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.

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

REJECTION LETTER!

 

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. The first manuscript of my book is not yet finished, but since so many literary agents are in New York, especially the city, I figured I’d send my colorful flyer with color picture and a sample of my work, 3 short chapters. Eventually, I’ll get around to ‘test marketing’ those on here. I reached out to 12 agents and five publishers. I got one agent auto-reply from a lady at a mid-level firm, and I got this one from a rep at Folio, one of the top ten literary agencies, (from what I can tell) 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, since Tardive Dyskinesia affects women 2-4.5 times more often as it does men. It also prefers minorities. 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

 

Speaking re Tardive Dyskinesia at American Psychiatric Association Conference NYC

 

Hi. I’m Allison Strong. I am speaking on my incendiary, suppressed, most combustible topic, Tardive Dyskinesia, at the APA in New York City. Oh, I already said that, right? I used to be a tireless self promoter, now I’m in my fifties would rather lazily bingewatch Lifetime’s “Mary Kills People” (ER doc by day, Euthanasia Doc by night)…the Canadian version of “Good Behavior,” sort of. Or play ‘hairties’ with my kats, Jazzykat, the black one, and Whitekat, the white one. Whitekat is a little scardiekat, but she likes to jump in the air and catch the hairties like a wide receiver on a football team. So now, you know I’m all about kats. Always have been a horse person and a Kat person.

 

If you’re going to APA, look me up at the Marriot.

Re “Gold Standard Brand Ambassador” in New York Times

 

Yesterday,  I read the very first artistic/commercial collaboration of note was the

decades long dance between the late designer Givenchy and actor Audrey Hepburn.

Their goals dovetailed. She needed style…He needed a muse.

Partnerships of this nature intrigue me. But they begin from within.

If we’re writing books or articles, promoting our consulting services, selling jewelry on Etsy…no matter what we’re doing, even if we’re promoting a food or drug product that’s not super ‘glamorous,’ or Red Carpet-Hollywood,  the ‘collaboration’ begins in our hearts and minds.

What do we tell ourselves when we’re thinking about life? Whatever that is…it determines who’ll be drawn to us, since like attracts like.

It’s a law of the universe.  We all need dancer partners.  No one gets rich (or famous, for that matter) by themselves.

Even Mark Zuckerberg.

‘Prozac Poopout’ and Tardive Dyskinesia

 

If you’d have told me when I was diagnosed, in 1989, with bipolar disorder and put on Tegretol and Prozac, that my Prozac would mysteriously ‘poop out’ on me and drive me to psychotic depression, I’d have told you that you didn’t know me very well. I was too smart to let that happen.

If you’d told me I’d end up on antipsychotic medicine marketed and packaged sans the scary sounding word ‘antipsychotic;’ later developing Tardive Dyskinesia, I’d ask you what you were smoking.

Well, all these things did happen and the six years of navigating a series of numbskull neurologists who couldn’t (or wouldn’t) diagnose me, while class action lawsuits against Geodon ruled my search result box, was not a high note in my life. I barely survived the indifference and the sleepless nights, which for a bipolar like me, are a threat to mental stability.

 

For the first year I went without a diagnosis because no one was willing to ‘step in it,’….but eventually, I got a diagnosis and a dire prognosis from the top guy in town. “You’re Hopeless,” he said. “You need to learn to ‘suck it up.'”

Yeah, and it got worse before it got better. My six year search for information and a doctor with the skill set to help me taught me more than I ever wanted to know about an ever faster moving FDA, sweeping changes in clinical research that lend a whole new meaning to the words ‘private,’ and ‘for profit’….things any consumer of our healthcare system should know before making decisions about what medicines they want to take. I wish I’d known then what I know now.

 

But then, I wouldn’t have anything to tell you…because TD would never have happened to me. Not all atypicals are alike with regards to their side effects…and comparative, head-to-head research of antipsychotics and atypical antipsychotics are all available online, hiding in plain sight.

It’s just a question of knowing where to look.

It’s hard reliving it, as I try to slog through the writing of my book, “All shook Up from my Sedatives: A Tardive Dyskinesiac Talks Back,” and yet I soldier on, because someone has to speak up for us. Our population has tripled in the last five years; reflecting an explosion in the prescription of the antipsychotics that cause it.

Antipsychotics are not just medicines for ‘crazy’ people anymore. Antipsychotics are being used for aids, adhd, autism, dementia-related agitation, and I haven’t even gotten through with the ‘A’s yet.

 

‘Prozac Poopout’ and Tardive Dyskinesia

 

If you’d have told me when I was diagnosed, in 1989, with bipolar disorder and put on Tegretol and Prozac, that my Prozac would mysteriously ‘poop out’ on me and drive me to psychotic depression, I’d have told you that you didn’t know me very well. I was too smart to let that happen.

If you’d told me I’d end up on antipsychotic medicine marketed and packaged sans the scary sounding word ‘antipsychotic;’ later developing Tardive Dyskinesia, I’d ask you what you were smoking.

Well, all these things did happen and the six years of navigating a series of numbskull neurologists who couldn’t (or wouldn’t) diagnose me, while class action lawsuits against Geodon ruled my search result box, was not a high note in my life. I barely survived the indifference and the sleepless nights, which for a bipolar like me, are a threat to mental stability.

 

For the first year I went without a diagnosis because no one was willing to ‘step in it,’….but eventually, I got a diagnosis and a dire prognosis from the top guy in town. “You’re Hopeless,” he said. “You need to learn to ‘suck it up.'”

Yeah, and it got worse before it got better. My six year search for information and a doctor with the skill set to help me taught me more than I ever wanted to know about an ever faster moving FDA, sweeping changes in clinical research that lend a whole new meaning to the words ‘private,’ and ‘for profit’….things any consumer of our healthcare system should know before making decisions about what medicines they want to take. I wish I’d known then what I know now.

 

But then, I wouldn’t have anything to tell you…because TD would never have happened to me. Not all atypicals are alike with regards to their side effects…and comparative, head-to-head research of antipsychotics and atypical antipsychotics are all available online, hiding in plain sight.

It’s just a question of knowing where to look.

It’s hard reliving it, as I try to slog through the writing of my book, “All shook Up from my Sedatives: A Tardive Dyskinesiac Talks Back,” and yet I soldier on, because someone has to speak up for us. Our population has tripled in the last five years; reflecting an explosion in the prescription of the antipsychotics that cause it.

Antipsychotics are not just medicines for ‘crazy’ people anymore. Antipsychotics are being used for aids, adhd, autism, dementia-related agitation, and I haven’t even gotten through with the ‘A’s yet.

 

Extremists on the Opiate Epidemic

 

I agree, other than the catastrophic wave of crack cocaine and all its’ collateral damage, this ‘epidemic’ is the likes of which I’ve never seen. I don’t even understand it. Last week, in the New York Times, one of the letters to the editor called for a complete 90-day suspension of ALL prescription of opiods to outpatients. This would limit pain relief to patients in the hospital.

Something this extreme would likely never happen, because the drug lobbies are too powerful. However, it’s scary anyone is even contemplating it!

I’ve had chronic low back pain since 2004. I’ve tried 3 types of physical therapy, chiropractic, acupuncture 2x, and 10 different ‘interventional’ pain therapy injections.

Expensive and ineffective.

The last ‘test,’ which was for Coolief, worked and gave me 40 hours of 100% pain relief, but Medicare doesn’t cover it. I’m no longer on opiates, thanks to safer alternatives with less side effects.

However, if they want to put a dent in this epidemic, Medicare and insurance need to cover the denervation procedures that work, otherwise all this talk is nothing but scare tactics and hot air.

Me, Speaking on Tardive in San Diego at American Psychiatric Association

Oh, my god. That’s the side of my face I can’t stand. Not only that, I was carrying 20 lb of what my friend D calls ‘seroquel spiderbelly.’ So I kept it black and basic.

Just the story. Just the facts. And you know what? I cried a little on stage….or tried NOT to cry, but someone has to have compassion for me. And for the rest of us out there. We need a Tardive Dyskinesia national advocacy group.

Guess who is thinking about starting one? I am on disability insurance, can’t earn money, and am tired of seeing my name in print.

So, this cause, as dreary as it is, deserves someone to reassure others they are not alone and they can get better, even if their doctor is telling them to  ‘learn to live with it.’

Everyone always says it would be so much better for us if we had a ‘single payer’ system. But I’m here to tell you, if you have a difficult problem…if you live in a country like England, you could never see a total of 9 neurologists over the course of 5 years. So….I’m grateful for Medicare and Disability, I guess.

I just read another study, this one in Britain, based on 900 studies. They estimate the risk rate….this is called ‘incidence rate’ at 20% in a patient’s first year, and then add 3% more for every year of antipsychotic use. And not all atypical antipsychotics are created equal, either. Some are way more causal than others.

I’m not saying these are bad drugs, but do we all need them?

I believe I could have handled my bipolar disorder without them. Just good mood stabilizers. That’s it. Next Stop?

New Orleans, and my husband is coming with me. And I’m going to speak.

Deplaned for ‘whatever’ reason story got picked up Psych Central

 

I wonder if this link is live. I wonder if I am alive. Today I worked tons of hours on my book. Then, by accident, I stumbled upon someone listed in someone else’s book that I was looking for. It has to do with this organization, similar to “Dr’s Without Borders,” but the hinterlands these Americans go into are the Appalachians.  They provide free medical to the people who can’t afford it, which is pretty much everyone. I just hope they don’t get detained at the airport. The way it’s going, it could happen to anyone, anytime.

https://psychcentral.com/blog/archives/2017/08/13/bipolar-woman-targeted-flagged-dragged-and-deplaned/