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?
This was a hard video to shoot. Did I get the point across? Does the link even work?
I did this video about a comment I’ve gotten my whole life and a new way or two to look at it.
I think I’m fat. No, just kidding.
I definitely need better hair. It did NOT look good up that day. Trainwreck.
The site was “I went to Rancho Santa Fe elementary school” (North San Diego County, just east of Del Mar.
The Admin reminder was ‘we want to be nostalgic, swap stories and keep things light.’
Most of the time, I did exactly that. I told some whoppers about listening to Dr. Demento, throwing oranges at cars and seeing Rocky Horror Show when it opened in London’s “West End,” their “Broadway.” Our teacher was scandalized but we were in the same row all the way across the theatre and there was no way she could get us out of there when Tim Curry started doin’ the can can “I’m a sweet Transvestite From Transylvania….uh huh”
The attention I got as a story teller and a published writer made people angry.
On my final visit (under someone else’s name) I asked,
“So when my book about growing up in the Ranch is released you don’t want to know about it?
Anyway, here’s what got me banned. maybe somebody felt guilty
This relates to all the hysteria about opiates and the lack of attention paid to the treatment of chronic pain. Yes, Deb at CDC, noncancerchronicpainlivesmatter.
Prince may not have died in vain. From reading articles I found he and I had a lot in common. Chronic pain from too much over exertion. Mine is in my back. I am a responsible, steady, minimalist user and have reduced my dose by 2/3 as well as frequency. But the side effects are terrible and have finally caught up to me. How does this relate to Prince? Well, there is a guy who has stuck his neck out on the line, a maverick in the treatment of chronic pain using Suboxone and or Buprenorphine. Less side effects, no intoxication like the quick acting Vicodin, Tylenol 3 and 4, and Percocet and those lovable blues, the oxys. Those get ya high. Hook you in. I know first hand because I got off of them. Prince’s people had contacted Howard Feldman, whose treatment center is outpatient “Recovery Without Walls” For anyone who has been in 12 step groups, the ‘abstinence only’ idea is great in theory but what do you do for the pain once you get off the pills? According to the literature and the studies and conclusions of his, there have been outside pressures restricting the use of this drug. A doc has to be licensed and can only prescribe it for 100 people. I found out yesterday that my hoity toity upscale pain clinic doesn’t have a license for it and my questions about a healthier non opiate alternative were met with skeptical frowns. Dr. Kornfeld’s son, Andrew, flew out to Paisley Park with an initial dose of Buprenorphine in his pocket to show Prince that he wouldn’t be dealing with terrible pain but Prince had one last go before the life saving mission was able to save him from himself. Basically guys, Buprenorphine is Methadone light, saves lives…by 75%, reduces disease transmission and if it had been more widely available instead of an insider’s secret he might still be alive today.
What do I do? In my next post, I’m going to show you the letter I am writing to the good doctor to try to find someone here in South Florida. It’s intimate and has awful details but maybe someone will relate to it.
People affected with tardive dyskinesia don’t circulate socially much. They’re often disfigured by the involuntary spasms, movements or in Dystonic cases, they are frozen in a contorted way.
I fought hard for three years to find relief for my symptoms so I could sign my own name, sleep at night and drive a car again. I went to so many doctors you would not believe it!!!!!!!!!!!!!!!!! I’m wanting to write a short book on it because I learned a lot about treatment, how to get it and what to look for. A lot of the info is in vlog 1 and 2 and I’m just asking people to reblog them in hopes of reaching more people. The 300 folks I’ve reached on IBPF’s site so far had told me some incredible, hard to believe freaky stuff. My vlogs are NOT alarmist or antimedicine…they are just helpful and low key. I did two sets, one of the sets was later in the afternoon after waking up and I was more animated. Here they are. Maybe they’ll brighten up someone’s day.
Tardive Vlogs Utube
Part 1: https://www.youtube.com/watch?v=nCOR_YVo-ks
Part 2: https://www.youtube.com/watch?v=TqfEX8jl-Zs
Bipolar? Mental Health? Here are the links to Consumer-Run Drop In centers featuring “Mindfulness,” Schizophrenics Anonymous” “Nami,“ Bipolar Support, Jewelry, Free Peer Counseling etc.
Nami has a link and NEC has a link.
Here’s Nami’s and they have a big disclaimer..basically saying that there may be more Drop in Centers by now.
http://www.cdsdirectory.org/database/view all listings php
Here’s NEC’s directory of Peer Run hangout places that are ART centered
I’m trying, goddamit!
I started blogging with Tumblr. I got hundreds of follows right off the bat. Many in the eating disorder community. Then I switched to WordPress without knowing anything. Somehow this led to me researching and writing a story on something I used to be cynical about (who, me, cynical? No, tell me it’s not true! hahah) The DBT class is held at the outpatient facility of the public hospital in this area. It’s called “Rebel’s Drop In” and is part of the reason why my blog has that theme.
Anyway, there is a long running personality problem with the gal that runs it. I wrote a flattering article about her place and she said stuff that I wrote down. My deadline loomed and when she was on vacation I emailed her two versions. She used her Mindfulness as a weapon and attacked me for bombarding her with emails. Hurt, I stopped asking her for information or offering her final editoral approval. (Sean Penn had given Chapo final editorial approval and apparently it’s a no no) Anyway after she attacked me for sending multiple versions to her for her approval I just backed off. I took her name out of the story as well as the center, the donor’s name and the hospital system if’s affiliated with. When I saw her later she said she was really unhappy with the whole experience and it was the most bizarre that she’d ever had. She still won’t speak to me and she’s the project director as well as one of the DBT therapists.
The only thing between me and DBT is money and this woman.
I want to take it. Does anyone know what the copay?
I did a research story on it for NewLifeOutlook Bipolar read the original book CBT by Linehan and think it could help me with certain faulty thoughts and fear/guilt driven behavior that results in misplaced priorities, loads of stress, Etc.