I’m willing to be disliked for telling the truth..Allison Strong

NAMI (National Alliance of Mental Illness) published me 2day on local mental health discrim and stigma at my drop in center. http://bit.ly/1P3gyAI

NAMI (National Alliance of Mental Illness) published me 2day on local mental health discrim and stigma at my drop- in center.

http://bit.ly/1P3gyAI

The reason I choose the Anne Boleyn shot is because I stick my neck out and it gets chopped off.

Proud to Blog for NAMI and IBPF and almost for Bipolar Hope

I’ve been lucky in that somehow I’ve been picked up as a blogger by International Bipolar Disorder and NAMI but truly for every four submissions I send out to other digital publications, only one gets picked up. I got really close to being picked up by Bipolar Magazine’s digital arm, “Bipolar Hope.” They take a lot of drug company money in terms of advertising and I challenged them by sending a Tardive Dyskinesia story. If I had really wanted the twice monthly opportunity, I should have sent them a glossier blog on a ‘shiny happy people’ (REM song) topic. See, IBPF has the distinction of being totally independent financially from the drug companies, so we bloggers can be a bit more truthful, blunt, even, if the subject is so. But we balance it out by emphasizing that it does get better.

The rest of my submissions are rejected for one reason or another. There was Stigma fighters, I guess that evaluating my 25 year struggle on paper I told too many stories and talked about meds too much. When you develop Tardive Dyskinesia, Sexual Side Effects, Terrible Constipation, Constant hunger and Metabolic syndrome (half-way to diabetes thru no fault of my own…I eat good am very active and slender) it’s pretty hard to ignore the challenges and victories over those problems like they don’t exist,

I mean think about this: How many of us have gained or watched a loved one weight and not be able to lose it after being put on psych meds? There are advances in Western Science and Alternative solutions too, and I want to write about my journey. After all, I’m still alive and pretty happy.

Then there was the ‘seeds of hope’ submission and they objected to too much personal narrative and not enough of a “we can conquer thru ideology” presentation. So I’ve realized that in all this advocacy, I have to nurture myself, focus on what’s really important and develop a thick skin. And to stick to my own platforms, like this blog and the book I am writing. Does anyone else out there ‘feel’ me?

Good intentions clobber Mental Health Writer and Volunteer.

I’ve hit a snag with mental health advocacy. I volunteered for years at the nearby drop in. I had high security clearance and brought meetings into the psych ward. I developed an eating disorder meeting for them. I got sick with depression and a three year struggle with trying to get Tardive Dyskinesia under control…with both conditions I couldn’t volunteer for about a year  and I fell off the volunteer rolls. Well again, well, well enough, I offered to bring a gentle Pilates Mat class and even get certified in group activity safety measures for them and for me. Well, as you can imagine, since the whole ‘story’ I tried to nicely write about them went south, they no longer think I’m ‘well’ enough to be a volunteer.

Despite this, I still tried to write a nice story about them and their services for International Bipolar Disorder. I interviewed the project director and took good notes. I gave her final editorial approval since I did want to quote her and wanted to improve our relationship. I guess I sent too many emails because as my deadline came and went, she was on vacation and I did not know. When she returned, I got a nasty email full of hypocritical ‘mindfulness’  telling me that her ‘intention’ is to show me kindness but I make it impossible by ‘bombarding’ her with emails. My deadline for the story had come and gone and I wanted to finish it. She works with the mentally ill so why should she expect so much out of me? Am I being discriminated against because I’m too high functioning? Let’s face it, I’m verbal, I’m not all doped up and docile and I ask questions. I try to express myself and spread the good news about treatment options, present and in the pipeline. And you would not believe how much is in the pipeline!!! Ketamine is a comin’!

Advocacy action from my friend Tessa

Tessa Shows us that we can make a difference!

Anyone wanting to help with BP awareness send an email to bravelybipolar@gmail.com and ask for the template to write a letter about yourself and once she has enough she will take them to Wash DC and talk to congress. That is the plan anyhow. Already wrote my letter and sent it to her by PDF. She says it is perfect. This is a way to help without going to congress yourself. She will take all the letters and do the talking.

No longer a One TRick Pony for my volunteer work at International Bipolar Foundation

As I’ve written before, when trying to advocate, raising your hand to volunteer, etc, you may encounter rejection. Maybe it’s me, maybe I come on too strong. But one organization, International Bipolar Foundation, reached online at ibpf.org seems like a perfect fit. Right now I am compiling a list, a database if you will of drop in centers, advocacy groups, MHA offices and anyplace who provides services to people diagnosed with bipolar disorder. It’s interesting work and when you actually get someone on the line, they are usually nice and passionate about what they do. My volunteer coordinator and blog editor gave me this assignment and wanted ten names. When I told her that there were about 400 of these centers nationwide, she was flummoxed. See, they write this book, “Healthy Living with Bipolar Disorder,” update it annually and it’s written by a panel of experts from holistic to the most Western of Medicine.

I especially like the non moralistic approach to substance use, abuse and dependency. It lays out the facts, the ratios of risk/benefit and the possible consequence of huge financial costs, should you destabilize and end up back in the psych ward. That can be disrupting in many ways, especially if your meds are completely rewritten, if you are working and miss work or are just demoralized by going to the hospital.

I haven’t been in 15 years but I’ve come close. Because I have Tardive Dyskinesia, and many psychiatrists and neurologists don’t have up to date movement disorder info (and there is quite a bit) They would not know the best way to treat me. If they loaded me up with a bunch of Zyprexa, Abilify, Invega or Seroquel, not to mention Geodon, I’d immediately start thrashing. But in my experience, psychiatrists in hospitals are in a hurry and often don’t believe the new admit. Try telling a psychiatrist that an accidental careless overdose of Tegretol was not a suicide attempt. Do you think they’d believe you? It happened to me when My doctor put me on 200 mg instead of 100 mg. I forgot to look closely at the label.

Anyway, I am doing work for IBPF besides blogging and it makes me feel really good. My goal, the one I wish to reach, is to make decent videos with light soundtracking for tempo and to be able to insert a logo or make other edits. We downloaded movie maker. I would like to find a local teacher. I sure am enjoying talking to all these mental health advocacy people around the country. The trend seems to be for the patient to become educated and make their own choices, whether to take meds or not, whether they can still drink, stuff about sleep, side effects, an entire section dedicated to bipolar disorder in children and how to treat a bipolar patient who has ADHD and or other co occurring disorders.

Allison

Mental Health Advocacy: Don’t forget yourself!

I’ve hit a snag with mental health advocacy. I volunteered for years at the nearby drop in. I had high security clearance and brought meetings into the psych ward. I developed an eating disorder meeting. I got sick with depression and a three year struggle with trying to get Tardive Dyskinesia under control and fell off the volunteer rolls. They no longer think I’m ‘well’ enough to be a volunteer. Despite this, I tried to write a nice story about them and their services for International Bipolar Disorder. I interviewed the project director and took good notes. I gave her final editorial approval since I did want to quote her and wanted to improve our relationship. I guess I sent too many emails because when she returned from a vacation that I didn’t know about, I got a nasty one in my inbox telling me to stop ‘bombarding’ her with emails. My deadline for the story had come and gone, and I was just being compulsive in trying to accomplish and be done with a task. She works with the mentally ill so why should she expect so much out of me?

I’ve been lucky in that somehow I’ve been picked up as a blogger by International Bipolar Disorder but truly for every four submissions I send out, only one gets picked up. The rest are rejected for one reason or another. Their was Stigma fighters, I guess that evaluating my 25 year struggle on paper I told too many stories and talked about meds too much. When you develop Tardive Dyskinesia, it’s pretty hard not to., Then there was the seeds of hope and they objected to too much personal narrative and not enough of a “we” presentation. So I’ve realized that in all this advocacy, I have to nurture myself, focus on what’s really important and develop a thick skin. And to stick to my own platforms, like this blog and the book I am writing. Does anyone else out there ‘feel’ me?

Rejection Dejection Nothing Personal..It’s about the money!

Normally I am pretty upbeat. But right now I’m having emotional problems. It has to do with these organizations or foundations like NAMI or my local drop in center, Rebel’s. It has to do with them soliciting volunteers or other pieces of content, and then when I raise my hand or offer up what they said they wanted (meeting facilitators, clever little sayings, graphics and this latest debacle with the video I submitted for Healthline’s “You’ve got this Campaign’ that I mentioned yesterday….)

I asked the editor of the magazine why my video wasn’t displayed, acknowledged, critiqued or anything. When she gave me a few excuses that don’t really hold water- could have easily been edited out, cause they were at the very beginning and end..and they never said ‘don’t do this’ or that…I asked her, “How many videos were submitted, anyway?” She wisely never got back to me. Because they probably got thousands of people putting their life on a video, uploading it in hopes of being heard…and nothing. No ‘thanks,’ or anything.

A flash from the past…I’m feeling guilty. I’ve done this to people too!  When I was a music director at alternative stations and a disc jockey. We’d have these contests to win a trip to New York or Europe to see, oh, U2 or The Cranberries or something. The whole idea was to give the listener a little thrill, a reason to listen more, to enter the contest at some location like a car dealership (what a car dealership has to do with The Cranberries or The Offspring is beyond me) but the bottom line is this: only one person can win. The rest of the people get their hopes up, register multiple times under different names of relatives or whatever people listen more, our ratings maybe would go up if we had a really good prize, but the point is, it’s about business. It’s not about people, feelings, validation or even hopes and dreams. It’s about the dollars we got from the car dealership and the free trip we got for the international flight and the front row tickets given freely to us by a record promoter in exchange for playing a unknown ‘starter’ type band to get them off the ground.

So really, The “You’ve got This” campaign for bipolar disorder (and they have those same campaigns for HIV and MS, and other illnesses too so it must be adding dollars to their coffers) it had all the hallmarks about helping US with bipolar disorder get our stories heard, and feel better about ourselves for sharing our experience with someone newly diagnosed.   It wouldn’t have cost them a thing to list/link all the videos that were submitted, (except the ones they had issues with) unless you consider that the internet has become real estate.

In the space where they could have listed everyone who made a personal effort to be real, they can sell advertising for “Are you having problems with Bipolar Depression? Read about a new treatment option…bla bla bla”

My best friend is a writer. I had told her how excited I was about this and she said, “Allison Don’t be in such a hurry to sell your soul.” And you know what? She’s right. All that ‘feel good’ stuff…many of those meetings they hold for us? It’s about commerce, not about actual care. As always, the bottom line is where it’s at and instead of paying someone to call those of us whose videos they did not accept, those same people could be creating content to grab eyeballs so they can sell the real estate. Now I know what she is talking about.

Sure, I’m going to crop out the stuff they said were the reasons I wasn’t accepted, one editor said she “Loved” my video.  It had edits, a little music (Elastica “Connection) and showed in two minutes what other people took six minutes to tell. We live in a short attention span culture. A picture tells 1000 words.

Then again, if the video itself actually is good, captivating and fun to watch, the viewers won’t drift over to the ads for the new psych meds. It’s always  about the money. That’s what I have to keep in mind as a mental health advocate. These octopus I tangle with are in it for different reasons that what they say. After all, they need to get paid at the end of the day and the money has to come from somewhere, right?

Ah,  We’ll see. We’ll see if they were telling me the truth about why it was rejected. If you are curious about this project, Google “You’ve Got This” Healthline Bipolar. The magazine’s site should come up first but also, since I have posted the video on my blog, there is a separate result for my entry under ‘Allison Strong’. That was the name I used as a music journalist and disc jockey.

But I’ve carried on so, I highly doubt they will put it up on their site. They only display 12 and haven’t rotated them much. I’ve watched them all. Sort of sad,consoling long video selfies. That is apparently what they wanted. To upload it again will probably be just more rejection, dejection.