I did this video about a comment I’ve gotten my whole life and a new way or two to look at it.
I think I’m fat. No, just kidding.
I definitely need better hair. It did NOT look good up that day. Trainwreck.
I did this video about a comment I’ve gotten my whole life and a new way or two to look at it.
I think I’m fat. No, just kidding.
I definitely need better hair. It did NOT look good up that day. Trainwreck.
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.
So much is being made on black marketed prescription drugs like oxy and ‘the box’ that you gotta wonder The FDA and DEA are at cross purposes because pain advocates are pushing back, assisted by big pharma. Why not, right? The CNN Story with Anderson Cooper distorted it further. So much confusion we’re not entitled to ‘straight dope’ on this issue. I recently learned IBUPROFEN and Tylenol, my first line “go tos” destroy a digestive enzyme, furthering the constipation problem I suffer with it. hey, someone’s gotta speak up.
So, here’s holistic hope to hold onto, sorta..this will be a pricey pharmaceutical too: Hot off Press this week-Duke University Study isolated pain receptors TRPV4 and TRPAI and have a way to activate them; releasing natural endocannibinoids (not endorphine..that was debunke4d ages ago) to secrete natural painkillers for our comfort.
Organic stuff, sad to say, like MS contin, which I took for sixteen years, are actually better for your overall systemic health than NSAIDs which harm the liver and destroy digestive enzymes. Whoops I’m repeating myself. I just wanted you to know the knews. \
And I have yet another natural way of dealing with chronic pain in this article. A click is all it takes to make my day. At least you aren’t making Mark Zuckerberg of Facebook richer. If you click this, you are helping me and my platform. Am I going about this the wrong way? I should be listening to your aches and pains and I promise to do more of that. It, too, is a natural painkiller, releasing a substance called Oxytocin, the ‘love’ hormone begotten of human interaction with those you care about even if you’re separated by miles and held together by broadband.
Thanks to former BFF outta cash and cut outta the will. Dad can’t understand stuff like how 25 years psych meds and side effects, meds for the side effects for the side effects etc. It really DOES happen and according to him, it’s all my fault. She didn’t understand either, thought the salads for the prediabetic condition side effect and my compulsive carrying of back issues of the new York times to read in waiting rooms was ‘crazy.’ as she built her case about me in silence, totally two faced, she caused more harm than she’ll ever know. She relayed she thought her friendship was a ‘gift’ to me. It was. It keeps on giving, too. I’m still picking up the pieces!!!!!!!!
w/Stanford Volleyball and exercise bulimia the combination of tardive dyskinesia and my annular tear, three herniated discs, spinal stenosis and psoriatic arthritis…well most people would have offed themselves by now.
Dear Reader. If you’re still here the following is actually interesting reading.
And if I may say so myself, I’m published in the local tribune outlet, Meloday maker UK, Hits mag, The Album Network, Arizona Republic, Bipolar Magazine, NAMI and International Bipolar Disorder Foundation (IBPF) in San Diego, the city I grew up in. I am working on a piece on tardive dyskinesia, also called “Extrapyramidal symptoms” for Neurology today for their next issue. My current publisher reached our with both hands; requesting a movement disorder piece when their sole source of income is from a drug company. Tardive is rarer than ever but still, mighty white of them.
This is pursuant to the crisis caused by former bff projecting her 3 attempts going on a fourth suicidality on me, calling the cops and my father about my deteriorating state. He’s tried his best to help me financially in every way possible but….not have anything to do with the family. He just can’t figure out, understand how someone can possibly have so many problems. But then he’s never been on an MAOI or Clozaril or an antipsychotic causing tardive dyskinesia and a spiral of unending spasms and pain.
First order of business to take care of myself. Because of certain choices, side xfx, not all my fault. I’m not a bad person. Dad thinks so. I can’t afford to think that way. I make bad choices and things get worse! Physical, ongoing mental health still paramount. Pain, bowel still problematic. Still needing 290 mg (top) Linzess and once weekly emergency injections of Relistor, an 80.00 copayment even within catastrophic period. I’m still looking for a healthier way. 16.00 copay to see original pain specialist of three years, still picking people’s brains. Followed through w/appt. Saw a new, likely temporary pain doc (anti narc) studying to be an All Cash “Functional” (read: Holistic) Medicine”specialist. For a less toxic, least constipating solution, she wrote 7.5 Microgram Butrans patch, still a narc. She gets it. Copy Enclosed. Of course I didn’t fill it. I was just picking her brain for free, like I did when I first got Tardive Dyskinesia and saw 15 doctors who weren’t able to treat me and couldn’t admit it. They said ‘psychsomatic’ (Cleveland clinic female doc) were sexist, stigmatizing and didn’t want anything to do with me.. afraid I’d sue them which I never would. I just want to get well.
Still journaling the box, diet and exercise changes, trying to make it work. I’m in more pain but that’s not THE most pressing I hurt too much to exercise the way I used to– partially a good thing. Spine mindfulness, so to speak. Gentle walks, stretching and at home mat pilates swimming for now. Discontinuing Y membership and beloved NYT. 100.00 Savings. First Haircut in a year. Thanks, Clair. I don’t think you meant well. I think you need help for your brain tumor, beneign as it may be, it’s interfering with your decision making process. I feel for ya. I don’t feel so well myself. But we’re not good for each other and never will be.
They’re after me.
Who is that “Strong” Woman behind these pictures? That loudmouth writer, Allison “Strong?”
The fight has gone out. Bipolar Comorbid Inc. “Too much Information Driving Me Insane” (The Police)
But like Ali, the fire hasn’t left my eyes.
Last night binging “Bloodline” on Netflix, I heard the rock sax sounds of the band “Morphine,” doing a 90’s song, “Sharks Patrol These Waters.”
So looked for and found all my Morphine CD’s.
Predictably, they’re empty.
So are the Steely Dans. Go. Passive. Again. Find strength in that.
Here’s my new bipolar hope article. Please be kind and click to its’ source, Bipolar Hope, bphope.com
(I’m measured by clicks).
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:
Tardive Vlogs Utube
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
This practitioner calls Suboxone a ‘stealth’ drug. Read it. You’ll see. There is not a lot of press coverage on the use or lack of use on this drug. There is an alliance organization that matches people up with doctors but it says the limitations on how many patients a doctor can treat at one time…waiting lists, they say it’s easier to just get placed in a research study.
Doc, I need some help getting off this stuff.”
My new patient Marshall*, a pale 63-year-old man who lugged around a portable oxygen tank for his breathing problems, had been stuck on pain pills for years. Sharp pain from a gruesome factory injury to his shoulder 25 years ago had evolved into a nightmarish, shock-like nerve pain down his arm to his fingertips. A succession of medical treatments culminated eight years ago in prescriptions for daily use of oxycodone.
It had worked well at first. But after a few years, he descended into a continuous state of opioid withdrawal. At best, he felt mildly anxious and tremulous. Two hours after each dose, he would skid into a wretched state of sweats, gut-knots and dread. His whole body screamed with a pain unrelated to his injury. He craved relief from the next dose.
Sometimes, out of desperation, Marshall would take the next dose early. In exchange for the immediate comfort, he would accept a guaranteed anguish starting days before the next refill was due. His previous doctor had attempted to help by increasing his dose. Symptoms would subside for a month or so, then return with a roar, growing ever more intense. His arm pain had been relegated to a minor annoyance.
The best solution to his cyclical torment was clear to me. I would transition him to a medicine called buprenorphine.
Opioid task forces springing up in the US at the local and national level have begun to cast a spotlight on the surging opioid epidemic and its deadly consequences.
Unfortunately, a sharp focus on the target of opioid “abuse”—non-medical use of pain pills that has led to addiction in an estimated 2 million people in the US, and to heroin use in 1 million—misses a fundamental problem of a much larger scale. Roughly 17 million US adults living with chronic pain are prescribed opioids for daily use. Many, perhaps most, are not thriving.
Yet without these pills, many find life intolerable. Neither patients nor doctors know what to do about it.
A readily available solution—buprenorphine—is a secret weapon largely still waiting to be discovered. And President Obama’s strong emphasis this week on medication-assisted treatment—especially buprenorphine—in his announcement of his plan to combat the opioid crisis, is therefore particularly welcome.
As a family physician, I am in the trenches with patients battling chronic pain. I have seen Marshall’s story played out again and again. Sometimes people are referred to me for help after limping along on opioids for years. Buprenorphine is often the best choice.
Some make the transition seamlessly. Others traverse a rocky road that tests their mettle. Ultimately, most arrive at our intended destination, experiencing a calm normalcy they can hardly believe. A tolerable vestige of their original pain is still present. Opioid withdrawal and its accompanying super-pain, sometimes known as “opioid-induced hyperalgesia,” have vanished.
Patients describe a sense of release from a box or a locked cage. One said, “I felt like a little troll trapped inside a bottle, a horrible feeling. And now I’m free. I’m absolutely thrilled.”
Buprenorphine is better known by one of its brand names, Suboxone, an under-the-tongue film laced with naloxone to deter non-prescribed use. In 2002, buprenorphine–alone or combined with naloxone—was approved by the US Food and Drug Administration as a treatment for people like another of my patients, Luke.
A gentle giant in a black leather jacket, Luke is a 20-year-old convenience store employee who casually enjoyed a Percocet now and then while hanging out with friends. Then he began enjoying one for relaxation daily after work, “like having a beer or two.” Eventually he found himself entangled.
To avoid the agonizing withdrawal symptoms, Luke began spending most of his income buying pills illegally. He risked arrest. He arrived late for work. He could not afford to move out of his parents’ home. The drug’s negative impacts on his life landed him the diagnosis of opioid use disorder—the latest medical term for the condition most people recognize as addiction.
Buprenorphine is often, in my experience, like a magical key that frees people from their seemingly inescapable dungeon. It is an opioid medication with a unique profile that fits the lock precisely. It blocks withdrawal symptoms and craving. There is no drug “high.” Patients trade sluggishness for a fresh energy. Best of all, the hovering risk of overdose death vanishes.
Buprenorphine was developed decades ago and approved by the FDA in 2002. Yet it remains nearly invisible, despite its potency against a fiendish trio of adversaries: withdrawal symptoms, craving and overdose death. That’s why I call it the Stealth Medicine. It is hidden behind the term “medication-assisted treatment,” which also includes methadone and naloxone. Buprenorphine is the only one doctors can use to treat opioid use disorder in their patients with chronic pain.
Any doctor can prescribe buprenorphine for opioid use disorder, after undergoing a brief training required for authorization, known as a “waiver,” from the Drug Enforcement Agency. Only a tiny minority obtain the waiver, however. Due to federal rules, the number of patients each one can treat is strictly limited—to 100, although President Obama’s plan will increase that to 200—and other prescribers (nurse practitioners and physicians’ assistants) are not eligible for a waiver.
Ironically, there is no such bottleneck on access to the opioid pain pills involved in the deaths of 19,000 people in the US in 2014.
Read more from The Influence:
There are strict rules constraining use of the waiver. For one thing, the patient has to have a diagnosis of opioid use disorder. This diagnosis implies a stark but false distinction between “legitimate pain patients” like Marshall and “drug abusers” like Luke. The same dreadful craving afflicted Marshall, who lost his struggle to use pills as prescribed, and Luke, who never had a prescription. Buprenorphine brought relief to both.
“Off-label” prescribing for chronic pain is perfectly legal without a waiver. The limited research available supports this practice: It shows that a switch to buprenorphine improves pain and quality of life.
But here’s the catch: Without a diagnosis of opioid use disorder, buprenorphine is rarely covered by insurance. With the diagnosis, it usually is. Under Obamacare, insurance companies must provide coverage for treatment of substance use disorders. Luke pays roughly $10 per month for this otherwise pricey drug, which can run to hundreds of dollars without insurance.
The case of Marshall, the patient with arm pain, illustrates the awkwardness of this situation. He never once used opioids for euphoria or relaxation. He never committed a crime, never harmed a relationship with family or friends, never even pressured his medical providers to obtain more of his drug. A diagnosis of opioid use disorder was a stretch. But I made the diagnosis based on his unwelcome craving, and his inability to resist taking doses earlier than scheduled despite known consequences. This diagnosis allowed him access to this life-saving treatment.
Other insurance quirks can create frustrating obstacles. Lily is a trim and perky middle-aged homeowner, a responsible caregiver to two grown children with special needs. For years, Lily had been prescribed oxycodone for arthritis in her spine. She described what happened.
“The longer you take them, the more they make you hurt. It creates pain. You get tolerant to it. And then you think, I’ll take just a little more, and then you take a little more, and pretty soon you hurt worse than you did before you started taking them. The brain creates this fake pain, a magnified pain that really isn’t there. In between doses you would get a depressed feeling, because you knew you weren’t supposed to take another dose, but you hurt, and this becomes cyclic. When you take buprenorphine, you get your whole mental stability back. You don’t have to worry about driving or feeling dopey. It gives you your life back on a plate.”
Since starting buprenorphine for opioid use disorder, Lily had begun walking two miles a day. For two years, she often had no pain at all. Insurance coverage was in place.
Then the insurance company discovered she was not enrolled in a chemical dependency program. She was thus deemed noncompliant with their requirements for buprenorphine coverage. Payment for the next refill was denied.
A formal treatment program would be overkill even for a patient like Luke, the convenience store employee, although he could certainly benefit from having a counselor. But what about Lily? Such a program would be an irrelevant intrusion.
I re-prescribed buprenorphine for Lily, this time using a diagnosis of pain. Coverage was denied. I appealed. Ultimately I talked with the medical director. He politely informed me, “Buprenorphine is not a good medicine for chronic pain, so it is not an option for your patient. But we will cover oxycodone.” Lily has since switched to a more flexible insurance company.
Robin, a stylish business executive, got coverage because she met criteria for opioid use disorder; after discovering buprenorphine’s unique effectiveness for her fibromyalgia, but before she found me to prescribe it, she had guiltily resorted to buying it off the street.
But what about Sally, a sweet 50-year-old lady on opioids for many years after an injury to her lower back? In a classic example of opioid-induced hyperalgesia, she described intolerable shoulder and neck pain after a demanding night at the community center playing bingo. She has always been meticulous about using her pain medicine as instructed, so she doesn’t meet criteria for opioid use disorder. But with exaggerated pain sensitivity, she might still benefit from buprenorphine.
The tides are turning. Many national leaders are now recognizing opioid addiction as a disease and not a crime. Now we need a more nuanced view of the challenge people face when their chronic pain is poorly controlled by opioids. Many struggle to use their prescribed pain pills as directed. Whether they succeed or fail, buprenorphine may improve their quality of life.
A sea change would be possible if millions of patients with chronic pain were switched to buprenorphine from daily pain pills. This would dry up the flood of opioids leaking out to the streets. Fewer young people would find pills and be tempted to try them. Fewer still would graduate to a gritty life of heroin use, or risk a death from overdose.
Doctors, patients, insurers and policy makers: Take note.
*Patients’ names have been changed.
Lucinda Grande, MD is a board-certified family physician who practices in Lacey, Washington. She specializes in chronic pain and addiction medicine. She has prescribed buprenorphine for opioid use disorder for four years, and currently prescribes it to 70 patients.