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.

Rock & Roll, Hollywood Example of Dialectical, David Geffen of Geffen records and SKG fame

These are shots of David Geffen in the 70’s. Another college dropout like me who did not start a tech startup. Ok then!

David Geffen was and still is so Dialectical. Both are true. He was in love with Cher…until he fell in love with a man. and he’s ok with that. So it everyone else. He’s rich but knows how to appeal to the masses. He’s selling off all his properties as if it’s the last day on earth. He goes up to that Summit in Sun Valley Idaho (where I got my start in radio)…on his jet but wears the most casual clothes amidst moguls like Murdoch and Sons.

I know alot about his career in music because I used to be married to a Geffen Records promo guy. His ‘Asylum’ label was sold to Warner..with acts like The Eagles, Linda Ronstadt, Joni Mitchell…he understood folk poetry and that trend of Southern Rock exemplified by Lynyrd Skynyrd and America. Then he starts Geffen Records, signs Aerosmith, who were addled up and thought of as ‘Over the Hill’ and ‘Over,’ but they weren’t.

 

So that he didn’t look mainstream, he founded a boutique ‘imprint’..This is just like the big publishing houses do….to look like they have indie cred or are somehow on the fringes.

The Imprint was called DGC, for David Geffen Company. The signed a young act from Seattle Indie label Subpop Records called Nirvana, got uberproducer Butch Vig (Smashing Pumpkins) to produce it and the rest, as they say, was history. He sold Geffen and DGC to Universal Entertainment.

Just like publishing….there are only a few major players and they hold all the cards…only under different names.

“Hey, Wait I Got a New Complaint” (Nirvana, Heart-Shaped Box) if you have health care complaints

Kurt

If someone treats you badly at a health care providers office, do you have recourse? Can you complain to Medicare or your insurance company? Medicare will send you to a division called “Quality Insurance,” but they are not regulatory.

The only thing they can do is request your medical records, which will do nothing, especially if you have a beef with someone other than the doctor.  Even if it is the doctor you’re unhappy with, he can always change your medical records to reflect stellar standard of care. Hahaha.

Not everyone at Quality Insurance will tell you this, however. I just happened to have a complaint against a big lab firm (Their name rhymes with ‘Best’ and I call ‘Worst’ who lost my blood twice and were really rude to me for three years. I thought all labs were the same. Boy was I wrong. Anyway, I followed up on my laboratory complaint as I leave in formerly called “ZikaZone” at the time and it seemed a safety issue.

I found out nothing was done, nothing was even annotated!

As it turns out, if you need to make a complaint, your only recourse is to call the state department of health, and depending on whatever state you’re in, it might have a different name.

Google “Regulatory Body for ____________” whatever specialty it is, or if it’s a pharmacy, “State Pharmacy Board.”

Isn’t that a trip?

Allison