Don’s Book, “Blood Orange” just arrived!!!!

blood orange

I finally bought a book off of Opinionated Man’s “A Good Book Is Hard to Find” and have my eye on another by the same author. It just came in the mail. Yeahhhh

I’m intimidated by the technical process of self publishing. Formatting. How much that costs. That kind of stuff.

I didn’t realize this but Don Massenzio also wrote a book on self publishing!  That’s the one I’m going to buy next.

The book is in my head like it happened yesterday. Magazines and organizations who get money from big pharma, not that I’m against the drug companies, they are uncomfortable with topic of side effect of tardive dyskinesia, also called ‘movement disorder.’  I don’t blame them. It’s a hideous topic and keeps many from seeking necessary treatment.

I know I have to stand on my own with this one. There’s only one bipolar disorder foundation who might be willing to promote a book like this. It doesn’t matter. I have to write it. The people will find me.

State by State Links for Free Mental Health Drop In Centers at bottom.

aljewelingtable(I learned Jewelry making at my Drop-In Center)…they have dbt too. free.

Drop-In Peer Centers for Behavioral Health: An Exploding Trend

Allison Strong

One of the reasons I am glad that I moved to Florida is that it led me to a peer run drop in center near my house called Rebel’s Drop In. In my small county, Broward, between Palm Beach and Miami-Dade, we have 5 of these centers. Peer run drop in centers average 5 per state, see the links below to find one near you.

Mindfulness, OA, NAMI Connection Peer-to-Peer, and a 14-year running Schizophrenics Anonymous meeting are there.  I learned to make jewelry and took new and improved pieces to Etsy, Holiday Gifts and my own wardrobe.  They have Peer Mentoring there, free of charge, to help you reach goals you may have forgotten about in crisis or not.  I have a Peer Mentor, who is someone who has been in my shoes, psychiatrically, and we get together to go over my goals on a variety of fronts. One of the most challenging for me is to ‘widen my social circle.” I’m making progress.

Does it sound too good to be true? No, it’s not and it’s an exploding, well-researched trend. So who picks up the tab?  The programs are subsidized by grants from the state, who always want a list of printed names and signatures, times and dates, so when you go there, make sure you sign the list. Every signature helps them get grants so they can expand and maintain their offerings.

These places are usually in a building owned by a local hospital for outpatient or continuing behavioral care in different tracks called IOP (Intense Outpatient Treatment paid for by insurance and Medicare/Medicaid). Then, after the patients leave, the aroma of coffee fills the air, the colored crayons come out, and food from Memorial regional Hospital arrives to feed those who have little or no sustenance in the grand room.  I’ve eaten it often and it’s always balanced.

In addition to the grand room, where painting, crafts, socializing, and jewelry is done, there are perhaps six private rooms holding various self-help/support meetings until 7:30PM. (Bipolar Support, Emotions Anonymous, Depression Support, Life Skills are just a few). On the weekends, since there is no IOP in session, the hours of the center are bit different.  In the words of Deanne O’Brien, who overcame her own mental health nightmare, (which is one prerequisite for Peer Mentors and Supervisors) “No one is too sick to attend Rebel’s Drop In.” I really believe that.

I’m on Twitter and Facebook and Tumblr communicating with people with mental illness. Many have never heard of these drop in centers.  My friends and I go once or twice a week, drink coffee, bring donuts and gossip. We never know when we’ll be in-patient next, and it’s good to see all the faces of our illness. We are so grateful that the late Ann Rebel’s family gave a charitable endowment to Memorial Regional Hospital, for the purpose of continuing mental health care, Peer Mentoring, and WRAP planning (Wellness Recovery, Action Plan).

If you are curious to see if any of these sorts of arts-oriented facilities exist in your city, county or in a town near you, try these links:

 

Topic:

Art

Bipolar Disorder

Consumer

Jo Menary|Tue, 2015-02-24 21:26

Allison, I am so proud of you. What great information and encouragement you are sharing. Keep is going! Jo

  • reply
  • michael |Sun, 2015-03-29 06:43

Great Job Allison. I am so proud of you not only for your informational writing but also fro you willingness to help others find the support they may need to help them in their lives as they deal with the same illnesses you suffer from! Love Michael, your Husband!

  • reply
  • Maggie|Sun, 2015-03-29 07:05

Looks like you dug around to get all this info. Thanks for making it available for us.

  • reply
  • jennifer blake|Mon, 2015-03-30 08:44

I love rebels! discovered it when I got out of mental hosp….wish they had one in boston where my son lives…this place saved me from myself many thanx Alison for great info!

Words of the week

trump

 

What I love about words is how often I am wrong about what they mean. Usually they are in the context of something that makes them make sense but today I found myself wrong about a few. I run into words a lot because I read a lot. Newspapers and Magazines Mostly.

Here we go

“Putative”: (this was in an article about excessive incarceration in the U.S. I thought it meant punitive..) “Generally Considered To Be.”

“Voluble” (in an article about Trump)….”Speaking Incessantly”

“Apotheosis” (I can’t remember..probably New York Times) “The highest point or culmination of

something.”

“Plebescites” (I keep seeing this in the context of Brexit (the exit of Britain) from the European Union) it means “A direct Vote to Decide”

 

How is this relevant to anything? For one, many of us are writers and love words. For second, many of the people who ‘follow’ me have depression or bipolar and studies prove learning new shit helps mood function. How? I don’t know but I am going to find out.

More Scary South Florida residents….jellyfish of many types

 

sailorjellyfish

There is a link to the companion written Blog as well. And let's not forget to thank Caring Voices Coalition who makes my life possible.

There are lots of sea creatures we share the ocean with. We assume it’s ours but it’s not. We had a huge rash of a nonstinging type of jellyfish wash into shore this week. Everyone got out of the water and freaked out as the purple carcasses littered the beach. They are harmless but spectacular to look at, called “Sailor Jellyfish” for the said on the top of their backs sticking up in the air. We have these other nonstingers called “moon Jellyfish” and they are just a round disc the side of the top of a 16 oz can of tomatoe sauce or something. But we also have purple Man O War show up and all the red ‘danger’ flags go up at Lifeguard stations as these guys have these long, trailing tentacles that have the sting. The sting is not fatal but hurts so badly people wish it was.

Then they get a short time capsule sense of how it feels to have anxiety, depression, bipolar disorder or schizoaffective or schizophrenia or have a horrible degenerative illness like Parkinson’s, Alzheimer’s, organ failure, Lupus or chronic pain that makes life a hell on earth.  We already know about that.

#Noncancerchronicpainlivesmatter

Days b4 my next refill of Tardive Meds, Silverscript is denying coverage

As many of you know, I have a neurological side effect from the antipsychotics that I’ve been taking all these sixteen years. It’s like severe Parkinson’s.

I take meds for it. Expensive meds.

Silverscript, my medicare part D, has suddenly cut me off, just days before my next refill. Previously, back in January they said I was covered until next Feb in 2017. Legally, you guys, can they do this?

 

The Nami statistics are thus: For those of us who take an antipsychotic, whether it’s a traditional old school Haldol or Thorazine or an ‘atypical’ like Invega, Geodon or Abilify,  for a decade, they say that percentage of us who will get tardive dyskinesia is 30-60%. And that type of drug is not taken temporarily. Its a drug they give you and tell you you’ll be needing it for the rest of your life. So we’ll all be taking these meds for a decade unless we try to go without them, find out that we can, and get off of them. For me, it’s too late.

It’s also referred to as Parkinsonianism. There is no cure, only expensive symptom management.

I’m on a critical medication for this.  My Part D, Silverscript, who is owned by the wonderful folks at CVS  (wouldn’t that be a monopoly a pharmacy chain owning part D Medicare benefits?) who had approved me thru Feb of next year. Sent me a notice, …..ten days before my next refill that they are cutting me off. I have no time to react.

We have a piece of paper saying that I’m covered through Feb of next year, so how can they cut me off at the last minute? Ideas anyone?  Has anyone done an individual appeal process? The doctor says on their end, they are out of options, have appealed this decision twice. Now I hear about it.

Will they still give me my meds while we are appealing this? Is this even legal?

Days b4 my next refill of Tardive Meds, Silverscript is denying coverage

As many of you know, I have a neurological side effect from the antipsychotics that I’ve been taking all these sixteen years. It’s like severe Parkinson’s.

I take meds for it. Expensive meds.

Silverscript, my medicare part D, has suddenly cut me off, just days before my next refill. Legally, you guys, can they do this?

Before you look away, some of you who are on antipsychotics, especially at high doses, will get this syndrome. It’s called Tardive Dyskinesia or a ‘movement disorder,’ and is also referred to as EPS, (extrapyramidal symptoms). No cure. Only symptom management.

The Nami statistics are 30-50% of patients who take an antipsychotic, whether it’s a traditional old school Haldol or Thorazine or an ‘atypical’ like Geodon or Abilify, if you are on these drugs for a decade, they say that percentage of us will be like Michael J Fox x 60. It’s also referred to as Parkinsonianism. It looks and acts like Parkinson’s.

I’m on a critical medication that is partly paid for by a charitable foundation, Caring Voices Coalition. My Part D, Silverscript, who is owned by the wonderful folks at CVS approved me thru Feb of next year. But we got a notice …..ten days before my next refill that they won’t pay. We have a piece of paper saying that I’m covered through Feb of next year, so how can they cut me off at the last minute? Ideas anyone?

My doctor appealed the decision twice and now we get a letter saying we have a right to an appeal. What they are doing midyear seems illegal. Ideas anyone?

Bullsharks in South Florida They Bite

bullsharkFLoutofthewaterThis is me, coming out of a long run followed by a two hour swim. I am exercise bulimic. I eat and then work out. I deal with Sharks.

Great Whites are more prevalent on the Pacific Coast and other colder water climates…I think Australia and South Africa have them. For warmer water and brackish water like we have in the Canals, (they have even found these bullsharks in the Mississippi River)!

I’m a thrill seeker and exercise addict (which has caused quite a few problems)… after a few orthopedic surgeries I temporarily turned to swimming long distances at the Olympic Pool at Stanford University. Later I began swimming way out in the Ocean, both in Mexico, Del Mar and finally now here in Florida. Boy, once you master the breathing and about 20 minutes passes, you get really high and I’m not sure why.

What keeps me from going out there now (but I’m going to return) are active Sharkbites not so far from home.  I saw a Mako and A skimmer out swimming a couple of times but once they saw me, they boogied. I live in Hollywood on the Atlantic Ocean. Bullsharks populate more northern areas of the Florida Atlantic coast like Vero beach and Daytona, partly because of the surfers, who they confuse with sea lions, etc.

We had a Bullshark Bite last week. It happened to a guy who was spearfishing and had loaded up the ocean water with blood. It’s called a “Provoked Attack,” in other words totally NOT the Shark’s fault.

Basically sharks are only interested in fish for food. We are too bony, in reality, for them.

I live in an area where there really is no food for them. But over on the West Coast, in the La Jolla Caves near San Diego, you’ve got all these seals sunning themselves on the rocks, and Great White
Bites are a plenty. Ten Miles up the Pacific is Del Mar, where there has never been a shark bite ever.

When I go swimming and there are schools of fish, I get spooked and get out of the water, right away. Anywhere there’s food, there’s bound to be sharks. They’ve got like radar and show up out of nowhere.

 

The Real Nina Simone (Bipolar Disorder Recovery)..not new movie

ninareal

Last night, we finally got around to watching what I was afraid would be depressing, the Netflix bio on Nina Simone, the REAL documentary, not the one that just came out with actors.

There was a lot of black and white in her life and I don’t just mean race. Growing up in North Carolina, because her family were church goers, she had just enough access to the church piano that her gift was noticed and nourished.

She was a heated civil rights activist and the music she wrote after the Alabama Church bombings like “Mississippi Goddamn” was banned from the radio. Today, they’d do a deletion or an edit and she’d so much press that her album would have sold like crazy. But that was a different time and she was a black woman in the 50’s 60’s and 70’s.

At one point, after years of abuse and overwork (she was the breadwinner and her ex-cop wifebeater husband her manager) she just broke down. You could see in her eyes that she was disaffected, disconnected…depressed and dead inside.

They took her to Switzerland in the 60’s and put her on Trilofon, an antipsychotic. What interested me about that was back then they knew and warned her about tardive dyskinesia…changes to her gate, neurological twitches, and the impact it would have on her kidneys. But she recovered….it did affect her creativity and improvisation with varying genres of music, she wasn’t as wild with her art. But she was happy again. And she lived to be 70 in the South of France, financially self sufficient and as she put it, ‘free.’

 

My Op-Ed “War on Drug Companies” Pub’d by S. Florida Sun Sentinel

My opinion is an inflammatory one, getting backlash.

This is the first time I have written about a topic other than bipolar disorder, my goal. It’s also the first time having  an ‘Op-Ed,’  (Opinion-Editorial) published in a big local daily. (Branching out before my books).

Normally I write for bphope.com (digital wing of “Bipolar Magazine,” “NewLifeOutlook,” and IBPF which is “International Bipolar Disorder Foundation.”

SunSentinel

http://www.sun-sentinel.com/opinion/commentary/fl-viewpoint-pharma-20160419-story.html

allicat