The USA Legal Show ‘Suits’ is charging for new episodes?

Cord cutters of the world unite!

 

Even though the premise of a false Harvard Law Graduate is weak, we really like the show Suits. The above is a picture of Megan (sp) Markle, who happens to be Prince Harry’s girlfriend/fiance and is stellar in the show. Apparently the British Paparazzi, who can be really vindictive, took issue with Prince Harry having a relationship with someone who is biracial. Unbelievable.

The last time we went to Xfinity to see the most current episode of Suits, it said “purchase” for 1.90. per episode. We are wondering if this is a mistake or if Xfinity is becoming greedy and we should dump it.

Me, Speaking on Tardive in San Diego at American Psychiatric Association

Oh, my god. That’s the side of my face I can’t stand. Not only that, I was carrying 20 lb of what my friend D calls ‘seroquel spiderbelly.’ So I kept it black and basic.

Just the story. Just the facts. And you know what? I cried a little on stage….or tried NOT to cry, but someone has to have compassion for me. And for the rest of us out there. We need a Tardive Dyskinesia national advocacy group.

Guess who is thinking about starting one? I am on disability insurance, can’t earn money, and am tired of seeing my name in print.

So, this cause, as dreary as it is, deserves someone to reassure others they are not alone and they can get better, even if their doctor is telling them to  ‘learn to live with it.’

Everyone always says it would be so much better for us if we had a ‘single payer’ system. But I’m here to tell you, if you have a difficult problem…if you live in a country like England, you could never see a total of 9 neurologists over the course of 5 years. So….I’m grateful for Medicare and Disability, I guess.

I just read another study, this one in Britain, based on 900 studies. They estimate the risk rate….this is called ‘incidence rate’ at 20% in a patient’s first year, and then add 3% more for every year of antipsychotic use. And not all atypical antipsychotics are created equal, either. Some are way more causal than others.

I’m not saying these are bad drugs, but do we all need them?

I believe I could have handled my bipolar disorder without them. Just good mood stabilizers. That’s it. Next Stop?

New Orleans, and my husband is coming with me. And I’m going to speak.

The Time is at Hand for a Agent/ Publishers search.

Writers…this is not a promo or commercial for my book. It’s writer’s musings while writing first draft.

 

All I want is for my story and the ballpark but the consistent consensus of my 10-neurologist ‘brain trust’ on answers to things like ‘What are my chances of getting this?’ to get out there.

I didn’t want to put pressure on myself by going after an agent/publisher before the first or second draft of my book  was written w/bibliography and footnotes.

I didn’t graduate from Stanford and sure didn’t major in English Lit which would have helped. I did, however, take a boatload of journalism classes and still have the notes.

From research I learned Tardive Dyskinesia is not only a side effect of antipsychotics but EVEN antidepressants, ADHD meds, Lithium, Depakote too! All these meds are good, solid meds..I’m not demonizing them. That’s been done to death.

Just like the opiate epidemic, it’s not really about the drugs…..it’s the suppression and lack of knowledge.  Just like the opiate war, it’s not a battle to be won overnight.

This is the first book on this side effect. It is or will become an important general health issue.

Tardive Dyskinesia ‘prevalence’ doubled in the space of three years. 500-700,000. No longer an ‘Orphan’ disease.

I didn’t exactly know the content and flow until I started working on my bibliography., (Which presently is 20 pages long).

What I have now is a halfway done first draft, footnotes and 3/4 done MLA bibliography with another new thing I learned ‘Department of Index’ (DOI) links.

.But the book still feels like ‘All Talk.’ I want it to be ‘for real,’ a deal sealed w/academic or indie press. I truly don’t want to self publish a shoddy book. I’m in over my head. I will if I have to……but gosh….I could just put it on my blog like I’m doing now.

I wish for a paperback to be available so people can hold it in their hands and see they are not alone.

I see the support I need to perfect things like formatting, developmental editing, punctuation and form of my bibliography, (which includes books, websites, dates of retrieval and press releases)… cover design, legal vetting, promotion and distribution….yada yada.

I know I need a partner.  Let other people help me out of their own self interest.  Either a pharmaceutical company pamphlet or a renegade book published by an indie or academic press. Royalties go to a 501C.

There are many people who would like the world to be better educated on the permanent side effect of Tardive Dyskinesia, a  61-year-old syndrome that’s been bullied into the broom closet because it’s scary to think about, affects patient compliance and overall, very bad for the lucrative antipsychotic business.

 

Actually doing the work (writing)

anglemegyn

I’m working on a book that’s before its’ time. Tardive Dyskinesia, (soon to be ACRONYZED as TD) It’s centrist and slightly comic as the subject matter is really heavy stuff.

I want it to be an ebook that can be updated when new resources (charities) or new meds or clinical trials become available.

My first 6 chapters are done but there’s a lot of repetition because of memory issues. The truth is I want to get this over with so I can write my ‘main’ story. Or maybe this should be folded into my main story? I just don’t know what I’ve got until I do the work.

Can you just put something like this on your blog? So people can find it when they need to?

On the farm in Lexington Kentucky (family visit) w/3 sizes of clothes

horse

Even tho I packed really carefully, when I landed I had slacks that fell off my butt and dresses I could not zip up. We are going to a fancy equestrian party tonight and luckily I had a stretchy maxi dress. I have gotten sloppy w/food, not lifted weights as much as I should and right now, sugar and carbs have ahold of me.  My AIC, which I worked on lowering for four months, has risen w/the 12 lb I gained (all in one place). It’s hard not to feel like my life is out of control right now. Alot of our activities while visiting Dad center around food and drink. And on the subject of ‘out of control,’ I forgot to plan for the weather. I brought too many coats and not enough shorts.

But look at this horse. Do you think he likes me any less for any of that? Of course not. He is a horse, of course, of course.

Self Advocacy

tiarawithoutsilver 001Even warrior princesses crash and burn sometimes….

 

Oh, the time it takes! I lost my grant to get through the part D ‘coverage gap’ or also called ‘Donut Hole.’ I have to be on “Straight Medicare” because I see so many specialists and even my primary won’t accept one of the “Medicare Disadvantage Plans.” He says they are necessary (“Straight Medicare) for ‘Survivability’ but then, Dr. Morton can be a tad dark.

But right now, so am I? How am I going to afford my drugs in the spring of next year?

When they talk about Mental Health Reform, they should start with the Donut hole, because if you get someone all fixed up with mood stabilizers or antipsychotics, and then the donut hole hits…they go all the way back to square one. It’s Sisyphean even. Rolling that stone up the hill over and over only to have it roll down again.

There has got to be some rich person out there who would love my tardive dyskinesia book to be published, give me a small grant so I can pursue that. I’m already hunting down sources so I can get metrics. But who is listening to me, anyhow.

Nord, National Organization for Rare Diseases, has blown off four phone calls and four emails.

Why?

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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