Discriminated Against from Local Nami…still trying here but no response

This is a letter I wrote to a woman on the board of directors of NAMI Broward County

It’s hard when they ask for volunteers again and again but don’t return my calls or respond to my application. Ever since Tardive Dyskinesia, people see me differently, even though I exhibit no symptoms. I’m not even angry about any of this…..it just is. Maybe I’m meant for something else.

 

 

hi Edna
Thank you for emailing me back.

One of the reasons I was interested in volunteering for NAMi is to understand how our government works. The difference between an’ act’  ‘ballot initiative,’ etc. I have seen a few things lately that do not seem fair. Especially in our state. I think some activism is aggressive, silly and preaching to the choir. Like Hashtag campaigns and protests outside gates of pharmacy companies.

I’m speaking with John Rother at National Healthcare Coalition in DC, the FDA’s Orphan Drug Development Department and other people on this business of skyrocketing Generic Prices as I am doing a a consumer article about how to predict and prepare for things like ER Depakote shooting up to 1700 because it’s been repurposed and reclassified ‘Orphan.’ My Tardive med is now 300 a month and it’s an ancient generic like Klonopin. I want to volunteer in more ways than writing and John Rother told me to hook up with local Nami. It’s not for lack of trying on my part.

Nami knows how to advocate effectively. Not only do I want to write a series “Advocacy Made Easy,” I hoped to soak up Nami’s wisdom by being a ‘part’ of.

I did call David and over the phone fill out an application. Are you aware this is the fourth time I have tried to volunteer for my local NAMI?

In the past, I have started, publicized, nurtured new peer support meetings and at AA they still ask for me to come chair meetings because I am vigilant, spontaneous and can think on my feet. This is from two decades of live radio. That is the volunteer activity I’m best at.

Can you imagine attending ‘connections’ meetings, hearing over and over the need for volunteers to facilitate new ‘connections’ meetings and to call the office four times and have the calls never returned?

Edna, I feel I am being discriminated against for having tardive dyskinesia and speaking about it. In addition adhd impulsivity, before it was under control….let’s put it this way. I volunteered for Rebels and nurtured Eating Disorders Anonymous, Dual Recovery and finally OA before I was knocked over by tardive. I am not angry about it, I’m getting used to it.

It took three years to get it under control. I couldn’t drive or sign my name for three years. I must have gone on twenty docs appointments and ER four times.

It took two more years to get over my anger and grief over the process and stigma I encounter and still do within the medical and psychiatric community. When I came back around Rebel’s Decided I am unstable. Yet other volunteers of theirs call me to say they are being followed by the CIA and one of the secretly slid me a bottle full of narcotics wrapped in a New York Times.

I do telephone outreach for International Bipolar Foundation but I soooo wish I could have a peer support meeting. I might get involved with DBSA and try to get space donated from the Hollywood Beach Community Center and have a DBSA meeting in South Broward, as there isn’t one. I will have to drive up to Margate and Pompano, but I can do this.

Thanks for being kind to me and letting me know there was at least one person within Nami who cares.

Shkreli piece & my response in Science Translational Medicine. If FDA is transparent, then answer this!

In the Senate Oversight committee and gov reform hearing last week, the guy they’re calling my favorite ‘bad boy,’ of big pharma, Martin Shkreli proved he is finally listening to someone other than his ego. He keeps taking the fifth when he is asked if he broke the law or did anything he thinks illegal. He’s listening to council. Then he goes home, goes on Twitter and tweets, and I quote ‘I can’t believe imbeciles like this represent us and run our government” He’s the one who bought exclusive rights to Duraprim, an ancient antiparasitic, got ‘Orphan’ reclassification and jacked the price 50 fold, to 750.00 a pill.

 

Why didn’t anyone mention the ‘Orphan’ protected status and how it is being used on old generics like the one I’m on for the Parkinson’s like side effect of psych meds called ‘Tardive Dyskinesia,’ considered and orphan disease? My med is 300 a month and all it is is a longer acting benzo like Klonopin that’s not rarely used. Now it’s out of reach and I’m shaking like a leaf from my disorder, trying to figure out for an article I’m writing whether or not pending ‘Orphan’ application are a matter of public record. I’m on more generics. Some of them may become ‘Orphan,’ now that older drugs with R&D well behind them are being afforded this protected status. So, FDA, Tim Conte, (who is the head of FDA’s Orphan Division and is on a viewable video claiming it’s only for NEW Drugs), here’s what I want to know: can consumers find out and have a ‘heads up’ on possible future price hikes on drugs they depend on or not?

 

Because if we knew in advance about possible future price hikes we could have a backup plan in place. I was caught offguard and it cost me several hundred dollars and in the meantime I’m going without. Allison

Self Publishing Woes

I’m writing a book. Who isn’t. I actually have five or six. Three in a series sort of YA bipolar disc jockey juggles illness, men, rapid cycling and alcohol on occasion. Father says to me the other day, “You need a Project. Find out how much it will cost, a-z to get your book published and I’ll write a check. I hadn’t expected such but XLibris was having a sale.

Based on what my friends have told me, 399.99 plus a plot/pace/content assessment is going to be too little and I’ll get hit up for more fees down the line and I told my consultant that I had been warned and asked her to really dig deep and tell me the price. She got argumentative and angry. It didn’t help matters at all that my foot got broken and hurt badly.

My last conversation with this person was that she felt insulted and when it came down to it, she though I’d need 25k to get a book out there, but she had politely refrained from throwing this in my face. Don’t you think that 399.00 plus 199.00 and the sum total of 25k are a little far off?  Where were all these fees coming from? Wasn’t she being unethical to ‘undersell me’ something for 600.00 that was going to end up costing our family 25k?  Then she got into this whole thing about how Authorhouse and Xlibris are very different (I had previously spoken to Authorhouse) and that’s why she chose Xlibris. I asked her about 12 questions about Print on Demand, and wondered why she had not brought up marketing guidance. You got me right, they provide no marketing or advertising for you for free, but for an additional fee, they can arrange to have your book reviewed and so forth.Big smile, shorthairclip

The need for balance to banish the bad.

You guys know that I make a real effort to take in as much as I give out. In other words, I take my time to read my entire Facebook feed and just comment rather than post, sometimes. Sometimes it’s cool to be a supporting player and get the focus off of myself. A regular intake of Alternative Music, both new and old, and some great classic tunes, like Stealer’s Wheel, “Stuck in the Middle with You,” or Creedence, or the Rolling Stones rev up my workouts at the gym as I increase my weights and read about world events. I am a total film buff. On Sunday I put out my ‘new and notable’ list as well as a few that fell between the cracks and slipped away to streaming or video.

I left out a few movies!!!!

Also came out on Friday are:

“I smile Back”

Rock the Casbah with Bill Murray

Victoria (german Heist Film)

Heart of a Dog by alternative artist and singer Laurie Anderson

Beasts of no Nation, a Netflix original movie.

I also wanted to add that I really just want to sign up for Cinemax so I can watch the new episodes of Knick, the 1900’s medical/addiction/New York City drama…it’s “House on Heroin,” literally. Clive Owen is as good as when he played Ernest Hemingway in that HBO movie with Nicole Kidman. But back to Cinemax, it’s another twenty bucks a month and the episodes are not all streamed together, they are aired in typical fashion, once every Friday at 10pm. The black hole. They’ll win the ratings sweeps no doubt. I investigated and Cinemax has about five original series that look intriguing, if you are into crime/spy and supernatural stuff. The hubby says no. I need to watch Clive Owen destroy himself while he saves lives as a surgeon back when they were still ‘bleeding’ people and C-sections were a new idea. I also picked up “WordPress For Dummies” and Steven King “On Writing.”  An entire Sunday edition of The New York Times awaits me. I’m researching the researchers who are trying to come up with preventative treatment for the unfortunate side effects of antipsychotics, weight gain and diabetes type two, as I struggle with this progression. But wait….I meant this post to be about light and fluffy escape modalities so off I go.