and recovery from the aftereffects of legally prescribed narcotic painkillers and benzodiazepines. Her voice is clear on their devastating impact, and her story is one that needs to be widely read and shared by both patients and providers.
Catherine Saeger, LICSW

If you believe that smart, strong, successful people who faithfully follow the rules, listen to their doctors, and have a solid and impressive support system of family and friends are not the “sorts of folks” who become addicted to prescription narcotics for post-surgical pain, then you’d best read Linda Crew’s Accidental Addict, a memoir that’s as harrowing, honest, and raw as it is timely. Crew writes with a ferocious energy, as though she’s determined to finish the book even as the walls of her own home are crashing down around her.
Rick Borsten, The Great Equalizer

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