Breaking free of 12-Step Dogma re Opiates and other Addictions

 

Was a professional beach volleyball player, very very active exercise bulimic, exercise addiction have had 4 foot surgeries, and big ones, 2 knee surgeries, and am now 56, 2 days away from 57. On and off opiates for 25 years, post operatively and when surgeries went south due to doctor malpractice.

Been thinking about opiate epidemic alot and the thread that runs through depression, despair and addiction, because I fell in that trap. I ended up taking an unusual way out, not the traditional dogma and so forth. I’ve been to so many different programs OA, AA, group therapy and hospitalization for same, surgeries from overexercise, and being that as an actor, thin was in..1970’s, Post Twiggy Lauren Hutton Culture, the opiates…well they snuck through the side door when cocaine was the main attraction. It follows, in this case, I needed an alternate egress of escape.

Same with my Tardive Dyskinesia (TD) I got from my atypical antipsychotic, one that they don’t prescribe much anymore it’s so neurologically aggravating, according to comparative studies of these products. I have these uncontrollable movements, also bad for pain, especially if you have it.

This conditions are one big knot of iatrogenic (Caused by drugs, medical treatment or medicine itself) disorders, particularly psych drugs. The fallout of all of it, especially the side effects of widely popular, highly profitable medication is the big elephant in the room. I hate to use this overused catchphrase, but it’s stigma. Even though the drugs caused these problems, I always felt I was the disease.

Just like with the opiate epidemic. Who wants to stand up and say that they never want to get high again but at the same time can’t imagine a life without  Even thinking about it is abysmal. Who wants to commit to quitting, something they can’t commit to? Plus, people are in legitimate pain, at least, I was.

There’s a whole new way of looking at Addiction and some of the limitations of the traditional, one size fits all, punitive ‘the program.’ Don’t get me wrong. If it weren’t for AA I might not be alive, but there are some things about it I’m glad I left behind.

Black and white thinking, for one. Paternalism, for two. Little digs at the soul such as “Once an Addict Always an Addict” not helpful to me.

On the other hand, the big book of AA is one of the most inspired texts on the planet. I believe it was a divine act, or Bill and Bob were savants of one sort or another. As Bobby Womack sort of sang in “Across 110th Street”  ( Tarantino’s “Jackie Brown,”) You never know what you’ll do until your back is…I’m going to go look that lyric up right about now. Music is Medicine to me.

Allison Strong

About being a ‘Professional Patient’

 

Re: Finding work as a Patient Advocate, or Ambassador, or “Patient Influencer” paid or unpaid.

Last time I posted it was about drumming up some extra dollars by promoting what’s called ‘disease awareness’ or speaking on behalf a drug that’s benefiting you personally. I  promised you a series on this subject. I’m delivering, starting now.

As you probably know, Doctors often work for drug companies or manufacturers of patented medical devices, as recently reported by the New York Times and other major media outlets regarding Memorial Sloane-Kettering’s chief medical officer (CMO), Oncologist Dr. Jose Baselga, who failed to thoroughly and completely disclose his financial ties to industry, particularly in the arena of research. The public outcry regarding the financial pressures brought to bear on the Medical field, something called ‘Institutional Corruption,’ is well-documented in Robert Whitaker and Lisa Cosgrove’s book, “Psychiatry Under the Influence.” (Whitaker wrote “Anatomy of An Epidemic” and “Mad In America,” and crusades for social justice in the treatment of mental illness. His blog, Mad In America, or MIA, is easily findable online. Also, if you’re curious about a medical professional, everything you need to know down to the catered lunches is ‘supposed’ to be on Pro Publica’s “Dollars for Docs.” Dr. Baselga forgot to mention a few arrangements he had, more than a few times, it’s said.

My point? Doctors aren’t perceived as trustworthy as they were in the fifties and sixties, when they did commercials telling people of studies proving cigarettes weren’t harmful. Back then, a white lab coat could sell anything.

For a while Drug companies used celebrity spokespeople to push their products, like Sally Field, Blythe Danner (Gwyneth Paltrow’s Mom), Professional Golfer Phil Mickelson, (Enbrel for his Psoriatic Arthritis), but research shows an inverse relationship between fame and relatability. Just because someone is well-known doesn’t mean you’ll go out on a limb and ‘Ask Your Doctor if Drug X is Right for You.’ What they’re looking for these days is the real patient, the everyday person, doing every day things, and the depth of their story.

 

Patients with otherwise unremarkable lives, like me, or you, are the last bastion of credibility.

The Drug Companies, Ad Agencies, PR Firms, Patient Advocacy Groups, they all want to hear our stories, whether they are stories of success or stories about our struggle. My next post will tell you where to find a few people who are constantly looking for us.

Patient Influencers, Patient Advocates, Mental Illness Awareness Week

Yesterday in the New York Times there’s a great article, “When Actors Can’t Sell It, Pharmaceuticals are Turning to Actual Patients.” It’s true. This article breaks down and names the different types of businesses who are always hunting for people to be in commericals, do paid public speaking, appear in print advertising, that kind of thing. Ad Agencies like Young and Rubicon in NYC actually have departments specifically for prescription drugs. Talent Agencies who specialize in it. Casting Directors. Producers, PR firms like Spectrum Science PR, Coyne PR, The Lockwood Group specialize in special events at conventions like the American Medical Association’s annual event, the APA, Psych Congress.

Caveat: You must be a real patient, truly benefiting from whatever drug you’re being paid to promote. Drug companies make industrial videos, too, for internal use, to show their sales team, to inspire those who have to get out there every day and convince distracted, hurried and harried Doctors to try these products with their patients.

 

This is difficult to do, because most doctors and many patients are reluctant to try brand new drugs, because we know the least about them. Prozac, for example, was approved on the basis of 5 6-8 week studies that showed the drug to be somewhat more effective than placebo. (Individual Experiences may Vary, I took off like a rocket and burned brightly for 8 straight years and then crashed)

However, if you think it’s worth it, and you want to make a difference and make money at the same time to be able to afford your medical expenses, you might A: Check it out, or B: Remember the next time you see ‘Actual Patient’ written in black or reverse white below someone on television, that they are a professional patient.

If you are interested, next week, I’ll have more details, including how I did it. My story begins way before there was a drug, I was in a side affected jackpot and looking for clues on how I could reclaim my life….another thing to consider.

About being a ‘Professional Patient’

 

Re: Finding work as a Patient Advocate, or Ambassador, or “Patient Influencer” paid or unpaid.

Last time I posted it was about drumming up some extra dollars by promoting what’s called ‘disease awareness’ or speaking on behalf a drug that’s benefiting you personally. I  promised you a series on this subject. I’m delivering, starting now.

As you probably know, Doctors often work for drug companies or manufacturers of patented medical devices, as recently reported by the New York Times and other major media outlets regarding Memorial Sloane-Kettering’s chief medical officer (CMO), Oncologist Dr. Jose Baselga, who failed to thoroughly and completely disclose his financial ties to industry, particularly in the arena of research. The public outcry regarding the financial pressures brought to bear on the Medical field, something called ‘Institutional Corruption,’ is well-documented in Robert Whitaker and Lisa Cosgrove’s book, “Psychiatry Under the Influence.” (Whitaker wrote “Anatomy of An Epidemic” and “Mad In America,” and crusades for social justice in the treatment of mental illness. His blog, Mad In America, or MIA, is easily findable online. Also, if you’re curious about a medical professional, everything you need to know down to the catered lunches is ‘supposed’ to be on Pro Publica’s “Dollars for Docs.” Dr. Baselga forgot to mention a few arrangements he had, more than a few times, it’s said.

My point? Doctors aren’t perceived as trustworthy as they were in the fifties and sixties, when they did commercials telling people of studies proving cigarettes weren’t harmful. Back then, a white lab coat could sell anything.

For a while Drug companies used celebrity spokespeople to push their products, like Sally Field, Blythe Danner (Gwyneth Paltrow’s Mom), Professional Golfer Phil Mickelson, (Enbrel for his Psoriatic Arthritis), but research shows an inverse relationship between fame and relatability. Just because someone is well-known doesn’t mean you’ll go out on a limb and ‘Ask Your Doctor if Drug X is Right for You.’ What they’re looking for these days is the real patient, the everyday person, doing every day things, and the depth of their story.

 

Patients with otherwise unremarkable lives, like me, or you, are the last bastion of credibility.

The Drug Companies, Ad Agencies, PR Firms, Patient Advocacy Groups, they all want to hear our stories, whether they are stories of success or stories about our struggle. My next post will tell you where to find a few people who are constantly looking for us.

Finding work as Patient Advocate first in a series

 

A pleasant side effect one major side effect I have has been traveling and doing paid public speaking about overcoming these iatrogenic (Caused by medical treatment or medicine itself) complications of psych meds.

Because these are iatrogenic (treatment or medication ‘complications) they’re touchy subjects, the big elephants in the room. There is stigma to overcome, on the part of doctors and patients. Because of this hesitancy on the part of psychiatrists, primary care people and neurologists, it took me 3 years and 10 appts with top neurologists to get a simple diagnosis and relief from my involuntary movements. My point in this case with TD?

If the doctors would get over their uncomfortability and be willing to ‘break the news’ and get their patients to the appropriate specialists, sometimes this side effect can be prevented w/o patients having to give up meds they really need. No one will talk about it. I am willing to.

…..so how does one find work like this? Well, I’m finding out! The money isn’t stratospheric, but it’s helpful, I can pay a private literary coach to help me edit my book, get my hair done, the little things I can’t afford because of my high medical expenses. It’s nice to be a ‘part of’ something bigger than myself and do some good in this world.

I can’t ever discuss specifics, because marketing and many other matters are proprietary and confidential. But the basics of finding rewarding work in this elusive field? I’m happy to share. Let me know and also feel free to email me at bipolarbrainiacSFL@hotmail.com

Allison Strong

I work for you and you won’t give me a job recommendation? Seriously??? Seriously?

I’m nurturing a fantasy of returning to the work force in my early sixties, and come off of disability insurance for bipolar disorder. I recently took a look at my book of letters of recommendation, because an alternative radio station down here, “The Shark” is interested in me for part -time work as a disc jockey. Today this is called voice tracking. You can do it from your frickin’ car if you have the right technology. So I’ve asked some people for letters of recommendation. There are two other parties who asked me for letters of recommendation. So yeah, I’ve been asking the people I do little speeches for or write for. My work as a ‘professional patient.’

Apparently, certain sorts of work in the drug world, the pharma world, they won’t give you a letter of recommendation, for reasons I can only begin to imagine. This bothers me at a gut level, because I’ve been gamely serving up my soul for the past year. This ‘work’ is well-paid, it’s called Patient Ambassador work. Did it happily, but when I was told I can’t get a simple ‘vouch’ or letter of recommendation for similar, part-time work, I freaked. I wonder, when physicians consult or do research for drug companies, becoming “Key Opinion Leaders,” if they, too, are told “I’m sorry, we can’t recommend you or vouch for your character.” What is wrong with this picture?

Would you feel the same way I do?

It just goes to show, I need to work for myself. I’m the best judge of my own character and work ethic, and if you hire me, I’ll do a bang-up job for you.

Who benefits more from ‘Right To Try’, Patients or Drug Companies?

Last week there was another article on patients getting early access to drugs not yet approved by the FDA. Who would this benefit more? Patients or Drug Companies? I think it’s a way better deal for patients. It leaves pharma totally exposed to the chance that a few individuals, if they had adverse events, could rock the boat and jeopardize the medicines chance of FDA approval. That being said, if I was dying or terribly depressed again, and there was a new drug or new class of drug that had positive metrics, I’d sure want access.

There has been so much medical innovation lately..it’s hard to fathom.

Nightmare turned into Daytime Depression is it real?

Me and my beloved ‘Mummykat,’ who we lost over Christmas this year. She was fifteen and her system just gave out on her. She went first. Then we lost ‘babykitty,’ who just gave up, even though we adopted a new kat.

80 percent of people who get Tardive Dyskinesia have uncontrollable movements, large or small, of their jaw, mouth, tongue and teeth. Over time, I’ve lost over ten teeth, which doesn’t seem fair.

Anyway, I had this terrible dream about losing the rest of my teeth a few days ago, and I’ve been depressed ever since. Did my antidepressant stop working (this has happened countless times…so we change up) or is this deal with the teeth a real downwards drag on me? I’m not sure. But if this keeps up, there’s going to be some antidepressant changes, that’s for sure. Going to ride it out for two weeks. Am in week one. This started on Tuesday.

1st Literary Agent Rejection Letter-Is it A Form letter? You tell me what U think!

This has to do with my first book, a book about ‘Prozac Poopout’ and Tardive Dyskinesia, a movement disorder caused by antipsychotics, usually from long-term use. National Alliance of Mental Illness, (NAMI) says if you take Abilify or Seroquel, Latuda, Geodon, Risperdal, Melleril, Thorazine, Haldol, Zyprexa (or whatever), for over a decade, you stand a 30-50% chance of getting TD…but try bringing up that issue at one of their “Connection” support group meetings……So Anyway……

 

I recently did a public speaking event on my topic (Tardive Dyskinesia awareness, prevention, treatment and my experience with it) at the American Psychiatric Association (APA)’s annual shindig in New York City. My book isn’t finished, but since many agents and publishers are based in New York, I figured I’d send my colorful flyer with color picture and a sample of my work, 3 short chapters. I reached out to 12 agents and five publishers. I got one agent auto-reply from a lady at a mid-level agency, heard nothing from the publishers and got this one today, from a literary rep at Folio, one of the top ten agencies, (from what I can see)

(BTW, Both of these literary reps expressed an interest in medicine/health/current affairs and psychology.  My work falls squarely into all three, plus women’s health and women’s issues). Anyway, here’s my very first letter of rejection ……………..

Dear Allison,
I want to thank you personally for giving me the opportunity to read your work. I understand the querying process can be difficult at times, and want you to know how seriously we consider each project we receive at Folio. I am sorry to say, though, that unfortunately I do not have a place on my current list to take this on.
Please keep in mind that every agent has different tastes and sensibilities and more or less bandwidth to take on new projects at any given time.  And this is a crazily subjective business. What does not work for one agent may work perfectly for another, and I encourage you to continue your search for someone to champion your work, and trust you will find the agent (or publisher) your work absolutely clicks with.
Please know I wish you all the best,

Jeff