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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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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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ACCIDENTAL ADDICT: a True Story of Pain and Healing....also Marriage, Real Estate, and Cowboy Dancing

I’m excited. I love crossing things off a To-Do list, and for almost four years now the only thing on it has been GET WELL. Now I’m crossing that off . FINALLY. I am so glad to be looking forward to a life that’s about more than struggling to recover from the nasty job opioid painkillers and the benzodiazepine Xanax did to my brain in conjunction with my total knee replacement surgery.

Maybe only someone who’s been through withdrawal from prescription drugs can fully understand what I mean by this, but that’s okay. I’m hoping my new book, ACCIDENTAL ADDICT, will help people understand what this long drawn out healing process entails. It's surely baffling to the loved ones of those in our situation.

More importantly, I hope people will read about my pharmaceutically-induced trainwreck and get the warning I never had. I like to picture somebody sitting in their doctor’s office being offered Xanax and going, “Are you kidding? You think I want to wind up like that woman in ACCIDENTAL ADDICT?”

ACCIDENTAL ADDICT: a True Story of Pain and Healing….also Marriage, Real Estate, and Cowboy Dancing. It’s gone to press—or however that should be put in the digital age—which is another huge item off my To-Do list!
To view a two-and-a-half minute YouTube book trailer,click here.

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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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