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.

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.

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.

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

 

Writing a book, keeping it pure

My ‘better living through chemistry’ lifestyle, even though I see myself as a willing, compliant patient (maybe that’s the problem) has gotten me into some scrapes, side effect wise. Chronic Dry Eye, Chronic Pain from Tardive Dyskinesia, TD itself, loss of libido, cognitive impairment especially with regards to computer stuff, weight gain and have been beating back Diabetes Type 2 for the better part of a decade. I can’t take injectibles like Victoza, because they cause other side effects. I’m trying to write a book that’s helpful, authentic and accurate, but am always taking stock of my anger. There’s only so much rage on the page that people are willing to put up with. Anger is exhausting to read and offers little redemption anyway, don’t you agree? I’ve had bipolar for 30 years, have stayed out of the psych ward for twenty, but I’d go in if I felt I had to in order to stay safe. I’m paying a biochemical price for that. The trick of this game is to make it out alive…to make it through one more day.

Ryan Murphy (and “Pose”) Redux

  There was an incredible story in “The New Yorker” about Ryan Murphy. I’m super stoked about his upcoming show on FX, “Pose.” When I behold his work, whether it was the compassionate view of a person with a personality disorder in “American Crime Story: Versace” or Sarah Paulson as Marcia Clark in “‘The People vs O.J. Simpson,” and for me it began with the show “Nip Tuck” about two plastic surgeons in love with the same woman…I can rest easy when I think of Ryan. I can put down the cudgel, the heavy gavel I hold.

 

Ahh. I’ll relax and let Mr. Murphy speak for the marginalized. He is soooo good at that. And his workforce is 50-50 diverse….and also…it didn’t come easy for him. In his early career, not everyone ‘got’ him. Some people made fun of him. He’s even produced pilots that didn’t get picked up by that network, for someone like him, that’s like someone rejecting YOU.

In other entertainment news, Julia Roberts elder brother, Eric, I learned has been in 700 movies. He does a ton of Russian movies. Also Lifetime movies. and “Queen Sugar” is back on OWN. Oprah and Ava again!

Desperately Seeking Slater (author Dr. Lauren Slater) “Blue Dreams: The Science and the Story of the Drugs that Change our Minds”

does anyone remember the Madonna film “Desperately Seeking Susan?” Well, I’m desperately seeking the author of this book…can’t seem to find a way to contact her electronically …and I am pretty sure she’ll be at my upcoming conference. BTW,

I just read this book.  If you are a woman with a mental health issue or are close to someone with same, you must read this book. Audaciously, she weaves memoir and science, something many authors say can’t be done.

Then…if this isn’t stranger than fiction…..She’s got all my diagnoses, eating disorder, borderline, bipolar, and more. She’s got all my side effects…too….which if you’ve ever followed my blogs, are legend. She’s a wonderful author and if you’ve never read one of her books, “Prozac Diary” is wonderful and even deals with Prozac Poopout, a topic some publishers won’t touch with a ten foot pole.

Anyway, I’m about to go to New York to speak about Tardive Dyskinesia at the American Psychiatric Association

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.

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.