A Former Drug Addict and Stronger for It

This is why I’m still alive….because I’m a former drug addict and stronger for it.

Some people might call the following a manipulation of the system, but I regard this as a tactfully maneuvered agreement.

Because of all my medical conditions (bipolar disorder, psoriasis, chronic pain, prediabetic, etc.) and side effects (Including chronic dry eye, high cholesterol, constipation, Tardive Dyskinesia), …I’m on a long list of medications, most of which I have to fight my insurance company for. I’m a worthy adversary, just in case you’re wondering…they probably hate me. I cost them money and eat up their time with grievances and expedited appeals…..

This reminds me of the Nirvana lament, (song) “Heart Shaped Box” that goes, “Hey,Wait, I’ve got a new Complaint” LOL.

Right this second, I’m on hold for forty minutes now, as I blog this, with my Medicare Part D prescription drug plan, Silverscript/Caremark/CVS.

I have what some people call “Tardive Dysphoria,” also called “Prozac Poopout,” (poor Eli Lilly and their Green and Off White Giant, it was so spectacularly successful, when the pendulum swung the other way, Prozac ended up with this moniker, in a classic case of branding in reverse)…

Anyway, I took Prozac for 8 great years and then….it stopped working for me. This has been the normal course of my illness since 1997. My antidepressants burn out and it’s severe, dramatic. Does this sound familiar? I’m functional, but barely breathing until I find a new antidepressant….basically, we rotate them, and sometimes, I have to take an entire month off of them to allow my brain to ‘reset.’

Antidepressant burnout is actually more common than not…they even have a rating scale for it. However, it’s not discussed…due to doctors and drug companies not wanting to set off the reverse placebo effect….plus, it does nothing for brand loyalty.

Anyway, I take the generic Pristiq for three weeks, and I start having notions of hanging myself…vivid and articulate like.

So I’m asking myself: What’s changed???  Luckily, I’m a Squirrel, and stash handfuls of RX drugs for just such an occasion. I pulled all the generic Pristiq out of my trays and replaced it with expired Pristiq 100 mg samples, some of which are cut up. (They tell you never to cut up meds, but I like to stretch them, especially right about now)  Within two days, I bounced right back. No more wondering whether a belt or a rope would be better to dangle from.

I hustled in to see my psychiatrist of 21 years, who did a ‘formulary exception request,’ which was immediately approved. The problem was, I couldn’t get any new Pristiq because I’d just gotten the generic junk two weeks ago.

My 45 minutes on hold with CVS was rewarded, I didn’t even have to ask for a supervisor. They did an override and I can pick some more up tomorrow. I wish I could tell you that was my only medical encounter this week…..far from it.

But still….today, tonight especially, I won.  I’m still alive, propelled by my expired Pristiq, and I’m grateful for my fortitude. The skills of a former drug addict came in handy tonight. You can take the dope out of the fiend, but not the fiend out of the dope.

Is my Generic Pristiq inferior to name brand? CVS came thru….thank Goodness!

Some people might call this manipulation of the system, but I regard this as a tactfully maneuvered agreement.

Because of all my medical conditions (bipolar disorder, psoriasis, chronic pain, prediabetic, etc.) and side effects (Including chronic dry eye, high cholesterol, constipation, Tardive Dyskinesia), …I’m on a long list of medications, most of which I have to fight my insurance company for. I’m a worthy adversary, just in case you’re wondering…they probably hate me. I cost them money and eat up their time with grievances and expedited appeals…..reminds me of the Nirvana Song “Heart Shaped Box” that goes, “Hey,Wait, I’ve got a new Complaint” LOL.

Right this second, I’m on hold for forty minutes now, as I blog this, with my Medicare Part D prescription drug plan, Silverscript/Caremark/CVS.

I have what some people call “Tardive Dysphoria,” also called “Prozac Poopout,” (poor Eli Lilly and their Green and Off White Giant, it was so spectacularly successful, when the pendulum swung the other way, Prozac ended up with this moniker, in a classic case of branding in reverse)…

Anyway, I took Prozac for 8 great years and then….it stopped working for me. This has been the normal course of my illness since 1997. My antidepressants burn out and it’s severe, dramatic. Does this sound familiar? I’m functional, but barely breathing until I find a new antidepressant….basically, we rotate them, and sometimes, I have to take an entire month off of them to allow my brain to ‘reset.’

Antidepressant burnout is actually more common than not…they even have a rating scale for it. However, it’s not discussed…due to doctors and drug companies not wanting to set off the reverse placebo effect….plus, it does nothing for brand loyalty.

Anyway, I take the generic Pristiq for three weeks, and I start having notions of hanging myself…vivid and articulate like.

So I’m asking myself: What’s changed???  Luckily, I’m a Squirrel, and stash handfuls of RX drugs for just such an occasion. I pulled all the generic Pristiq out of my trays and replaced it with expired Pristiq 100 mg samples, some of which are cut up. (They tell you never to cut up meds, but I like to stretch them, especially right about now)  Within two days, I bounced right back. No more wondering whether a belt or a rope would be better to dangle from.

I hustled in to see my psychiatrist of 21 years, who did a ‘formulary exception request,’ which was immediately approved. The problem was, I couldn’t get any new Pristiq because I’d just gotten the generic junk two weeks ago.

My 45 minutes on hold with CVS was rewarded, I didn’t even have to ask for a supervisor. They did an override and I can pick some more up tomorrow. I wish I could tell you that was my only medical encounter this week…..far from it.

But still….today, tonight especially, I won.  I’m still alive, propelled by my expired Pristiq, and I’m grateful for my fortitude. The skills of a former drug addict came in handy tonight. You can take the dope out of the fiend, but not the fiend out of the dope.

Is my Generic Pristiq inferior to name brand? CVS came thru….thank Goodness!

Some people might call this manipulation of the system, but I regard this as a tactfully maneuvered agreement.

Because of all my medical conditions (bipolar disorder, psoriasis, chronic pain, prediabetic, etc.) and side effects (Including chronic dry eye, high cholesterol, constipation, Tardive Dyskinesia), …I’m on a long list of medications, most of which I have to fight my insurance company for. I’m a worthy adversary, just in case you’re wondering…they probably hate me. I cost them money and eat up their time with grievances and expedited appeals…..reminds me of the Nirvana Song “Heart Shaped Box” that goes, “Hey,Wait, I’ve got a new Complaint” LOL.

Right this second, I’m on hold for forty minutes now, as I blog this, with my Medicare Part D prescription drug plan, Silverscript/Caremark/CVS.

I have what some people call “Tardive Dysphoria,” also called “Prozac Poopout,” (poor Eli Lilly and their Green and Off White Giant, it was so spectacularly successful, when the pendulum swung the other way, Prozac ended up with this moniker, in a classic case of branding in reverse)…

Anyway, I took Prozac for 8 great years and then….it stopped working for me. This has been the normal course of my illness since 1997. My antidepressants burn out and it’s severe, dramatic. Does this sound familiar? I’m functional, but barely breathing until I find a new antidepressant….basically, we rotate them, and sometimes, I have to take an entire month off of them to allow my brain to ‘reset.’

Antidepressant burnout is actually more common than not…they even have a rating scale for it. However, it’s not discussed…due to doctors and drug companies not wanting to set off the reverse placebo effect….plus, it does nothing for brand loyalty.

Anyway, I take the generic Pristiq for three weeks, and I start having notions of hanging myself…vivid and articulate like.

So I’m asking myself: What’s changed???  Luckily, I’m a Squirrel, and stash handfuls of RX drugs for just such an occasion. I pulled all the generic Pristiq out of my trays and replaced it with expired Pristiq 100 mg samples, some of which are cut up. (They tell you never to cut up meds, but I like to stretch them, especially right about now)  Within two days, I bounced right back. No more wondering whether a belt or a rope would be better to dangle from.

I hustled in to see my psychiatrist of 21 years, who did a ‘formulary exception request,’ which was immediately approved. The problem was, I couldn’t get any new Pristiq because I’d just gotten the generic junk two weeks ago.

My 45 minutes on hold with CVS was rewarded, I didn’t even have to ask for a supervisor. They did an override and I can pick some more up tomorrow. I wish I could tell you that was my only medical encounter this week…..far from it.

But still….today, tonight especially, I won.  I’m still alive, propelled by my expired Pristiq, and I’m grateful for my fortitude. The skills of a former drug addict came in handy tonight. You can take the dope out of the fiend, but not the fiend out of the dope.

Mental Illness Awareness and Patient Advocacy

The term ‘Mental Health’ is unfortunate, because the last time I looked, the brain was connected to the body, right? Hardy Har Har. Actually, Mental Health Parity, where a person with a mental health condition receives equal insurance coverage as a person with say…..cardiovascular illness or diabetes, that’s where we want to go with this.

 

On advocacy opportunities:

 

If you have a medical or mental health condition you have struggled with, a medical condition, and you think you’d be a good advocate, a note of warning: This will NOT help you obtain the medicine except to possibly guide you to charitable foundations who can provide copayment assistance grants, like National Organization of Rare Diseases, (NORD) who helps me with my Tardive Dyskinesia Medicine. The drug company can NOT be involved in that process, however.

 

You can do Twitter Outreach. Google the Drug Company and look for key players or even local drug reps on social media. When doing Twitter outreach, you can direct message the manufacturers  of the medication that applies to your illness if you want to get involved.

Remember, however, that this type of work is highly regulated, and you might rather do something more low key and less ‘legal,’ so to speak.

Mental Illness Awareness Week and Advocacy Opportunities in General

 

 

One time I applied for a patient advocacy, it was a sorta kinda ‘job’….(often I get paid what’s called an ‘honorarium,’ it’s not always a lot, but it’s nice to be recognized, and the money helps pay for things I wouldn’t otherwise be able to afford).

Anyway, my first contact was with the Drug Company rep, who said they were indeed looking for people and turned me over to a big PR firm who specializes in Pharma and Patient Ambassadors or ‘Patient Influencers,’ as we are often called.

The first step was to get my Medicare part D to make a ‘formulary exception request’ so I could have access to this medicine. This particular Medicine is very expensive, so my Medicare Part D denied it over and over again. I filed grievances and did expedited appeals, and got rather crafty at that. I pestered my insurance long and hard and finally, they agreed to pay for the drug, so I began to pursue this opportunity again. It didn’t work out, but the lady I interviewed with on a conference call gave me some hints as to how to find more of this work.

 

One of the ways she listed was to go on specific medication or drug company websites and if a prompt comes up to ‘Tell Your Story,’ to go ahead and do that, give them the gratis content they seek, because they also look for patient advocates via these sites and the stories we tell. The more colorful a story, with lots of hurdles to overcome, the better. It’s even ok to include dialogue and description in these stories so that the drug company knows what you were up against in your pursuit of health and wellness, which is not always easy. In fact, it’s never easy. By sharing our struggles, other patients and physicians are often emboldened to tell their own, which is really what it’s all about.

Patient Activists Re Schizophrenia and Tardive Dyskinesia

It’s not the “Allison Strong Show:”

One of the things I’m learning about this work is that I need to be more of a leader. Other people want to ‘talk shop’ and compare notes, which can lead to gossip and comparisons. I hate it when I compare myself to others, I always come up short.

 

That being said, there is this incredible lady who is running a foundation for Schizophrenia research, treatment and recovery. Lots of the content on the site is holistic, or functional, nutritional psychological….it’s not ALL about medicine.

If you are interested in any of this you can find Bethany Yeiser at Curesz Foundation. She also wrote an incredible book, called “Mind Estranged” about her recovery from Schizophrenia.

 

This particular video is about a drug that I take, it does not aggravate my neurology the way the newer drugs did, I had less weight gain than I did on Seroquel, and in my humble opinion, this drug is woefully underused. Why? It’s not a new drug, not on patent, and therefore, no money going into marketing. Second reason: Monthly blood work to guard against a very rare, but fatal side effect.

 

But also, Clozaril almost never causes Tardive Dyskinesia. I wish I’d been on it from the  beginning. So worth it. My life is better today because of it.

Mental Illness Awareness Week and Patient Advocacy…part of a series

Above…just a real picture of a real human being, shaggy bottle dyed red hair that badly needs cutting….. and all.

We all want to improve our lives and help other people along the way if we think we have something to pass on, a situation we survived. I have several of those. Tardive Dyskinesia. Eating Disorder. Depression, Addiction….Allisonism, if you want to know the truth. But I told you I’d talk to you about how you can get involved, so here’s where I’m coming from.

 

The opiod epidemic drives me crazy, because there are a bunch of people doing their best to bring it to a swift resolution who have absolutely no idea, from an experiential perspective, what it’s like to have pleasure, pain, euphoric recall, the power of suggestion, peer pressure and any number of other mental and emotional factors driving something that’s just so basic…..pleasure, unequaled bliss, is how I remember it.  As excruciatingly difficult as it is, we can reclaim our lives. If I’ve done it so can anyone else. If I get an opportunity to speak to people in any sort of ‘recovery’ setting, (I hate the word ‘sober,’ and the word ‘recovery’ but that’s just me) I will jump to get there, no matter what. Sometimes the one-size-fits-all box of abstinence only 12 step programs gets in my craw, but I get over it. If it weren’t for the rooms of AA, who knows, I might not have made it.

So….here are a few things I picked up from a nice lady at a PR firm who thoroughly vetted me (job references, an interview conference call with their legal team)…when it turned out that for regulatory and legal reasons, they were NOT going to hire me, after all. It was a great experience. I learned a lot.

People at PR firms, casting directors, ad agencies, whoever is trying to promote a product, they are looking for that flash of inspiration that they need, they don’t know exactly what it is, but they recognize it when they see it. So you have to put yourself out there. Get connected with PATIENT COMMUNITIES, http://www.Health-Union.com and look for the health condition that might match a medication that is for that condition, whether you are taking it or not. Often times, we are hired for general “Disease Awareness” and asked to tell or blog or do a video about our story, irregardless of what medicines we are taking or intend to take in the future.

If they ask you to upload a picture, make it a ‘real person’ shot, not a glamour shot. They want someone who exudes beauty and humanity from within, it’s in the eyes, the smile, the tone of voice. I’ve got much more for you on this subject later. Let me know how you are doing with this, or if you think I’m full of shit. Sometimes I am.

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.