Mentally Ill Dying in Prison Transport Vans

This is What Riker’s Island Looks from The Sky

 

rikers island

When I was driving home from my tardive dyskinesia neurologist appointment in Gainesville I read an article that made me shudder. It could be me. Prisoners being driving from one facility to another are at the mercy of untrained people who drive the vans and have more of a trucker mentality. It’s about how many people you can get quickly from one place to another. So they jam the vans, deprive the prisoners of bathroom breaks, etc. When a mentally ill person doesn’t get their meds for three or four days they can decompensate and start babbling loudly or drooling, one person died of Xanax withdrawal.

 

I thought…’It could have been me.’ I’ve been privileged to have good care and avoid the hospital for seventeen years but when my former bff called the cops on me and told them I was suicidal, I was in a holding area very similar to a county jail. A long time ago, the eighties, I had legal problems re my drug habit and went to jail five times, so I know what I’m talking about.

 

The problem is the privatization of public prison and jail systems. These people know how to penny pinch but it’s at the expense of those they transport and their human rights.

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?

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.

Mystery Shopping While Manic part three

I am a person with bipolar disorder and during a period of very high functioning low grade hypomania, I was a mystery shopper. My sponsor in OA had been doing it forever and she taught me how to get in. It’s easy. If you want to know, email me at bipolarbrainiacSFL@Hotmail.com and I’ll go over it with you. I did it for a year and then had a rough experience with the completion of four lengthy reports I had to do over and over due to computer problems on their end. It stopped being fun. I had also done a few Dior Cosmetic counter shops where I was paid 80 bucks to buy something and keep track of their customer service. One thing led to another and I ended up in a Dior beauty class and I bought 700.00 of cosmetics. That kind of behavior could not go on. I went into debt.  One thing though, five years later and their beautiful five color eye shadow palettes are still in my bathroom, being used and I love them. They are 50 bucks apiece. Crazy, huh?

The expensive Dior face creams that promise youthful results are like 400 a jar. Crazy. Yet the mystery shopping made me want to buy them. I didn’t of course.

My next mystery shopping blog deals with restaurant shops. You get paid to go to these high end restaurants and pay attention to the hosts and servers. They pay enough so you can take a friend. In fact, they want you to take a friend.

Manic while Mystery Shopping

About four years ago I had a sponsor in Overeaters anonymous. She was a tough cookie. She was in her eighties and had survived two rounds of cancer. She was an accomplished and sought after mystery shopper. She did four jobs a week.

She taught me how to get involved. First of all, half of those offering assistance in finding jobs in the field of mystery shopping are fraudulent. They charge people for lists of mystery shopping companies. There are quite a few and some of them specialize in high end, shoplifting prevention and restaurant reviews to name a few. But this ‘charging’ for lists is bogus. Getting good jobs in mystery shopping is a different process. Here it is:

What a person needs to do is become silver certified by the MSPA, Mystery Shoppers Providers Association. Google that, pay them a one time fee of around sixty bucks to study their tutorial, take their test and get Silver Certified. Most mystery shopping firms, like ‘A closer Look,’ and Jancyn (sp?) require that certification before giving you anything.  You get the ‘silver,’ (there is a gold cert available but it’s inconvenient and requires travel. Then you start googling to find that list or request a list from MSPA.  My OA sponsor told me all that stuff. I still have my silver certificate on the wall. It has a number so that the mystery shopping outfits can verify that I am Silver Certified.

I got ‘in’ with a high end outfit who sent me to Burberry, Chanel Cosmetics, Dior cosmetic counter,  Aveda, Dior Couture, Ferragamo, Kate Spade, Coach Barney’s New York, Cole Haan, and other such stores.  I also ‘in’ with a few restaurant accounts. Each company  makes you study yet another tutorial on what that mystery shopping company wants from its’ employees. Then they have you on a list of available mystery shoppers. Sometimes they contact you for last minute stuff that you have to do and report on by the next day with an added financial incentive. A relationship with a mystery shopping company representative involves a lot of trading. It’s ok. If you do them favors, they will make sure that they save the more lucrative shops for you. It works out. But it requires constant computer access. Everything is done over the computer.

What you have to do for every different store job, is study and pass a test. These tests cover what the ‘brand,’ stands for and they type of displays, customer service, how long the line is, what questions they ask you, all sort of things that the parent company wants you to make sure that the employees are doing.  I get triggered in high end shopping environments. Since the jobs usually require you to purchase something and then return it, it can be a double trigger. One time I bought a pair of Ferragamo Shoes that I loved and had to return them. I have foot problems from excessive sports and I have to have really high quality shoes so that my feet don’t hurt. These shoes were 500.00 and I could not afford such a purchase. As I returned the shoes, I felt like a total fraud. I didn’t want to. But the job required that. For the next six months  I visited the outlet stores at Sawgrass Mills, searching for the same shoe on sale. But it was never available In my size. The amount of money they paid me to go there twice and write the report might have been forty dollars. It wasn’t worth the heartbreak. I’d have just as soon never known about this perfect black, stretchy shoe.

After a mystery shopping job, you have to fill out a very time consuming form and write mini essays on your experience with the retailer. Believe me, you have to do your homework and do quality work. If your memory is not so strong (as in my case due to psych meds) this can be challenging. And for a long one like a restaurant, they do not let you take notes because that would give you away as a corporate ‘spy.’

More on mystery shopping while manic tomorrow. There are some funny stories.

International Bipolar Disorder Foundation, La Jolla, CA

Print Page  IBPF

Involuntary Psychiatric Hospitalization

When I think about involuntary hospitalization, I feel vaguely violated. It was sudden, and it wasn’t my choice. I was deceived before the police showed up and slapped on the handcuffs.  It was personal and not. It hurt, bewildered and shocked me. Terrifying? For sure. Transformative? You tell me.

Due to a devastating divorce, I was trying to reshuffle my life. I had been in three states and had three shrinks in two months. Then I moved back home to California. Fourth and fifth shrink. Ouch. Don’t I learn from the past? There was a reason I left there in the first place. (By this point, I was picking and choosing from the prescriptions from the last four doctors like it was an a la carte menu.) I was messed up.

Then the phone rang. Usually it was me calling others, lonely and in need. It was Douglas from Florida, from the 80’s in LA. He invited me to visit. I flew out to Florida and never returned.  A month went by. Now I needed a new psychiatrist. I got a referral from a local pharmacy. 300.00 in cash, no insurance accepted. He was supposed to be ‘The Best.’ I choked that down.

On my first visit with this South Florida ‘Supershrink’ I was honest with him.  He went: “Get off of everything.” How do I do that? I tried but it was too hard. 2nd visit one week later: The money changed hands first.  His nurses tell me up front that they need my keys to move my car. The next thing I knew, the police showed up and hauled me away with no explanation. Ouch! They locked me in a holding cell at the police station. I was handcuffed for two hours on a gleaming steel table. I screamed and yelled that “I’ve gotta go to the bathroom” and finally peed my pants.

At the hospital it was explained to me that I had been “Baker Acted” because I was a danger to myself and/or others. A 72-hour hold or 72-year-old? My three roommates were all shrill, screaming, senior citizens with dementia. I had never seen such fury and disorientation.  I wondered, are they incontinent or are they acting out in anger? I never figured it out. The staff would not clean up after them. In addition, there were bugs and cracks in the walls and panels.   There were no programs, no central relaxing area, merely a dining room, a hall and our four patient bedrooms. I was frightened beyond words.

The second day a doctor showed up and I saw a famous actor in him (he reminded me of Richard Dreyfuss). I had a feeling about him right away. He was cynical, wise and compassionate. He studied me quite closely. For the first time, I knew my bipolar disorder had met its’ match.

“This is some kind of mistake. You’ve got to get me out of here,” and more rambling. I was still quite manic.

“Allison, relax, stay for a few days. I’ll put you on some medication and you will feel a lot better.”   It all came true. I knew that I wanted him to be my psychiatrist and asked him.  He wouldn’t agree right off the bat. That made me anxious. I was used to getting my way.

I still see Dr.  Rosenthal after fifteen years. Continuity of care comforts me. Others agree that it’s important to have a doctor who ‘gets’ you. He and I collaborate. He shares information on medications and research freely. He doesn’t give orders.  Sure, there have been side effects and rough patches. He has fished me out of the canal every time.

This hasn’t been easy but it hasn’t been nearly as disruptive as surrendering most of my individual choices to the one-size-fits-all rules and regulations that institutions need in place for patient safety and licensing.

Over the years I’ve seen ten or so other psychiatrists for second opinions and know who else is out there and how they think. One doctor didn’t allow me to speak. He looked at my paperwork and immediately threw me out of his office because of the meds I’m on. I think that he wanted to assert his authority over me. Ouch! Yes, sometimes I bite back. (But that day I didn’t-He could have Baker acted me if he wanted!)

I met my psychiatrist of 15 years in the ickiest place in the worst situation, or so I thought at that time. It worked out really well for me, though. At the very least, I learned to be extremely watchful over my mental health and careful about who I confide in. I haven’t been hospitalized since. But I would go if my life depended on it. I’ve had some close calls. Knock on wood.

Read more of Allison’s posts for IBPF here or at her personal blogs here and here.

Comments

Is this where I can ask Allison a question?

met ITS match!

I had been “Baker Acted” because I was a danger to myself and/or others – In UK we call this “sectioning”.

That’s my girl!And I am proudto say that. I am Allisons “husband” for almost 13ys.now. Sept.22 will be the full 13. I am so proud of you Allison not only for your writing which is superb but mostly for the wonderful warm strong and loving womanyou are. I love you girl, bipolar and all!!!!

involuntary-psychiatric-hospitalization

Weight Gain from Antipsychotics/Tardive Dyskinesia

Many of us bipolar and schizophrenics take antipsychotic medicine. I’m one of those who developed Tardive Dyskinesia, a syndrome of involuntary muscle movements. Normally they are seen in the mouth and jaw. The person looks like they are chewing constantly. Some people have it in their neck and their head bobs from side to side, rolling around all day. Most people can take Cogentin for this and it’s an easy deal for them. I was not so lucky. I get blackouts from Cogentin and Topamax, for that matter.  I went for a search for symptom control that lasted three years. One of the drugs that helps me with my symptoms, paradoxically is the first of the atypical antipsychotics developed, Clozaril.

Clozaril is a big weight gainer. I got up to 220 lbs. A former Model and actor, I have body image issues you can’t believe. There is more to the story of the risks of antipsychotic meds. The weight gain leads to metabolic syndrome (a disproportionate amount of weight around the stomach and into the internal organs), hyperinsulinism, and finally diabetes type two.

Once on Clozaril, I became a person with “Binge Eating Disorder.” Eating, itself, made me ravenous. I would be hungrier after an entire meal than if I never ate at all. Due to the fact that I also have ADHD, I went on the new FDA approved for Binge Eating Disorder drug, Vyvanse. I would visit the doctors who I see bi-annually and they would say, “Allison, you seem different, so clearer, there’s a light in your eyes, what are you doing differently?” (and that was before the weight came off!)  A psychiatrist I saw for a second opinion occasionally for the Tardive Dyskinesia was so impressed with the change in me that he doubled my dose without me even asking!  I was enthusiastic, happy, motivated to write.

Vyvanse is not on my formulary, so it cost 100 a month to be  on it. The weight fell off, taking a year to lose that 50 lbs. I craved salads and fruits, rather than sugar. I got tired of paying for the Vyvanse, and because it simply metabolizes as Adderall in the body, I started to use Adderall.  I had a good three years there. I had no food issues. But recently, I became uncomfortable with how the Adderall was making me feel. It wore off too fast and I was ravenous again. So I stopped taking on Memorial Day. And boy have I been depressed. Paid a high price for physical health. Let me ask you, what’s worse, depression or diabetes?  I’m still trying to figure this out .It’s almost been thirty days and I’m gaining weight quickly. So I’ve eliminated bread and sugar. I’m seeing an acupuncturist for weight control and depression. I don’t want to go back to this:   tribal 013outofthewater-001