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.

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

 

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.

Computer wierdness

horse

What’s going on?

I was responding to an email and it just slipped away. I have to ask the sender, (a high -level neurologist I don’t want to pester) to resend. It’s not in deleted, sent, drafts…

Then I went to Tumblr and when I hit ‘post’ it wouldn’t post. It just quivered up at the top. I don’t know what the issue is.

Then, some days, my ‘attachment’ function works simply and easily, while other days I have to drag and drop and then on the worst days, I can’t do either and I have to put my stories in the body of the email.

I lost my grant for Tardive Medicine which makes me angry because the manufacturers of the agent that caused it should chip in at my extra expenses. I’m working on the chapter of the book “Where to Turn.”

Good Question. At least Google still works!

On the road with 3 sizes of Clothes

gainesvilletwo You would never know this by my tags  but packing for this trip to see my father on his farm was murder. First of all, my weight varies a great deal, largely due to my psych meds, namely clozaril. Other atypicals, like Seroquel and Zyprexa, among others, do this too. Thus, I have three sizes of clothes in my closet, and I had to FACE THE MONSTER when packing, and try them on, all while, trying not to get triggered when stuff didn’t fit. I made lists but I still spaced out and forgot to pack warm weather clothes for a heat wave in Kentucky. So we hat to hit a clothing store for some short sleeved shirts after the airport. Still, nothing  I wear is ever good enough for my father, and I’m never thin enough. This is sort of why, in addition to bipolar, I have an eating disorder too. More from the farm later.