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.

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.

7 Superfoods to turn you into a fat burning machine!

outofthewaterGotcha!!!!

There’s no ‘7 Foods, nor would I put a list (listicle) article on my blog! Gotcha!!! If you want a list, click these links about list articles- why I HATE & FEAR their growing dominance.

https://www.facebook.com/bpMagazine/posts/1370951026263754

http://www.bphope.com/blog/bipolar-strong-list-o-mania-shocker/

Before Seroquel I was ten pounds lighter than this. I am an exercise nut. Love it. Swimming is just one of my ‘things.’ Then I was put on Clozaril because it’s super sedating and I have tardive. Between it and the Xenazine Caring Voices Coalition (a charity for rare diseases) helps me get, and a benzo, I’m pretty good but struggle with weight.  In studies, Clozaril is twice as likely to result in weight gain, hunger, hyperinsulinism, metabolic syndrome and finally, type 2 diabetes, even weight independent diabetes.

I’m scared.