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.

Opiod Epidemic-It’s not just about the Drugs

I have chronic pain and am no longer on opiods. (Safer, off-label, organic alternatives abound). I was on them off and on for years as a result of sports injuries from exercise bulimia. I loved high impact sports like running, tennis and professional beach volleyball.

I paid for my excesses. With interest.

In terms of the opiod epidemic, why not me? I have bipolar disorder and am the most addictive person I know. Somehow, I didn’t fall down the rabbit hole.

For me, Opiates were simply a means to a pain free life.

The side effects eventually made me uncomfortable enough to quit, which I did  alone in my home; assisted by a muscle relaxer.

Today I put up with more pain, but that’s ok with me.

I just worry about other people who are in even more pain than I am whose access will be cut due to this ‘epidemic’ fueled by criminals and addicts looking for a high.

When I say it’s not just about the drugs, I mean this: In the United States, a semi-synthetic opiate is being developed for use as an antidepressant.

What we need is a non addictive pain medicine for those of us who are legitimate pain patients. Why isn’t there one?

Opiod Epidemic-It’s not just about the Drugs

I have chronic pain and am no longer on opiods. (Safer, off-label, organic alternatives abound). I was on them off and on for years as a result of sports injuries from exercise bulimia. I loved high impact sports like running, tennis and professional beach volleyball.

I paid for my excesses. With interest.

In terms of the opiod epidemic, why not me? I have bipolar disorder and am the most addictive person I know. Somehow, I didn’t fall down the rabbit hole.

For me, Opiates were simply a means to a pain free life.

The side effects eventually made me uncomfortable enough to quit, which I did  alone in my home; assisted by a muscle relaxer.

Today I put up with more pain, but that’s ok with me.

I just worry about other people who are in even more pain than I am whose access will be cut due to this ‘epidemic’ fueled by criminals and addicts looking for a high.

When I say it’s not just about the drugs, I mean this: In the United States, a semi-synthetic opiate is being developed for use as an antidepressant.

What we need is a non addictive pain medicine for those of us who are legitimate pain patients. Why isn’t there one?

Need do DBT homework to get ‘sprung’ from Rikers Island Mind

The module I just completed in DBT was interpersonal communication. Some of it was painful, but this idea of escaping the irrational ’emotion’ mind is the key to feeling good about yourself and being able to make friends and enjoy life just a little. Not be so ‘intense.’

I’m not asking for much. I just don’t want my mind to be some sort of Shawshank Redemption.

And right now, it is.

BTW, with DBT, at first I was skeptical. A fad, buzzword, trend, catchall.

Nope. DBT lives up to the Hype. People in my group are in their 2nd, 3rd, 4th year.

Wowzaa.

Using more Music, writing about Music, for balance in my life.

 

 

For my life to be balanced, I’m working with a global literary and arts mag, called “The Missing Slate” writing reviews of musicians. I’m hoping my Afghan Whigs story gets picked up. Does anyone know who the Afghan Whigs are?

 

They wrote alot of stuff about the raw emotions of early sobriety and how tough it was to put your heart in someone else’s hands; only for it to be squished or stepped on. This happened to me, this 13th step business quite a bit. Even when we waited that mandatory year…”No relationships for the first year” sort of the same wisdom that spouts “Keep it Stupid Simple” and other hard core, black and white, derogatory statements.

And then they wonder why they’re losing the opiate war.

With our tired tactics and lousy combat strategies, it’s no wonder the body count keeps going up  even when opiate prescriptions are down.  “The Program” isn’t right for everyone, but it’s considered the ‘Gold Standard.’ And they never mention people who are in pain, like the late Prince. What are we going to tell them? That they have to live a life of agony so they can be ‘sober?”

I see alot of talking heads who know very little about how the crisis could be headed off at the pass. Discontinue the use of all immediate release drugs like Vicodin and Percocet. They’re far from beneign. They deliver the fatal dose by setting up ‘Set and Setting.’ Once someone puts it together that one of these pills for pain is good, they’ll swallow 3 and then a handful.

This doesn’t happen with extended release drugs unless the user/abuser monkeys with the time release mechanism in order to get an instant rush.

Recovery Beyond AA just want people to know there are options based on real science

sobertruthunbroken brain

 

Ironically, lately, I have been having to ‘work a program’ on a work situation. Acceptance, doing it their way. Removing my ego and proactive nature and allowing them to tell me what THEY want. Working on my ‘attitude of gratitude’ that I have a home to learn and grow in my writing.

Then, this post kinda knocking the program comes out. What am I supposed to do….ignore it? What do you think? Am I obnoxious or what?

http://www.bphope.com/blog/bipolar-strong-free-recovery-programs-beyond-the-twelve-steps/