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.

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.

Writing a Book, technically speaking..what does it take?

allicat

 

It just occurred to me that my greatest resource is right here on WP. I had an experience (well, actually I’ve had many) that I need to write about so that it doesn’t happen to other people who are on the medication that causes it. According to NAMI, 30-50% of people on ANY type of antipsychotic, be it first or second generation, if they take it for over a decade, they have a 30-50% chance of getting a permanent neurological disorder that’s called “Tardive Dyskinesia.” Nice. I know. It happened. And I was the ‘hot potato’ that no one wanted to help…or have anywhere near.

 

The whole damned thing is not attractive but I learned a ton of stuff in the three years I searched the world for symptom control.

There’s a hell of a lot more things you can do to lower your odds than to simply not take the medicine. But that’s why I want to write the book. I made a couple videos for IBPF (international bipolar disorder foundation) and they need a wider audience. People who are concerned or worried or who have the problem will find me, believe me. I just need to get the book out there. I’m fine with self publishing. I’m fine with offering a free downloadable product too but don’t know if I can afford to do it that way. I just read today that a badly ‘formatted’ book hurts sales. I don’t even know about what this ‘formattting’ stuff is. Who does? Are there people out there who (unlike Authorhouse and other self publishing firms) can guide you through Amazon “Create Space?” If there are, please, let yourselves be known. Once I get the first one done, I have many more books in me. I finally broke down and told my husband I need him on ‘my team,’ as he’s really technologically intelligent.

Recently I visited the Youtube channel where my videos is and saw it had gotten 300 views. Of the twenty comments, 80% of them had been on the same atypical antipsychotic as I had been. There’s something there, believe me.

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?

 

 

It’s no joke..jewelry making as Art Therapy for Bipolar Disorder

blueheart

 

Obviously there’s an artistic side to me. From my youthful participation in musical productions, plays, risky choice of dropping out of Stanford to pursue acting after doing a commercial and getting my Screen Actor’s Guild Union Card (something half the actors in LA do not and will never have), to my writing, being artful in my disc jockey work, affinity for all kinds of music, (was a musician myself at one time)…but it took me a while to realize how art therapy can do the trick.

My Mom has an MFA from Pomona College outside of LA. She’s an art therapist. One time, when I was in deep trouble, living in LA and addicted to drugs and the man who provided them and the new cars I received just as quickly as I totaled them she did a guided ‘trip’ through what’s called “Sand Tray Therapy). Sand tray allows the patient, or clients, to create their ideal world through trinkets, placement of bridges, roads, dolls, rocks, to symbolize what they would like in their life.

I can’t remember the exact details but my Mom remembers I created a ‘way out’ of the trap I was in and my imminent departure from Los Angeles by use of this treatment modality. I’m not sure why ‘Sand Tray’ never caught on big time but it was useful to me. it made me realize I had it in me to make the move I needed most. To leave that man, my fiancée of 8 years, and leave LA once and for all.

Later in life I married a Geffen Records promo guy and he was transferred to LA, so I went back there, after all. It was much easier to secure voiceover work and commercials when I wasn’t on cocaine, let me tell you. But that’s a whole nother story.

I’m asking your opinion if you have time could you answer?

vera1999AllisonBlackandWhite

cropped-jamesclearer.jpgf

Should I change my photo rom the current photo on the left, switching to the one up above on the left or up above on the right, leaning into my hand?

Which is better for my blog, “Bipolar Strength: Rebel With A Cause?”

I’m still a rebel but I stand FOR things, not against them. My friend has helped me see this, so I’m modifying my blog to reflect it.

My name is Allison Strong. I used to be an outspoken, highly rated female (obviously), alternative disc jockey, a continuation of a music scene that defied the status quo, sometimes to good effect.

It was an era when we could talk about depression. I even had a regular guest named “the cemetery guy” and people absolutely loved him!

My boss wasn’t sure about it but when he saw my ratings spike, it decimated every preconceived notion he had about what made ‘good radio.’ People were ok with the dark side. The ratings bore that out.

 

People won’t admit it but want a good image. That’s why I went with something professional, obviously contrived. But it was a mockup of the late movie star James Dean, and his titular film “Rebel Without A Cause.” That’s why I went with the wifebeater T shirt one.

I want to show rebellion and questioning the status quo, doing things like researching medicines and their side effects before taking them, instead of doing what I did, blindly loading up on high doses of certain meds that had permanent neurological side effects.

 

It is what it is. I’m not angry about it anymore but want to ‘clue in’ the next generation of people getting an automatic bipolar disorder diagnosis and given a set of meds to take without question. It might not be so easy to get off them as it was to go on.

You can actually go online and google a med and the one in its’ class with the most class action lawsuits for a particular side effect, well you can add 2+2 or you wouldn’t be reading this right now. If I’d only have known.

So what do you think? Stay with Wifebeater and the darkness or pick the LOLOL laugh my head off shot or another professional smiley commercial headshot?

What is best? I’m having a hard time giving up the James Dean image. It’s a tough call. But I am modifying my name.

Allison

aka bipolarbrainiac

 

I’m asking your opinion if you have time could you answer?

vera1999AllisonBlackandWhite

cropped-jamesclearer.jpgf

Should I change my photo rom the current photo on the left, switching to the one up above on the left or up above on the right, leaning into my hand?

Which is better for my blog, “Bipolar Strength: Rebel With A Cause?”

I’m still a rebel but I stand FOR things, not against them. My friend has helped me see this, so I’m modifying my blog to reflect it.

My name is Allison Strong. I used to be an outspoken, highly rated female (obviously), alternative disc jockey, a continuation of a music scene that defied the status quo, sometimes to good effect.

It was an era when we could talk about depression. I even had a regular guest named “the cemetery guy” and people absolutely loved him!

My boss wasn’t sure about it but when he saw my ratings spike, it decimated every preconceived notion he had about what made ‘good radio.’ People were ok with the dark side. The ratings bore that out.

 

People won’t admit it but want a good image. That’s why I went with something professional, obviously contrived. But it was a mockup of the late movie star James Dean, and his titular film “Rebel Without A Cause.” That’s why I went with the wifebeater T shirt one.

I want to show rebellion and questioning the status quo, doing things like researching medicines and their side effects before taking them, instead of doing what I did, blindly loading up on high doses of certain meds that had permanent neurological side effects.

 

It is what it is. I’m not angry about it anymore but want to ‘clue in’ the next generation of people getting an automatic bipolar disorder diagnosis and given a set of meds to take without question. It might not be so easy to get off them as it was to go on.

You can actually go online and google a med and the one in its’ class with the most class action lawsuits for a particular side effect, well you can add 2+2 or you wouldn’t be reading this right now. If I’d only have known.

So what do you think? Stay with Wifebeater and the darkness or pick the LOLOL laugh my head off shot or another professional smiley commercial headshot?

What is best? I’m having a hard time giving up the James Dean image. It’s a tough call. But I am modifying my name.

Allison

aka bipolarbrainiac