Scary Tardive Types on the Internet-Damaged Goods: Do not Wear!

Photo of a photo

 

Beware, Be careful, if you do a search for tardive dyskinesia, there’s a ton of disinformation and misinformation.

I’m writing a centrist book on it…cause, risk factors, studies, promising new treatments,..how to get symptom management w/o wasting your time with self-claimed Tardive Specialists who don’t have a CLUE…I went through a lot and don’t want anyone else to. In fact, if it weren’t for all those doctors who said, “It’s psychosomatic,” or ‘You’ll Never Get Better, Suck it Up’ or…’You shouldn’t take the Valium,you might get hooked” or simply, ‘I have nothing to offer you,’ the book might never have been written.

I learned so much. Our numbers have doubled since I began my research two years ago. It’s still pretty rare though. That doesn’t mean our suffering is any less. you can’t measure misery. Don’t even try.

And as for finding and trying to talk with other patients,…there are some very damaged people. They are angry. Rageful.

Some of them have no symptom relief…their lives are decimated. They want to get even. With the world.

In the following case, I took a few blows to the skull before removing myself from the situation.

There is this one guy who is doing a facebook page based completely on his lawsuit.

He’s suing AstraZeneca (Seroquel), asking for punitive damages of 129 million. And that’s just for him. One person.

He thinks Seroquel is poison.

He’d managed to attract a famous lawyer.

The lawyer bailed.

Now I know why.

This guy called me a “Troll.” I’d never heard that term so I asked him what he meant.

He said he wasn’t feeling well that day. I tried to forget and move on.

Then, he gave me all his personal info, asked me to read every single post on his ‘tardive dyskinesia lawsuit’ facebook page and then write articles on and about him and his lawsuit…I write for three bipolar related publications. He  suggested others like…Reader’s Digest, WEB MD, I mean, I felt we were on the same team!

The next day I message him and He says… “PLZ LVE ME ALNE U NEED INPATNET PSYCH. U R THE TYPE of PERSN WHO NEEDS SEROQUEL” (This from a guy who thinks Seroquel is the devil).

He went on to say I was psychotic.

I do get hypomanic and type really fast. This is daunting to some. I’m working on it. Swear.

It hurt to have someone flip on me like this.

I was stunned, a stone where my stomach used to be. I knew I had to block, unfriend, the whole bit.

Husband says…Hon, it’s just the internet. There’s tons of crazy people out there.

Is it really like that? I swear, because he had tardive, I felt this bond…I’m a little on the lonely side to begin with…and then this.

It’s best that I discovered his true colors before attempting to write an article about him, that’s for sure!

Sometimes bad breaks are for the good.

More words I thought were the opposite of what they mean…

AlLiliPulPinkAllison Biszantz Aka “Strong”

Here are this weeks words.

 

Prosaic…completely unromantic, commonplace. And here I thought it mean profound or prolific.

Canard…an unfounded rumor or story. (I thought it was French for Duck like you have in the restaurants..well done and crispy please)

Rapprochement: re-establishing harmonious or co operative relations…this probably releated to Brexit and EU response. That’s why I’d never seen it.

Lapidary: this is both a noun and adjective. Adjective…an engraver. Noun, something said that’s elegant, concise, deserves to be written in stone.

 

How about this one??? The innocent are haunted and the haunted are innocent?  Where’s my headstone??? Bipolar Disorder a crowded field. If all I end up being is the poster girl for the grisly side effect of Tardive Dyskinesia and related challenges like Stigma, that’s more than enough for me, thanks for reading.

 

 

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.

If you want their number it’s 844-455-8708

Not enough weeks for words of the weak!

Here we go.

diamandagalas

Glossolalic: This was a word in the New York Times article about Diamanda Galas. (pictured above) It means the gift of tongues, which I think I mean speaking in tongues in her music. She’s one of a kind, truly. Using her art for activism. No matter how ugly it got.

And I worked for the only alternative radio station to play her. She made album with John Paul Jones of Led Zepplin and they toured.

Atavistic: reverting to the past or ancestral, like our instincts or fear.

Incipient: Beginning to happen, initial stages of becoming something. A Groundswell.

Unalloyed: Usually referring to metals, gold, silver but in a person it means unreserved.

Parenteral. This has to w/medicine, particularly as I investigate why buprenorphrine is not available and why ..whatever. …what it means is that you take it in a different way than swallowing a pill. This is a good thing and less damaging to the liver and digestive tract, which has to break it down. Unfortunately, these types of administrations are only employed late in the game, after the patient’s liver or kidneys have failed.

Gerrymandering: It’s a political thing, means to push, manipulate the boundaries. They are all doing that, in my opinion. The candidates.

 

New Youtube Channel and uploaded Tardive Dyskinesia Video

 

I have a learning issue. It’s meds, racing thoughts,al in german dress and new earrings adhd and middle age so I have a social media person come over once a week. Some things happened at my magazine, like changing the name of my article and not telling me, which made me feel really sad. I’m just sad today. Anyway, to cheer me up and take back control of my activism and journalism, We created a YouTube Channel and uploaded my tardive dyskinesia videos on there. If you know anyone who has that problem, I learned a lot during my three year

https://www.youtube.com/channel/UCFrrhgSBHa6_4FIw1ydlG7Qarch for treatment.

Listomania Shocker!!!!!!!

Wrap Your Head ‘Round This One, readers and writers !!! We’re being bamboozled and we’re even helping the bamboozlers along!!!

trumpoprahPhoto of a photo

 

Lists are dominating the day. If it’s not a list, you’ll never get printed. This is especially true for young ones. I remember quite well.

Who or what would you most like to see crammed down your throat…Donald Trump, a cheesy mag with a ‘top ten ways to blast belly fat’ or Allison Strong and her Strong opinions. Join her and throw some wrist action (clicks) likes,  nonlikes…we like those the most actually, the link is below.

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

Valentine’s Day and My Wonderful Man Michael

CHURCH DATE

 

Not a huge valentine’s day person but just finished up a piece on being in a relationship with another person w/bipolar disorder and mistakes I would never make again. One relationship was with another person Dually Diagnosed like I am. And he refused psych meds, which I (unbelievably), let slide!!!

 

I wanted to jump from my 12th story balcony but he actually tried to.

 

Then I met Michael. We were all in AA at the time and Michael walked up to Paul and said, “I’m with Allison Now, and we’d appreciate it if you didn’t bother her anymore.” And that night, two years after Paul had tried to jump off my balcony, he overdosed on Xanax and had to go to the hospital again. I’ve been with Michael now for 17 years. I can’t imagine a life without him. I love him so much. He’s my other half, my better half. I don’t know what I would do without him. Here is a photo of us, back when I had money to have my hair cut regularly, and back when I also was struggling with antipsychotic weight gain. I’m skinny now but not any happier than when I had the dough and a doughier body. Michael, this one is for you! I love you forever. Allison Biszantz (aka bipolar brainiac or Allison Strong)

Stigma where it shouldn’t be: My local Nami.

This is a letter to another person who has tardive dyskinesia and is quiet about it. She’s smarter than me. She realizes it scares people. I’m writing her about being stigmatized and discriminated against by my local drop in center and local Nami. This is not the first time I’ve looked at this issue. For all of you people who are trying to advocate, help others, sometimes they don’t want our particular voice to be heard. I took her name out of the letter and am reprinting it and asking you…should I let NAMI national know about this situation or let it lie? I’ve already cried ‘foul’ locally in a very measured, calm manner. The problem is trouble begets trouble. What would it help? Would it result in more doors being shut in my face? My local Nami is Broward County Florida, by the way. This is my way of asking you: What should I do about this?

Allison

Dear M,

 

Buzzfeed published a list of thirty books on mental illness. My book is beginning to just come pouring out of me. I added bipolar hope blog and a one-off on Mindful Management of Mood Disorders-DBT to my list of publishers. When I saw this list, because I had gotten my first list of books from you, naturally I thought of you.

 

I have a thorny situation I thought I would ask your advice. I want to volunteer in mental health in more than just writing. I am doing a type of telephone outreach developing a database for IBPF and since I’m decent on the phone from years of being a disc jockey and know how to talk naturally, (you just talk and mumble and they get it..they don’t feel ‘slicked’ out..you know?) I am enjoying that.

 

 

Here is the situation. I wanted to write a second article about a drop in center that I’d written a first article about. In past, I volunteered for three years with high hospital clearance. I lead a good peer support meeting. I developed an eating disorder meeting, got us in newspaper, showed up until others began tooo..in short the meeting is still running today. I fell off their volunteer rolls. When I asked to be put back on and take the class, I was told I was too unstable. While it’s true I’m verbal, impulsive and sometimes dominant, especialy with people who have thought disorders and are going at a slower speed, I’ve worked on it and have gotten better.

 

AT that drop in center, there are peer volunteers who have offered me drugs in the parking lot. Others make professional appointments to fix the computer for example and don’t show or call to cancel. I even get calls from paranoid volunteers who think the CIA is after them. I don’t do things like this and I don’t report either. But I’ve run into the same problem with NAMI. I attended a few of their ‘connections’ meetings and was scolded for nodding my head and saying ‘uh huh,’ when someone was talking. They solicited volunteers to lead more support groups. I am really good at this. My calls go unanswered. I tried a third time and filled out a telephone application with the head office volunteer and told him about the problem at “Rebel’s Drop In.” He reassured me I’d done the right thing by confiding in him, as the information would have been relayed to him anyway. They vet us thoroughly. I have been told twice they have no one to do the newsletter. This would be so easy for me and I volunteered. My application has been ignored for two weeks. I followed up with a phone call a week ago and left a message about ‘starting slow and small to work towards a common goal.” it was also ignored.  I got an email from them yesterday and cooly responded that I’m aware I’m being discriminated against because “she’s got that.” she’s ‘trouble,’ ‘she’s angry.’

 

So my email just said, “I’m not angry, this happens to me a lot since I got Tardive and that I understand I’m the face of a fearsome statistic even though I’m asymptomatic. I think it’s the tardive. If I had never mentioned it in a “Connections” meeting I would have been warmly welcomed. I have a strong skill set.

 

Sometimes doctors won’t take me as a patient, and the ones willing to explain said it was because they viewed me as ‘trouble,’ ‘a walking lawsuit’ a ‘basketcase on too many drugs.’ My own psychiatrist of  17 years says I’m an ‘exotic’ and that people just don’t understand.

 

I feel good. I had bipolar depression last year from April to Mid july and it was tough. My new antidepressant is hard to keep down, side effect of nausea. But I’m a trouper.  I realize certain things aren’t meant to be. I was hoping to volunteer for the drop in center or Nami by facilitating ‘connections’ or a ‘mat pilates’ class. The nearest DBT class is held there. I don’t feel comfortable or supported there.

 

I wanted involvement with Nami to learn more about things like mental health parity, ballot initiatives, etc. I had wanted to do a series of articles called “Activism Made Easy” giving examples of petitions signable by the click of a mouse. I was hoping to soak up their expertise. I’d be a great grant writer. Maybe I’m meant to write my book and isolate. I crave human interaction, especially with my peers.

 

I’m at a fork in the road. I’m considering contacting Nami’s national branch and explaining the situation. I am continuing to work on my character defects and off putting personality traits. But I hurt deep inside at an organization dedicated to eliminating inequality and stigma stigmatizing me. It really hurts, M.

 

Allison Biszantz

So be clear: I’m being discriminated against and not allowed to contribute there in any way even though I could help fundraise, do the newsletter, start and nurture new “Connections” meetings and more. I’m also considered ‘not stable enough’ to volunteer again at the local drop in center. That is also a deteriorating situation. Question is…how far should I take this?

 

 

“13 Hours” (Bengaze) Pablo and Liev Schreiber. Can u believe these two are brothers?

 

 

 

schreiber as Pornstache on 'orange'                              Schreiber

 

Does anyone remember Ray Donovan or the Newspaper editor in “Spotlight” played by Liev Schrieber? He has a talented brother, Pablo, who played the comic relief role of “Pornstasche” or however the hell you spell upper facial hair. Pictured above. He also plays the outspoken, irreverent and defiant operative in “13 Hours” nicknamed Tonto. He wisecracks, even in the midst of carnage, provide greatly needed comic relief. The film is worth seeing even if you are tired of the the mashed about topic, just to see Pablo’s genius at work.

The Passing of Stone Temple Pilot’s Scott Weiland

Very similar to Nirvana’s late Kurt Cobain, Weiland was dual diagnosis and his lyrics could be unintelligible. Anyone remember that refrain in ‘Plush,’ where he goes,

“And I feel and I feel when the dogs begin to smell her, will she smell alooooonnneee?”

What the hell was that? It was pain and we all felt it. He was not as well known as Kurt but his demise is no less tragic to me, no smaller of a loss. I was rooting for him. I cried like a baby when I heard he was gone because I knew he struggled with legal issues and back and forth drug addiction. I thought that like Robert Downey Junior or even me, he’d be one of the ‘lucky’ ones.

For cryin out loud, Axel Rose is still alive, why not Scott? And now that I mention that, Scott Weiland had several falling outs with his band and one of his best known side projects, “Velvet Revolver” had two former members of Guns and Roses playing with him.

 

We know that cocaine was found near his body and that gossip publication,TMZ, was printing stories of his relapse into crack cocaine and alcohol. My legitimate question is, how would they know that? Were they smoking it with him? What also is known is that cardio problems run in his family, crack couldn’t have helped his health. As an exercise bulimic who used to live on the natural Chinese stimulant, Ma Huang, I incurred heart health issues. Branch Block something or other. I have to wear a Holter monitor every year and then they tell me my abnormality falls within ‘normal.’ What I  do know is that I never had these issues before Ma Huang.

 

I picked up with Ma Huang innocently at a health food store in 2000 when I first was given Seroquel and gained weight so fast I panicked. Looking for a healthy way to suppress my appetite, I never dreamed Xenazine was bad for you until it was banned by the FDA.

All I know is that he’s gone and it makes me feel like my hold on life, mental health, sobriety etc is a tenuous one at best. If a giant tree like him falls in the forest, what does it mean for me?