Move Over, Movement Disorder: Tardive Dyskinesia and its impact on chronic back pain.

aquanotext

 

 

I know many are upset about the CNN report with Anderson Cooper on “The Opiate Epidemic.” I could go on and on about that one and my 16 years of a high quality of life due to these ‘dangerous’ drugs. Tardive Dyskinesia takes an injured low back and adds in jerky twists, turns and torks of my torso. Oh, my gosh. Even on pain meds I can feel the instant delivery of shots of pain from the twitching and spasm. Oh well. Seven years of STIMA and Chronic pain. So the topic of chronic pain magnified by tardive dyskinesia has come up because I finally had to quit using my ms contin after 16 safe, responsible, uncomplicated use. I even drove my dose down to a 1/3 of what is was before when I finally stopped due to side effects. 16 years. And I’m a person with a former history of substance abuse, exercise addictio9n, left handed, and bipolar. The very person they think is most at risk of going to the streets, to heroin or abusing their prescription. Puleeze!!!

Enough on that topic. It is what it is and that’s why I’ve stopped “Fighting” it.

ALTERNATIVE MUSIC THERAPY

I’ve been listening to 90’s hardcore Grungers “Mudhoney” and their epic “Don’t Touch Me, I’m Sick!” In my 7 years with Tardive Dyskinesia, regarding stigma, they lay it on thick. Real thick. Some doctors won’t even take you on.  They see you as a walking lawsuit. Not in a million years.  I’m in enough physical and mental pain and don’t want others to suffer just because I do. I wish Deb Houry from the CDC who says opiates don’t benefit long term, noncancerous pain!!!!!!!!!

 

But on Tardive I have really good news!!!!

A few years ago, I wrote about this. It’s food for thought if you are on an antipsychotic, new or old. However,  MUCH LESS CAUSE FOR WORRY side effect wise. Newer drugs are much cleaner of this neurological and even metabolic fallout.

Tardive Website links and Utube:

Blog: http://www.ibpf.org/blog/move-over-movement-disorder

Tardive Vlogs Utube

Part 1: https://www.youtube.com/watch?v=nCOR_YVo-ks

Part 2: https://www.youtube.com/watch?v=TqfEX8jl-Zs

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.

If you want their number it’s 844-455-8708

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.

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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.

Rejections are Regular in the Life of a Mental Health Writer

Part of this is an email I sent my best friend. I’ve submitted stories more places than I remember. International Bipolar Foundation welcomed me with open arms.

Here are two of the places that said ‘No’ more than once.

Marie Claire Magazine regarding two Eating Disorder pieces. I had them on the phone and received four emails expressing interest, only to  be told they had ‘overplayed’ the eating disorder topic, which they felt was only of interest to ten percent of their readership.

The Mighty. I find them to be too self congratulatory for me. “Haaa Haaa, this saying is cool, I won the war!” life isn’t that simple and I think they s**k. I don’t even read their posts.

This one really stung:

“Stigma Fighters” They rejected me twice but when I read their 1000 word rambles, I think it’s a whiny freak show and they are furthering stigma, not fighting it. By the way, they invited me to submit a third time and when I didn’t they blocked my from receiving their posts. I wrote Sara Fader and Allie Burke asking why I don’t get their posts anymore and neither of them replied.. But they sent me a t-shirt.

Did they have an email tracking system showing them that I only read half of their posts?Back then they were sending three a day and I couldn’t read them all, I saved them in a ‘stigma fighters’ folder. I was going to read them……just to be supportive. Maybe it was my comments on the posts themselves, which I did to let the suffering writers know that I had ‘heard’ them, that someone was listening.

******

HERES THE GOOD STUFF

The best part of the story is this: I invited myself to write for bphope.com (Part of Bipolar Magazine). I sent two stories and was gently told it wasn’t what they were looking for. I was given the line about ‘we’ll keep your materials and next year..bla bla’ Well, I asked if I could submit again and this time it went well. I’m on a three month trial period of once a month and so far the editor is really nice and supportive.

MORE GOOD STUFF

I applied to another publication two months ago. I heard back a month ago from their content integrator and was given a thirty day deadline to write a story. I gave them two topic choices and they choose “Mindfulness.” I asked for their style manual and it had all this stuff about prepositions, non essential clauses and tautology, which is like saying the same thing twice in a sentence in different ways.

Examples of Tautology: “My first priority is” (it we say ‘first’ we know it’s a priority, right?)

“Depression casts a dark shadow over our perception.” (Well if it’s a shadow, we can presume it’s dark, right?)

The style manual was so above my paygrade that I googled ten English terms, reread Strunk and White and worked for three hours with my mom, going over every paragraph with a fine toothed comb.

We don’t know yet if they like it, and it was really hard upholding their style and grammatical standards and coming up with subheadings so that my topic could veer off course slightly, for example, going back in Mindfulness’s history all the way back to the first Buddists in 300 BC China.

It took at least thirty hours to write this story and it’s a paid position. I don’t yet know what the money is. I’ll let you know on that. It’s probably variable, depending on how you negotiate it and how much they value your work!