For Prince’s sake, Cut 2 chase, cut the carnage, widen access to MAT & wipe out black market!!

atcomputerprincetwo

I heard about Prince. So tragic. The Suboxone thing might not be the answer but it does reduce mortality by accidental and intentional overdose by 50%. Restricting access and insisting everyone immediately wean off does nothing to address the 8 in ten drug abusers/addicts who originally took narcotics for pain, both short term and chronic. Studies show 99% of them will relapse back onto heroin or worse. When you go to the street you get no medical warnings or advice and you never know what’s in the drugs you are buying.

I don’t think “The Box” is the Answer, in fact, I wonder about it being its’ own Satan, the negative facts suppressed for profit.

Everyone makes out, the pharmacies, drug dealers, doctors, drug companies…everyone but us.

Rapper Scarface: “We Can’t afford our drugs so we all gonna die CVS is slingin dope on every block worldwide!!!!!” They don’t have any responsibility to use because they’re in healthcare…why should they????? Not necessarily. Then there’s the beaurocratic nightmare of federal officials trying to do the right thing coming up against powerful lobbyists who want the Oxy to continue because it IS safer if used as directed. I had conservative, safe, minimal use of MS contin for 16 years before I quit because of side effects, my body unable to relieve itself of the meals eaten yesterday. That can kill you too. Then there’s the prescription laxatives that only buy a few more years of time. But we’re all buying time.

I for one am sooooo tired of paying for everyone who is chasing a high. I kid you not. I used to be an addict, now I’m not. Furthermore, I don’t abuse drugs…they abuse me. That’s why I quit. Cold Turkey. Done. Hundreds of leftovers left over that I rarely think about. Might need them if I get in an accident and access is so limited I can’t stand it. I’ve had ‘failed surgery syndrome’ when the bones of my feet wouldn’t knit together lasting three years after surgery, steel pins holding my feet together. Foot pain worse than back pain. Of COURS I took narcotics. Then, when they healed I immediately stopped. But the point is I was in legitimate pain due to doctor error and on pain meds long term and then stopped for ten years until my next ortho operation, thanks to ongoing exercise bulimia.  The switcher upper in my fight against cocaine addiction to suppress my appetite. It’s all sort of a hazy dream and my family has now disowned me. Bipolar My fault. My foot problems, my fault. Every new side effect or illness, my fault. My choice. This has been going on since DX.

I’ve been dealing with a night mare that would drive someone less stable to drink or another unhealthy coping  mechanism. Stigmatized by family since my diagnosis of bipolar, Stigma and I are fast friends. Because it came from family I associate it with love and don’t know when to walk away like in the case of the “BFF calling the cops on me and saying I’m suicidal, even though she’s got the plan and the means to attempt it for a fourth time secretly stashed away in her closet. And then this…….It’s about reverse diversity….do ya feel me?

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.

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.

Washington Post re: Prince, Buprenorphrine, barriers to access, stigma

prince

You guys….there’s a story here and it’s bigger than we know. There’s a better drug for pain, and we have no knowledge of it and even less access to it. Prince was going to go all the way to California for it. You know what killed Prince? He ran out of time and stigma. I’m having some of the same problems. The side effects are killing me. I take less than prescribed. Somedays I excruciatingly don’t take any in order to keep my dosage down. But the side effects. Buprenorphrine is cleaner, doesn’t go through your digestive tract, doesn’t burden the kidneys and even has a ceiling on how much it can affect or slow down your respiration, so it’s way safer. What is the deal????????????????? No one is talking.

By Maia Szalavitz

PostEverything

May 9

Maia Szalavitz is a journalist and author, most recently of the forthcoming “Unbroken Brain: A Revolutionary New Way of Understanding Addictions.”

Prince performs at halftime of the Super Bowl in 2007. (JEFF HAYNES AND ROBERTO SCHMIDT/AFP/Getty Images)

Prince’s greatest music hit the radio while I was going off the rails during my own opioid and cocaine addiction. The young man who gave me my first injection was a massive fan and played “Kiss” for me around the same time he introduced me to the needle. I was soon hooked on both Prince and injecting.

That’s why it hit me especially hard when I learned that this musical genius’ overdose death occurred a day before he was due to start treatment. This tragedy makes clear that what likely killed him, and is killing so many others, is not just addiction itself, but the stigma we attach to it and, even worse, to the most effective treatment for it.

If we really want to stop the overdose epidemic, we need to get serious about providing the only treatment known to reduce the death rate by 50 percent to 70 percent or more: indefinite, potentially lifelong, maintenance on a legal opioid drug like methadone or buprenorphine. The data on maintenance is clear. If you increase access to it, death, crime and infectious disease drop; if you cut it short, all of those harms rise.

ADVERTISING

 

 

 

Prince was supposed to see a doctor, known for using buprenorphine to treat addiction, just a day after his death. But most patients — even most celebrity patients — do not actually get this sort of evidence-based care.

Indeed, most people concerned with opioid addiction don’t know that they should be looking for maintenance, or they avoid it thanks to the stigma against long-term medication treatment — research shows that maintenance patients experience prejudice and discrimination from family, friends, health care workers and employers. Even I perpetuated the stigma myself in the past, in an anti-methadone op-ed in the 1990s. At the time, I thought that simply having experienced addiction qualified me as an expert and incorrectly relied on anecdote, not data.

For both methadone and buprenorphine, access is highly limited. Only 30,000 physicians are licensed to prescribe buprenorphine, but most who are licensed don’t prescribe it and each is currently limited to seeing 100 patients. When used for addiction treatment, methadone is regulated to an extraordinary degree — it’s illegal to prescribe outside of those rundown clinics, and NIMBYism keeps them located in poor neighborhoods.

Minneapolis fans: Prince’s legacy ‘will live on’

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One day after music icon Prince was found dead at his suburban Minnesota compound, music fans were still in shock, as memorials grew. (McKenna Ewen/The Washington Post)

To top it all off, the 12-step support groups that addicted people are urged or even required to attend as part of treatment often see people on maintenance as not “really” in recovery.

These practices are deadly. We’ve got to get over the idea that medication for opioid addiction simply “replaces one addiction with another” and doesn’t count as getting better. To do so, we need a far better understanding of what addiction really means.

In many people’s minds — due to concepts popular in the ’70s and early ’80s — addiction means physically needing a substance to function and becoming physically ill when deprived of it. From this perspective, the biggest barrier to quitting is suffering through the nausea, pain, shaking and diarrhea that accompany withdrawal. And, from this point of view, people who are on maintenance treatments are actually “still addicted.” But this definition of addiction was dropped by experts long ago.

One reason this view fell out of favor was the rise of crack cocaine. Cocaine and stimulants, like methamphetamine, don’t cause physical withdrawal symptoms — if addicted people suddenly stop taking them, they don’t get physically ill. However, they absolutely experience irritability, anxiety and craving that is every bit as intense and likely to lead to relapse as that associated with alcohol or opioids. This makes stimulants like crack highly addictive.

Though we tend to think otherwise, physical withdrawal isn’t the main barrier to abstinence; instead, craving and the sense that drugs are essential for emotional survival are at the core of addiction. In my own case, I put myself through withdrawal from heroin addiction at least six times. Never once during these attempts did I relapse while ill. Instead, I returned to drugs after withdrawal illness had passed — not because I felt physically bad, but because I had convinced myself that “just once” would be okay.

So what is addiction if it isn’t defined by tolerance or withdrawal? Psychiatry, through its diagnostic manual, the DSM, sums it up as compulsive behavior that recurs despite negative consequences. This means that maintenance helps users conquer their addiction by replacing addictive compulsion with physical dependence.

Craving, obsession, intoxication and consequences are gone; tolerance and steady dosing mean that patients are not impaired and can drive, care for families and work. What remains is a physical need for the substance to avoid withdrawal.

And such dependence isn’t harmful, per se: We’re all physically dependent on oxygen, food and water, and some of us (like yours truly) are physically dependent on antidepressants or other types of medication. If the consequences of physical dependence are positive, it’s not addiction. Which is why I don’t sit around dreaming of Prozac, yearning for my next dose, taking more and more and hiding my obsessive behavior.

Of course, like any other addiction treatment, maintenance doesn’t always lead to recovery. Indeed, as with abstinence-only treatment — though at a lower rate — relapse is the most common outcome.

Importantly, however, unlike in abstinence-only treatment, patients benefit from maintenance even during relapses. That’s because, whether or not people continue taking other drugs in an addictive fashion, the tolerance provided by maintenance pharmacologically makes overdose death much less likely.

The ongoing use of other drugs during relapse explains why so many people see maintenance as a failure and maintenance patients as being constantly high — but retaining relapsers in treatment is a feature, not a bug. It reduces mortality, disease and crime and keeps patients in health care.

Unfortunately, most families and friends of addicted people don’t understand this. They tend to seek abstinence-only inpatient rehab because maintenance is stigmatized, and the media rarely highlights its dramatic reduction in mortality. Instead, we hear about relapse or people selling their maintenance medications on the street. Ironically, that street market exists primarily because we don’t make maintenance accessible enough. Maintenance drugs wouldn’t be valuable if people who wanted them could get them, whether or not they are ready for abstinence.

Prince’s death was awful enough. A man lost his life, we lost a great artist — and we also lost the chance for him to model and destigmatize the best treatment we currently have for addiction.

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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.

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?

 

 

Trying to Advocate in the face of Discrimination

I just tried to sign up for the Mood Network and apparently I already have! Memory loss from all the mood stabilizers (3) antidepressants (2) and Tardive Meds. Recently I became aware that because I have Tardive Dyskinesia, I am discriminated against as a prospective volunteer. These are places where I volunteered for years with a high hospital security clearance and facilitated/started/nurtured support groups for people like us. I am the face of something that makes drug company sponsored foundations uncomfortable. I’m ‘trouble.’ I find this troubling. Because I have decent verbal skills and am a writer and activist, this situation is even worse. I’m trying to soften a few areas of my message, like my blog, “Rebel With A Cause” to reflect something more positive. But America Loves a Rebel. It’s good to question the status quo and research what you put in your body before you do it, I think.

I mean how many things have they been wrong on? Vioxx, Saccarine, Thalidomide, Tardive, ADHD, I could go on and on.

To quote the ‘Arnold,’ I’ll be back. Allison Strong bipolarbrainiac.wordpress.com

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?

 

 

Stigma the Silent Killer

fighting mad

 

 

We often perceive us ourselves as “Other,” of “Different” and in my case, because I’ve been open to it in AA, I encounter a lot of shunning and discrimination for having trying it to escape the thunder of fear in my heart that is depression. So, AA folk often shine me on or scold me for what I share in relation to “Depression makes me want to drink.” I’m still sober and hangin on by a thread.

Drop Self Stigma. It’s like beating yourself on the head with a two by four. Oh, yeah, that will make you feel better