Why I’ve been Dark…..

Yeah, I’m writing a book on my favorite topic, a cause so crying out for coverage I can’t stand it. It’s inflammatory, political. Side effect not sickness. Something (a product) causes it. Or supposedly does. (I’m open to other theories. You know how quickly medicine changes).

The topic I wrestle (or wrestle) with the most is Tardive Dyskinesia, a side effect of antipsychotics. It’s gaining traction on Television with “The Good Wife’s” Michael J Fox’s character, Louis Canning, who has TV, or the ‘patient/perp’ storylines on “Law and Order.” TD comes up there in a clarion call crying out that for the mentally ill in the criminal justice system, justice can never be served. Well, it can get dicey out here on the outside of penal institutions as well.  It’s just that no one wants to hear about it just yet.

 

Mentally healthy people get prescriptions for Antipsychotics. In 2015, 60 million RX’s for antipsychotics were written, (according to QuintilesIMS, a global tech and data solutions provider for the healthcare industry.

These drugs are helping, it seems, everything under the sun, from anorexia to insomnia, OCD and anxiety. Who doesn’t want to feel better, right? I take one myself.

 

 Glowingly ‘madvertised’ on TV with enervating names that suggest Results (Rexulti) The World is Your Oyster (Geodon) Able again, (Abilify)….and that’s fine. These are good drugs and certainly an improvement over the mood stabilizers that ruined people’s kidneys. The thing is…they work so fast and so fully we forget to check the flip side. And there always is one.

 

If you are having uncontrollable movements and think you might be on one of these drugs….there’s finally an FDA-approved treatment for our 55 plus year old, long neglected syndrome, Tardive Dyskinesia. Another one, a second, (when it rains it pours) is supposed to be FDA-approved (or not) on August 30th.

I’m going to try one.

If YOU think you need a TD specialist, as opposed to a TD ‘Denier’ to check you out (and there are TD ‘Deniers’ out there, sad to say), here is a state-by-state link.

 

Hopefully, it will help you out. And yeah, I’m still bipolar…pulled out of my last ditch in March. I think DBT skills really helped. More on that later.  It’s good to be back.

http://www.lifescript.com/doctor-directory/condition/n-neuroleptic-induced-tardive-dyskinesia.aspx

 

 

Why I’ve been Dark…..

 

The topic I wrestle (or wrestle) with the most is Tardive Dyskinesia, a side effect of antipsychotics. It’s gaining traction on Television with “The Good Wife’s” Michael J Fox’s character, Louis Canning, who has TV, or the ‘patient/perp’ storylines on “Law and Order.” TD comes up there in a clarion call crying out that for the mentally ill in the criminal justice system, justice can never be served. Well, it can get dicey out here on the outside of penal institutions as well.  It’s just that no one wants to hear about it just yet.

 

Mentally healthy people get prescriptions for Antipsychotics. In 2015, 60 million RX’s for antipsychotics were written, (according to QuintilesIMS, a global tech and data solutions provider for the healthcare industry.

These drugs are helping, it seems, everything under the sun, from anorexia to insomnia, OCD and anxiety. Who doesn’t want to feel better, right? I take one myself.

 

They are sooo glowingly ‘madvertised’ on TV with enervating names that suggest Results (Rexulti) The World is Your Oyster (Geodon) Able again, (Abilify)….and that’s fine. These are good drugs and certainly an improvement over the mood stabilizers that ruined people’s kidneys. The thing is…they work so fast and so fully we forget to check the flip side. And there always is one.

 

If you are having uncontrollable movements and think you might be on one of these drugs….there’s finally an FDA-approved treatment for our 55 plus year old, long neglected syndrome, Tardive Dyskinesia. Another one, a second, (when it rains it pours) is supposed to be FDA-approved (or not) on August 30th.

I’m going to try one.

If YOU think you need a TD specialist, as opposed to a TD ‘Denier’ to check you out (and there are TD ‘Deniers’ out there, sad to say), here is a state-by-state link.

 

Hopefully, it will help you out. And yeah, I’m still bipolar…pulled out of my last ditch in March. I think DBT skills really helped. More on that later.  It’s good to be back.

http://www.lifescript.com/doctor-directory/condition/n-neuroleptic-induced-tardive-dyskinesia.aspx

 

 

You won’t believe this gaffe….I’m lucky I survived

al in german dress and new earrings

 

 

The doctors think I might have an autoimmune condition called Sjogren’s disease. It’s treatable, not curable. I set up an appointment with the only rheumatology practice in my county. I waited for a month. I went and discovered I was not on the books. Now, I must wait another month.

My eye doctor prescribed something not on my insurance plan. Paperwork must be pushed. Prior authorization. No biggie, right? Wrong. Turns out they don’t do those.

The only way they’d consider it, the doctor said, is if I walked in the form myself and helped them fill it out. I called my Part D drug plan and they won’t send me a blank prior auth form. Against Policy, they say. I asked one girl four different times if she could send me the form and she didn’t give me a yes or no answer, just prattled on until I asked for a supervisor. And then another. And another. My medical records are mine. I should be able to get them sent to me return receipt, I’ll pay for the extra postage. Just send the MF’er so I can get my meds.

I’m the customer. This is Monopoly of CVS, Silverscript Part D, CVS mail order, CVS Drugstores (Hello can anyone spell Monopoly?) but where they get all their power (and profit) is as pharmacy benefit managers, (PBM’S).

They are the middlemen between pharmacy and wholesalers; cutting backdoor deals to drive customers to their stores by offering lower prices. Lots of people fall for this. It doesn’t matter if you’re rarely ill or are only on one or two meds.

I’m not in that category. With increased privatization of Medicaid and more and more private for profit Medicare ‘Disadvantage’ plans that don’t cover my University of Miami and University of Florida neurologists, quality and choice are going out the window. The small pharmacies are being driven out because the private hmo’s can make the rules.

And they didn’t even have to go to a ‘for profit’ Keiser or Trump University to get screwed. Come to think of it, neither do we.

Isn’t it funny, I tag bipolar but life’s challenges go way beyond that, I’m finding. I want to stay healthy but it takes a lot of work with all these side effects and aging.

Scary Tardive Types on the Internet-Damaged Goods: Do not Wear!

Photo of a photo

 

Beware, Be careful, if you do a search for tardive dyskinesia, there’s a ton of disinformation and misinformation.

I’m writing a centrist book on it…cause, risk factors, studies, promising new treatments,..how to get symptom management w/o wasting your time with self-claimed Tardive Specialists who don’t have a CLUE…I went through a lot and don’t want anyone else to. In fact, if it weren’t for all those doctors who said, “It’s psychosomatic,” or ‘You’ll Never Get Better, Suck it Up’ or…’You shouldn’t take the Valium,you might get hooked” or simply, ‘I have nothing to offer you,’ the book might never have been written.

I learned so much. Our numbers have doubled since I began my research two years ago. It’s still pretty rare though. That doesn’t mean our suffering is any less. you can’t measure misery. Don’t even try.

And as for finding and trying to talk with other patients,…there are some very damaged people. They are angry. Rageful.

Some of them have no symptom relief…their lives are decimated. They want to get even. With the world.

In the following case, I took a few blows to the skull before removing myself from the situation.

There is this one guy who is doing a facebook page based completely on his lawsuit.

He’s suing AstraZeneca (Seroquel), asking for punitive damages of 129 million. And that’s just for him. One person.

He thinks Seroquel is poison.

He’d managed to attract a famous lawyer.

The lawyer bailed.

Now I know why.

This guy called me a “Troll.” I’d never heard that term so I asked him what he meant.

He said he wasn’t feeling well that day. I tried to forget and move on.

Then, he gave me all his personal info, asked me to read every single post on his ‘tardive dyskinesia lawsuit’ facebook page and then write articles on and about him and his lawsuit…I write for three bipolar related publications. He  suggested others like…Reader’s Digest, WEB MD, I mean, I felt we were on the same team!

The next day I message him and He says… “PLZ LVE ME ALNE U NEED INPATNET PSYCH. U R THE TYPE of PERSN WHO NEEDS SEROQUEL” (This from a guy who thinks Seroquel is the devil).

He went on to say I was psychotic.

I do get hypomanic and type really fast. This is daunting to some. I’m working on it. Swear.

It hurt to have someone flip on me like this.

I was stunned, a stone where my stomach used to be. I knew I had to block, unfriend, the whole bit.

Husband says…Hon, it’s just the internet. There’s tons of crazy people out there.

Is it really like that? I swear, because he had tardive, I felt this bond…I’m a little on the lonely side to begin with…and then this.

It’s best that I discovered his true colors before attempting to write an article about him, that’s for sure!

Sometimes bad breaks are for the good.

Locked out of email due to Microsoft Mandatory ‘get on board’ changes.

gainesvilletwo

 

Last night nearly impossible to get in my email since Microsoft has this new ‘organizing’ platform they want us to ‘create account’ or ‘log into’

They think I have an hour or so to figure this out.  I don’t.

For my friends whom I contact through email, I’m so sorry.

Maybe being cut off of email for a day or two is a blessing of sorts.

Allison

I don’t know how this relates to Jason (Opinionated Man..OM) but I’ll try to post anyway.

allicatMe…a blogger named Allison

 

wellsThe Wells Fargo Ad that is outdated, ludicrous. New horses won’t do it.

Go back to starting block guys. Think like Don Draper in ‘Man Men.’ He had to market cigs after the surgeon general finally made his warning. The jig was up and it was time to reinvent the game and make new rules. Enter the age of ‘lifestyle ads’ like the Marlboro Man. It all started with the surgeon general sharing his truth about how dangerous cigarettes were. Blunt Truth. That’s it. Like Jason.  And from the surgeon general’s truth…the “Mad Men” Ad Men on Madison avenue figured out more creative ways to lie with images, not words.

Oh, Jason. (OM)

He’s the most successful blogger (in my eyes…) I know. Can I be him in my next life? Multicultural, probably bilingual…look at me, giving him all these attributes I wish I had. I barely know him.

I do know he’s going to make a big difference in social media…he’s going to rewrite the rules just like Don Draper did with Lucky Strike Tobacco…distract from the dangers and focus on quality.

I first became aware of Jason through my friend Teresa. I was astounded that two personalities as seemingly different were compatible in the blogosphere. I came to lean deep down they’re similar. They believe. They’re both great bloggers on wordpress, our larger community of thinkers, truthers, writers and pranksters.

No one knows idea knows I’m alive. No ‘likes’ ‘comments’ or replies.

 

Then again, my social media skills are so weak, It’s possible If I got them, I’m not getting notifications.

I’ve subscribed to get notifications of many people’s wordpress posts and get them for a while and then don’t.

I also spend a lot of time ‘providing content’ to be of help to other people on bigger, commercial platforms. They have high standards. It takes time. A lot of my stuff they don’t run with. Sometimes I hit a home run like with the “Three Sizes of Clothes” series, both video and blog.

Therefore, I don’t spend time developing my platform. It’s a choice.

I also, like Jason, don’t niche.

I’m not like “Bipolar Bubble” because for me, as a reader, that stuff in my inbox gets old. I don’t like reading about how people wish to end themselves because it reminds me of stuff I deal with at times, but not now.

I need a break sometimes from bipolargroupthink. It’s a crowded field and no one ever shuts up about it.

I think about writing a book but am working my up the publishing ranks, hoping to attract an agent and or publisher. I need other pairs of eyes and ears, including attorneys.

This year marked the publication of my work in The Miami Herald and The Tribune(now ‘tronc’) outlet in Ft Lauderdale, The South Florida Sun Sentinel. I yearn for a Wash Post Newsletter like “Acts of Faith” but I don’t have anything both faith and election related.

I don’t want to self publish a book. I’ve read a few self published books this year and find them hard to read. I need a new car, not a book.

I’m too new at this, and am sitting on a boatload of scandalous info I haven’t seen anywhere else (shocking corruption, glamour, Hollywood, real life celebrities, throughbred horsetraining, modeling, acting, alternative radio and organized crime…stuff I’ve never written about)…behind the scenes entertainment stuff agents say they are looking for in prospective clients.

But do I really have anything to say?

 

 

Why do I blog? I mean, really????

alblackdressmall

 

I used to be in radio, which is a commercial business that carefully calculates who they are trying to reach, how old they are, race, level of education, income, etc. My format, alternative, was aimed at 18-34 year olds, 60-40 men, mostly and women. At the time, I was in my thirties (I did this from 29-39). I knew as an employee, I’d age out sooner than later. When the ad department sells that Saturday Afternoon live remote from the car dealership, they don’t want to send out a 55 year old woman, I mean, not really.

 

The reason I bring this up in the overall discussion of why I do what I do… is I rarely blog and am even guiltier of not reading and responding to others. I hardly ever go on facebook. Twitter? Can’t be bothered, yet this is the best place to ‘reach out and touch’ someone.

 

Basically, I am looking to collaborate on an intellectual level with writers, bipolar so much the better. I’m in that phase of writing articles for magazines and the local newspapers (Miami Herald, South Florida Sun Sentinel, Bipolar Hope, etc.,) and try to figure out which books to write and which topics to include.

 

I can’t figure out if tardive dyskinesia belongs in a separate book all its’ own. What do you think?

I can’t get anyone to tell me how many of us there are.

The info I’ve dug up is of practical information to those of us who take the drugs that cause them…..those atypical antipsychotics advertised as ‘helpful for depression’ that list warnings for antidepressants so the consumer doesn’t realize they are being prescribed a cousin of Thorazine, a drug that helped a ton of people in the 52’s and emptied mental institutions. Those people could now live their lives on the outside.

The info on movement disorders caused by Reglan and antipsychotics that I can’t seem to dig up is even more interesting.

Many neuros in the field say they’ll answer questions and then blow me off.

I know why this is and want to write about it. It’s not damnning, but it’s practical knowledge we are deprived of.

I lost my grant for tardive medicine this year. It’s changed my perspective. To put it lightly.

I am just looking for feedback. But it seems like a crowded field out here. Especially when you get to the point that you are writing for all these publications demanding copy guaranteed to print….it’s hard to come back and blog, sorta.

Indie Pharmacies an Endangered Species…The only kind who understands and cares

pills

I am on a tear to save independent pharmacies being driven out of business. If you read my stuff, you know I have bipolar/tardive/borderline diabetic side effects. When I got tardive my publix of fifteen years bumped me off. My complications were too much for them. I found an indie which is why I wrote this story. Indies are being driven out of business. Conflict of interest/collusion between pharmacy benefit managers and the drugstores they own and government laws that benefit….well you get the picture.

One click is all I need to support this movement.

http://www.bphope.com/blog/bipolar-strong-my-pharmacist-has-my-back/

 

#OnePatientOneGoodPharmacist

 

Looking for other tardive patients for a movement disorder project…a free online pamphlet filled with facts.

gainesvilletwoWe went to Gainesville to see my neurologist, the one who finally fixed the tardive dyskinesia, a side effect of antipsychotics.

 

I’m going after a huge undertaking, writing a book of my journey with tardive, the docs I saw (you would not believe some of the stories) the ER visits, the 8 mo disastrous titration off Seroquel that only made my symptoms explode (withdrawal emergent syndrome) and the whole lot of it.

How many people have this anyway? Who would know? I am lining up my sources and looking for input. What questions are answerable? Should I ask for a quote?  I’m just trying to do the right thing and prevent others from living the same three year marathon nightmare that I did. If you know anyone who is twitching, grimacing or thrashing, send ’em my way. bipolarbrainiacSFL@Hotmail.com

 

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