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

 

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.

Faceless, Corporate CVS/Silverscript Part D Denying coverage of longtime medicine

I hate dealing with these huge corporations. They don’t care. We are numbers to them and they’ve decided my life is too expensive for them. Denial of benefits. Denial of expedited appeals process. Third party arbitrator that they own.

It happens to everyone. A medicine you really need is suddenly no longer covered. In my case, CVS deemed it not medically necessary for me to have Relistor, a drug I take when I really can’t go. I take tons of meds because of Tardive Dyskinesia and a microdose of Suboxone for Chronic pain, part of Tardive Dyskinesia.

Then I do an expedited appeal, and I’m denied again, and now……I’m sent to what’s supposedly third party arbitration, and it’s a phone number that nobody answers. Then I call Silverscript back, file a grievance and ask them when I will hear back on the grievance and they say, well, maybe thirty days. Then I ask about this third party arbitrator, Maximus, the one where no one answers the telephone, and there’s no timeline on when I might hear back from something I mail or fax. Just unbelievable.

 

I ask you…where do I lodge my next complaint?  This story about denial of benefits has been told time and again…..But I’m going to write about it….I just don’t know where.

 

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!

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

 

Jogging my memory re “Prozac Poopout” and other antidepressants I’ve tried

So, I’m writing this book “Heroine Chick: How I went from Sick and Side Affected to Becoming my own Personal Paramedic.” It’s about the Twin Freaks in my life, “Prozac Poopout” (antidepressant fatigue with several of them, not just Prozac) and Tardive Dyskinesia. During the three years when TD was uncontrolled, untreated, time, I had a couple more of these “Prozac Poopouts,” a term unkind to Eli Lilly’s product, who just happened to be the first SSRI on the scene, therefore, the first to “Poop Out.” I’ve had all sorts of antidepressant therapy over the last 30 years of bipolar, but recently, I got ahold of some old pharmacy receipts. My trip down RX memory lane reminded me of something I don’t remember: At one point, I’d been on Cymbalta. I don’t remember that!!!! I only filled the prescription 2x so it must not have worked for me. Also, I tried a Tricyclic, another type of antidepressant I’d forgotten that I’d tried. Only filled that script once, so it must not have worked well either.

The Silver Lining of it all:

For all my problems  with antidepressants only lasting for a fixed periods of time, I am grateful for some of the newer mood boosters. When one stops working, we switch to another, and some of the latest innovations dig me out in four days or less, not four to eight weeks. One time I was depressed for an entire year straight. Anyone relate to that?