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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Heres start of A Medicare Report of Abuse .. Stigma, both racial, socioeconomic and bipolar

ali

 

Hey you guys…I just wrote this up. A formal complaint of long term abuse I endured by Quest laboratories over a seven year period because I was ashamed, cowed and didn’t think I deserved better. They almost succeeded in denying me my critical lab services to get my most important mood stabilizer. They are NOT going to get away with it. I may be one of the ‘little’ people but I’m “mad as hell and not going to take Stigma any more.”

Local Lab Chain’s Long Term Abuse, shame shame shame on YOU@!

 

 

To: Medicare’s Beneficiaries and Family Centers Care and Quality Improvement Center for quality Improvement Organization.

Re: Systemic and local problem in my seven years as a monthly client of Quest Labs, 3343 Sheridan Street Location, Hollywood, Florida. 33021-3606. (the last four digits of zip were hard to read).

This long letter, I’m sorry but there’s a lot to cover, chronicles a litany of abusive treatment, jeapordy of my health, healthcare and access to a most critical medication by one of your providers.

It’s a case of stigma, and if you get to page 8 you’ll see the ‘diversity in reverse’ racial discriminatory aspect as well. I don’t come out and say who’s what color but I do remember distinctly a conversation I had with the supervisor whose name is Augusta.  You’ll be able to see this sad scenario in full blown Technicolor. But there are other types of stigma, abuse, and discrimination as well. A systemic aspect infecting all aspects of the corporation. It can’t continue. You must be informed of this so it doesn’t happen to anyone else.

(I will be sending this to better business bureau, chamber of commerce and any other regulatory agencies I can find too. ‘

Do you want to hear the rest of it?  Let me know.