This Is A Cry For Help

This Is A Cry For Help

By Arianne Grand-Gassaway.

This is a cry for help. No, not because I’m considering suicide.

This is a cry for help for millions in pain. It’s a cry for those who are taking their own lives to end the agony they’ve been told that they  just need to learn to accept.  It’s a rallying cry for people to start talking about what’s happening, what has been happening for years now, to people with serious illnesses and injuries in this country. Virtually no one is talking about this in the public forum. This is the other side of the ‘opioid crisis’.

There are people right now watching the news, rightfully outraged when they see profiling and discrimination, human rights abuses, violations of civil liberties and civil rights. These are often the same people who will usually not tolerate torture even when it applies to terrorists or criminals; people outraged and outspoken about preventing suicide when they see a celebrity has taken their own life. All of these things are happening to people in pain as I write this yet there is no public outcry, there are few even expressing concern. Most of you will even think it hyperbole for me to use terms like torture, or profiling and discrimination. I assure you, it’s not hyperbole in any sense.

Arianne Grand-Gassaway

There is a chilling effect that has set in. It is now virtually impossible to separate the word OPIOID from addiction because the accepted narrative has made those terms synonymous. People have been misled by the intentional and masterfully crafted agenda regarding opiates. People suffering with chronic and intractable pain have become today’s lepers, untouchables, the invisibles, and people in pain are now looked at with suspicion and blatant contempt by medical ‘professionals’, friends, and even family members.

No one is talking about the tragedy that is unfolding as more and more people in pain are killing themselves. They are doing so when they are denied the medicines they need to mediate painful conditions and they feel that death is the only option left for them to end that pain. I’ve even had people call the stories of these suicides nothing more than anecdotal.  In my opinion, that statement is a shining example that exemplifies the willful ignorance regarding what is happening to the most vulnerable among us.

I get it. It’s hard to imagine someone living with pain all the time, especially the kind of pain that doesn’t respond to the drugstore standbys. For those not afflicted it’s almost impossible to imagine unending, constant, unrelenting pain and how it affects every aspect of one’s life. It’s difficult to understand how uncontrolled pain spirals into other serious health issues like sudden heart attacks, strokes, hypertensive crisis, and even cancer; or to wrap your head around the emotional ramifications, the stress, the sorrow, the anxiety at losing everything you once were.  But I assure you, even though you may not be able to imagine it, it’s all too real for those of us who are living it.

No one has been saved by the current hysteria, or by knee jerk policies and practices that become more prohibitive and restrictive by the minute. Despite needed prescribed medicines being denied to those who benefit by taking them, OD deaths due to illicit drug use continues unabated. We are bearing witness to another doomed to fail drug war and pain patients are merely the acceptable collateral damage.

This is a cry for help. The ‘opioid’ narrative needs to change. Patients with chronic pain due to serious health issues should be exempt from legislation or ‘guidelines’ We need to get this right

Arianne Grand describes herself as an old soul living in the mountains of California. In 2010 she sustained a C-spine injury in a tree cutting accident which causes constant, debilitating pain due to spinal stenosis, disc degeneration, and radiculopathy . Arianne also battles with Myalgic Encephalomyelitis, Fibromyalgia, and suffered with Adenomyosis for over 20 years.

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Bill Murphy

So very well written. So very spot on. Living with chronic pain is like riding a bike, a bike that is on fire. No one wants to hear about….the fire. So you say little and you smile. The pain can force you to the floor, writhing. At times it can seem to ease a bit, giving you a little hope. But it never goes away. So you find a place in your life for the pain, because it is part of who you are. It actually gets so that in those rare moments, when you sense the pain is somewhat less, you don’t feel right, something appears off. Often times you can’t sleep at night because of the pain, and then often times you can’t function the next day because of fatigue. Your doctor wants you to get out and be social when you can, so you do. People then doubt your pain, even family. So you smile, and you keep on riding the bike. Such a curious way to live.

jojordan

Great article Arianne. Although I’m not a pain patient I’ve witnessed the negative effect of these opioid policies. Both of my sister’s are dealing with chronic pain and they are suffering in similar ways you’ve described in your article. This has affected the rest of the family as it’s put a larger burden on us as caregivers. It saddens me that my siblings are now not only suffering needlessly but they are unable to perform simple tasks that they could do before being tapered off of their effective dose of opioids. Life has changed dramatically for all of us, since this anti-opioid propoganda took off, and not in any positive way.

Missy

Joe,
George W Bush!! REALLY??? 🙄

Linda

I know it must be difficult for some to believe that a pain could go on for so long. It’s hard to understand unless you have been there. So many different things can cause a lot of pain. I have lumbar pain L2-S1 and SI joints. Fortunately it’s nowhere else. But having lower back pain effects everything you do. You can’t limp on it, you can’t put it in a sling so you can avoid using it. You can’t avoid it. It’s not something that gets better the more you move around. I have to do stuff around the house early in the morning because by 10:00 I can’t do anymore.I wish there was a way to fix it, but there isn’t. It’s mine til I die. I so wish some of the alternative treatments would work, but they have no effect. Same with OTC meds. When I started going to pain management my goal was to be able to take a walk. I had been walking 45min-1 hour per day, also walking dogs at the shelter & my own dogs. Haven’t been able to do that for several years. I was able to do 15-20 minutes but not for over a year now. I have done well in the past on high dose long acting opiates. But now, doctors don’t want to rx high doses. They give some BS excuse why not. So, I am still wanting to take a walk.Gave up all my other activities. Now I’m having the fallout from not being active, very high BP,cholesterol, weight, etc. Media has been gaslighted into thinking pain patients and people with addiction are the same thing.I never abused my rx.I don’t drink.I don’t smoke.I do still have a little bit of hope though.

Stinky

The absolute war on opiate medications tells me that someone(s) are being paid off and are going to make a lot of money, even if it means the deaths of hundreds or thousands of Americans. There is no other logical reason to put people into a living hell, other than greed for a potential windfall payoff.
There’s already mountains of data supporting chronic pain patients needing and correctly using their opiate based medications without any addiction whatsoever. Yet the policy continues, even intensifies putting even more people into a personal hell they have never experienced before.
I spoke with a family friend, a MD from Germany about my care two weeks ago. According to him the fake Opioid Crisis is being written up and laughed at in the European Medical Journals. I can sum up our conversion with one quote from him regarding the quality of care I am receiving. “That’s Third World medicine in a First World country!”

mary

Can anyone help us who are suffering from our chronic pain issue that the CDC has put us on the path for death.

What happened to our EIGHT Amendment. Nor cruel & unusual punishment inflicted. Against who, other humans? YES!! Well I believed that has already been squashed one of our amendments has been violated.

We stand strongly for the constitution, but still yet I feel like my constitution rights are being violated. Nor cruel & unusual punishment inflicted upon who humans for all of us chronic pain patients & suffers.

Why can we not file a class action suit against the government & all who have taken part of this huge debacle of legitimate chronic pain patients. Tell the government stay out of our health issues by cutting chronic pain patients off a lifesaving medication that could give them somewhat of a life. Why make us suffer which is inhumane & unjust towards human beings.

We go on about immigration, but what about us, we have a right to be here, this is my country, dont kill me off because you think I’m the problem for the drug issue in the United States. Tighten the borders & don’t let the drugs flood our streets.

I said it before, as a chronic pain patient I have no privacy for my health issues & the medication I take, the government knows it all. So why don’t they have a data base filled with the chronic pain patient’s names & their history. Then allow those patients to have the proper medication to live somewhat of a life.

I’m a monthly going pain patient who see a doctor, goes to pharmacy & follows all the rules I need to have some semblance of a life & not to suffer cruel & unusual punishment. I want us all to file a law suit against my right being trampled by our government.

Someone please help us before you have thousands of humans continue taking their own life to have a break from being in pain 24-7. PLEASE HELP US!! God bless us all who hold strong & follow the legal rules of our doctors & pharmacies, all of my chronic pain patients.
I’m hoping everyone can understand how LIFE is important to everyone who has a life.

By Abraham Lincoln: By general law, life & limb must be protected: yet often a limb must be amputated to save a life is never wisely given to save a limb.

SAVE A LIFE!!

Raymond Fryman

My pain doctor got upset when I made a comment on his web page, about his lack of concern regarding my chronic back pain. He has yet to look at my history regarding it. When I asked him if he would like me to get my history of my chronic pain, he just said it wouldn’t be necessary. How could it NOT be necessary. He has no idea what my problems are. He just keeps pushing Methadone on me, to get me off my opiates. I’ve been on opiates for over 25 years. I’ve been seeing this doctor for 7 months now, and I’d like to change doctors. But these Florida doctors seem to all do the samething. I should have stayed in Calif.. If I can be of any help to you. I would be happy to do so.

Susan

This is what I keep saying! We are throwing the baby out with the bath water! Cleaning up the Opioid Crisis needs to be done. Treatment of chronic pain patients is a completely different issue. Walk a mile under my skin, feel a day of back pain, hip pain, have a day of neuropathy in your feet and hands feeling like they will burst into flames at any moment. It may change your mind.

Terri McFarland

Thank you for writing this article, I pray this very serious issue is brought into the open. So far we have been ignored and swept under the rug. here in Oregon, this started in 2014 with the state insurance making the decision to taper patients from chronic pain medications. Now the politicians have seized the opportunity to jump up on the soap box and shout “I’m fixing the opioid crisis” when nothing has changed except the people most vulnerable in our nation are suffering horribly. I don’t even feel like I live in America anymore, this is a nightmare that happens in countries with dictatorship. In my America, the people who represent me would never force me to suffer in agony this way! In August of this year, 2018 Oregon Health Authority will be voting to do away with opioid therapy. I cannot fathom the stupidity of this!!

Norma

Very well said and my heart goes out to you and all who have commented. I too have a painful disease that has no cure and know that dehumanizing feeling from even asking for pain management. Even more heart wrenching, a dear friend has a cancerous brain tumor whose oncologist refuses her any pain meds telling her to take Tylenol. She’s taken so much, desperate for relief, its tearing her stomach up and her head still throbs.
Doctors take an oath to “first do no harm”; how do they sleep knowing their patients are suffering? Have the people that make these decisions ever experienced real pain? Or give any thought to the ramifications on the disabled and elderly? Or that thousands of baby boomers are retiring every day and are dealing with medical issues that come with aging? What callous person would tell a burn victim to take Tylenol and do biofeedback?
I read comments from the candidates running for governor in Tennessee..one actually said pain problems are relieved better with Tylenol than any pain pill. Are they really that ignorant or do they all own stock in Tylenol? I want to refer you to an article in the Commercial Appeal newspaper on July 26th by Brett Kelman regarding 22 pain clinics closing down leaving hundreds looking for new doctors. He interviewed a 68 yr. old man who said “It’s a shame when your doctor is scared to help..I mean my God this is a miserable life. All I want to do is feel good enough to play with my grandchildren while I’m still alive. I’m certainly not after this for some kind of party”.
I know this is long but I must share one more story of a man feeling so helpless trying to take care of his cancer-ridden wife, he drove to the seediest parts of town looking someone who would sell him something for her pain. He was mugged. He is 86 years old. Nuf said.

Tori

This article, and others, have definitely let know that I’m not alone. Going places for events such as family get togethers, are getting so much harder to do. I’ve lived with RSD for over sixteen years and have been fully disabled for over the past ten. Since RSD can spread from limb to limb, it’s awful to know that what I feel in my right arm is now moving to my right leg and I will get no help. I feel isolated and scared. My pain keeps increasing and my anxiety is reaching a higher level than I thought possible. I also have several other health issues, such as ulneritis, depression, etc. (too many to name). It is not unusual for chronic sufferers to develop more issues. But it is very sad that so many of us are now looking at suicide as an option! Talk about feeling unwanted in society….. If I knew how I would push for a class action suit against the government to recognize that we do exist and that they do NOT know what’s best for us. It’s all so exhausting…..

Yvette

Give up, I am, dont have the energy the resources, not anyone’s interest here in Albuquerque NM, not even our news stations, see it worthy of a story

KURT JOHNSTON

Thank you for your posting it is the reality of those of us who are chronic pain pts who RESPONSIBLE Y use the “O” word as you so clearly pointed out are labeled with the politically correct word addicts, and are left really as collateral damage in this politically driven war on opiates. Here in Michigan with the new opiate law , Physicans who are truly caring, who say they would like to prescribe opiates to their legitimate long term patients who follow the one prescribed one pharmacy rule, but they are truly terrified of the Gestapo tactics being used to hunt them down and pull their licenses so they with years held low day they are sorry but they cannot lose their practices. CVS pharmacy is turning physicians in when they were prescriptions just so they can say they are in the opiate fight for the good of the people. My wife attends ALANON as we have a alcoholic son who has relapsed a dozen times and is 34 yrs old. She and her coven are so happy of this law as they see opiate use as heroin and eventual use and prescribed opiates as the same. So you can only guess our conversations and I sustained my several injuries as an undercover narcotics officer. So I won’t go on but to say thank you and perhaps this organization can forward your article and all their articles as well as the desperate responses to lobbying groups for chronic pain pts as well as Senate and Congress. Thanks again.

Robert Green

Thank you for this. I had a smaller back injury in the early 90’s and dealt with it for years without meds. It then got progressively worse. A car accident and 3.5years ago brought me to this point: five back surgeries in these past 3.5 years, with a sixth being scheduled. Nerve pain and nerve death in leg because of the overall length of time dealing with the back issues. Many nights throughout the years sobbing, with suicidal thoughts, because the pain won’t calm enough to sleep or function. Yet, when the injury comes up in conversation, the first question many ask is “what kind of medicine did they put you on?”. And then one of two looks: the look of someone who hopes you will “share” so they can get high, or the look of superiority. Never once do they ask how it feels to live with this. How it feels to have to take medicine to be able to somewhat move, or even get out of bed, in the morning. How to feel to be relatively young (45 in my case), and feel like the best years of your life are already over. Most assume that you are just getting high for it’s own sake, or selling them. Even worse are the medical professionals, knowing exactly what is wrong with you, becoming suspicious at refill time or when you tell them that the meds aren’t working as well as they once did. I can say that my current Neurologist is much more understanding, but that feeling never goes away completely. So, between the physical and mental anguish, I can totally understand how someone could be pushed to suicide, especially if cut off completely from the only thing that help. Thanks again for putting this all into words, Arianne.

Lynne mathis

Hi there what an excellent post tests running down my face as I write this….not from chronic pain …not today …I’m angry I’m frustrated..I’ve had RA since I was about 22 after the birth of my daughter I’m 65 now I was a nurse and a respiratory therapist taking care of people all my working life .I retired on disability about 20 yrs ago and have been taking opiates for about 30 yrs I have had a wonderful pain management specialist for the last 10 years …I jump through all required hoops but now I am having trouble getting my Rx filled same pharmacy as always . Did I forget to mention that I live in FLORIDA !!!!So my regular pharmacist gills my 60mg morphine ER script but refused my 30 mg morphine IR leaving me nothing for breakthrough pain .. no rhyme or reason !!!making another Dr visit needed to ask for something else He filled the Percocet Rx which makes me so nauseous that I fight to take it ……WHY ARE WE TREATED AS LESS THAN HUMAN ..but I refuse to let them win I WONT GIVE UP or GIVE IN God bless my fellow suffering souls

The Zookeeper

Thank you so much for writing such a succinctly accurate article affecting the QOL of millions hardly in a position to fend for themselves. 2 of my children and my son-in-law are in the military fighting for the freedoms of ALL. Imagine if our bravest military personnel fought for the freedoms of some? Every doctor/pharmacist in the US should remember who fights for their freedoms while they routinely decline the freedoms of some they deem unworthy of QOL. Each patient deserves the right to choose the therapy that provides for the greatest QOL and relief of suffering for them. #CPP are not a batch treatment group of people successfully treated with blanket therapies. While the medical establishment shoves treatments like mindfulness and ignoring our pain down #CPP throats those same doctors are the LEAST mindful of people of all. Look at the Five Factor Mindfulness Scale, only, intead of applying it to your own conduct apply it to your physician’s personal conduct. Most physicians hardly listen with one ear let alone 2; are thinking about the next patient while they are still seeing you, they are the least “in the moment” people in society. They are preoccupied with pandering to their egos, constantly scheming how to save face while their patients question their cut and pasted data, thinking about how they can get more money performing procedures that are over referred/performed and of questionable efficacy. When my physician is as present with me as I am with him then we can have an honest conversation about mindfulness. The ignorance of disease and suffering does not a treatment make; it puts all the load back upon the patient and relieves the doctor of actually having to do anything. Newsflash, doctors work for patients not the other way around. Any healthcare provider knowingly causing patient suffering is nothing less than a domestic terrorist; let’s just call them what they really are. Those who support the #opioidcrackdown are soon to be the ones vilified for their unconscionable torture of the sick. In fact,many of the people placed in positions of authority supposedly representing the best interest of the public, are doing little more than furthering their very private agendas which is to remove opioids entirely from access after they experienced the death of a loved one due to ADDICTION not #CPP, some were actually criminals.They’re nothing more than grief stricken people attempting to assuage their own guilt at #CPP expense. #opioidcrackdown

Terri Marsh

When the Pain clinic Nueropsch Dr told me that narcotics dont work, people actually have less pain when quit….told me that there would be testing with the pain pump, 2 injections with medicine, Morphine, 1 without. Because just the thought of getting the drugs is same effect as getting it. “Its like if she had a gun pointed at me, the threat is just as powerful in my mind as getting shot”
As i lay in bed where, now laying down is not helping. The layers of pain is layer layer…
Fibro psin may lessen, but Arachnoiditis has my feet on fire and legs in a charlie horse, and stake burning through back of my head from Chiari, and …..on and on.
This is torture. We deserve to have the right to be treated effectivly, as we pay for insurance to cover medical issues, and even if we cant afford insurance anymore.
We need advertisments, on TV, in Newspapers, on billboards to match all the ones against pain medicine. Show our side, our teeth may not rot out, and all the scarey examples they use dont apply.
We need to have a voice heard….

Laura

Totally agree.. this is all a bunch of people making decisions on our lives. That they have not experienced. Yet we are supposed to carry on like them. This is so far gone does anyone out there recognize that this is life or death for us. Us people living with Chronic pain everyday?

dis may

The current story line in newspapers, radio, TV, internet broadcasts is skewed; this is data spun with malice-aforethought. My masters work on the criminalization of opiates and cocaine clearly indicated that the agenda was to keep ‘certain people’ out of the workplace without taking it on the chin as ‘racist’. It was racially driven.
The ‘all men are created equal’ language in our constitution does not represent lofty ideals. It is a disguise designed to divide people and prevent social uprisings.Keeping people divided remains a pivotal goal with exponentially driven methods to achieve it. Electronic devices and platforms supplant eyeball to eyeball communications between human beings. Facial expressions, gestures, tone of voice, all the ways we assess personal information during communication get stripped away. Acceleration of division is today’s news. Pain medication marginalization is aimed at gender and class, not race. Older white women and folks of low SES; these are the people with chronic pain; to be kept out of the workplace. Today, in the US, Inactivity is the second leading cause of death. Does this even register in anyone’s mind? What does it mean? Why does inactivity lead to death? Anybody know? Anybody care? Does anyone in the US engage in critical thinking anymore? I am stupefied at the nonsense that is broadcast. Well, one caveat: I suspended all personal engagement with broadcasting at age 18. I am a media illiterate. I hear of media Broadcast from human beings I converse with. It amazes me and them how much more I know than they do about what is going on in this country.
I have so many questions about the status quo I could simply write a list of them and publish the list. Consider:
Is it a coincidence that despite 12 years of free public education the average reading level in the United states is at the 5th grade?
Is it a coincidence that the gender gap in pay is again widening, women losing more ground after an all time high of 75 cents on a man’s dollars decades into the goal of equal pay?
Anyone aware that inactivity is the second leading cause of preventable death in the US today? Why would we want children to sit still in classrooms, drug them to sit still?
if you do not treat chronic pain you get people inactive as well as out of the workplace?

Marty

Been off of my pain medication for close to four years now and I would not wish that on anyone, even those who has caused this abandonment CPPs, the addiction industry and their zealots who have no business interfering in the treatment of pain. I don’t blame the addicts or the greed of Big Pharma at this point in time. I place the blame at the feet of the CDC, DEA and Big Rehab. They are the ones who believe they know better than the patients and doctors who treat them.

Dee Eenst

Thank you for writing! I sincerely appreciate! I’m feeling so lost, alone. My husband “was” being helped by his PM doctor. Now it seems adversarial. He’s in pain all the time. His days and nights are mixed up. I have no one to talk to about this. People just look at me, say nothing. I guess they’ve been brainwashed to believe he deserves this. He fell off a roof at 16, landed on his head. He’s suffered from that. He’s got spinal stenosis, anklosing spondylosis, Osteoarthritis, knee’s are shot. I just learned he’s considered incurable. Doesn’t really matter. He’s treated like a leper. I guess I’m guilty by association. We’re struggling under the weight. I hope we make it.

Denise Hayden

In addition to pain, the cost to our quality of life is enormous. Many of us are under or unemployed due to untreated pain. We miss family & social gatherings. We can not volunteer, shop, cook and the list could run on.
Nobody is being saved & in fact, the consequences of another poorly though out war on drugs are worse than the problems supposition being fixed. When has a war on any drug been successful ?

Rhonda PARSLEY

Thank you for your advocacy. I have been a chronic pain patient for 23 years. I have systemic lupus, fibro, rheumatoid arthritis, osteoarthritis, spinal stenosis, radiculopathy, Sjogren’s Syndrome, degenerative disc disease, 5 herniated discs, hip bursitis, gastroparesis, osteoporosis (have lost 2+ inches in height due to compressions), costochondritis, chronic migraines,both knees are in need of replacement, and a few other conditions that also make life difficult. I have seen all type of specialists and the conclusion is that there is not much any dr can do for me except try to maintain my conditions. My pain specialist has said there is nothing more that can be done for me and that his hands are now tied due to the fake war on opioids. My medications have been cut by 85% although my dr believes I should be on MORE medication than I was on, not less. He literally had tears in his eyes during my last visit as we discussed this situation.

Before this “epidemic” hit and the CDC issued ridiculous guidelines for opioid prescribing that have been misinterpreted, I was certainly not pain free. I know that will not happen; however, I was able to do a few things like go to the grocery store with assistance and help my son prepare dinner. Now, I spend 23 hours a day in bed. The only time I leave my home is to go to a medical appointment. My quality of life is now zero. This is not only unfair to me, it is unfair to my son who has put his life on hold to help me. He is afraid to leave me alone. He attends every medical appointment and since he has training as a medical professional, he knows the seriousness of my condition.

I am begging our policy makers to please stop this misdirected war on opioids. I understand that addiction is a serious problem and have heard the repeated plea to stop stigmatizing addicts. Why is it okay to stigmatize pain patients? Our Attorney General, Jeff Sessions, has said we should “take an aspirin and tough it out.” I assure you that even if I could take aspirin, it would have zero impact on the level of pain I experience every day of my life.

Chronic pain destroys lives–not just the lives of the patients, but of our families and friends. It is time to give us our dignity back.

Kim

I agree 100% I am so sick and tired of being treated like some sort of freak who knows nothing about what I am talking about. I have lived with chronic pain for 20 years and unfortunately I am at the end of my rope. I had a great doctor who researched and worked with me to have some sort of pain control he has retired and I feel so lost I have been told it is illegal for this large medical institution to write scripts for pain!

If George W bush would not have turned a blind eye to get a new government in Afghanistan we would not have a heroin problem like we have seen in the past he let the Afghan government spread heroin all over the world just to get a new Democratic president. At the time cocaine and crack cocaine was our problem coming from Mexico so he didn’t worried about heroin. That came from a c.i.a agent working in afgan,showing a truck load of heroin.showing the guards calling up higher authorities to see what to do and the president’s son said to let it go.kazary or however his name is spelled.i couldn’t believe it if she. C.i.a would not have had it on tape showing it on live t.v. iv had 6 ops on my back and suffer daily.i feel bad for others and know what they go thru. Something has to be done.we should not have to suffer like this because of the stupidity choices of the curruption of our gov.

Bev

I’ve been on disability for almost 10 years now, and things are getting WORSE, not BETTER. I’ve got Degenerative Disc / Bone Disease, Spinal Stenosis, Fibromyalgia, and a couple of things that I can’t spell. I was managing it the best I could, and never dreamed that one day I’d have to choose a medication that I didn’t really need! Due to government getting involved, I was taken off of one of my scripts, just the rest of it to “wean myself off” and then it’s gone. I’m managing, but every day is a battle. I get so mad when I hear them talk about the opioid epidemic. It’s not our LEGAL, NECESSARY MEDICINE, it’s the ILLEGAL HEROIN, FENTANYL and whatever else the true junkies shoot in their own veins, that I can guarantee they DIDN’T get from a legit Pain Management Dr. like I got my rations. I’ve never shot up, I don’t plan to. But sometimes, I’m in bed all day in indescribable pain, for as many days as it takes to be able to handle life as best as I can. This is NOT the life I planned and certainly not a life I would wish on anyone.
I’ve lost many friends because of my inability to make plans. It’s one day at a time. I’m 56 and otherwise healthy, but every time I hear about someone that’s gotten a cancer diagnosis, I wish it was me. Then they could have their quality life that they’ve always had and I could die “naturally.” I could never take my own life because I had a best friend who’s son took his life and the family was never the same. She struggled with it terribly, until SHE died of cancer, now three years ago. I lost the only friend that understood me and my journey through the life I never thought I’d have.
As we all fight through this thing we call life, let’s all call our Representatives in DC and DEMAND that they know the difference between us and those that abuse ILLEGAL DRUGS they didn’t get from their PM Doc. I’m lucky in that way; my PM Doc has been doing this for almost 50 years now. He’s in his 70s and doesn’t want to retire because he’s afraid of what will happen to his patients that he’s grown to love and care about. But he still has to follow the laws that he believes should NOT be in place and that the government should worry about running the country and let the doctors be DOCTORS and care for their patients how they see fit.
God be with you all, and let’s all live to see another day. We can’t take our lives and let them win!! Nothing would make them happier than for us to all be a thing of the past.

Maureen

Bang on! How, do you think, we can draw serious attention to our plight? My family and friends won’t even discuss it with me. Fifteen years, three brain surgeries, and there’s still this attitude that I must be exaggerating. I’m not praying enough. I’m lazy. Do they think I want to live with three kinds of chronic pain? I’d be so excited to be able to drive my car again. Take the burden off my husband who married a bubbly, happy woman and now I can’t let him touch me! Being lonely and in chronic pain is no picnic. Why should we have anxiety before every medical appointment? Why is the DEA handing down the guidelines to our doctors?
Is this “opioid crisis” benefiting someone? Pain management patients don’t buy drugs on street corners. In fact, we’re so closely monitored our docs would know if we were taking more than prescribed, or something we had not been prescribed.
How do we get serious attention paid to our crisis?

Dee

First thank you Arianne, as you know I support you 1,000% I am so completely lost by what is happening. We, the ill, the weak are the enemy, why? Just saw Netflix preview, The Bleeding Edge. If only we could get the publicity. I pray every time I see something like this, people banding together, will help people in chronic pain. It is horrifying what is happening and most people don’t believe that this is happening. Until they go to the hospital for a surgical procedure and are given no pain medications afterwards. Or they hear of a terminal cancer patient UNABLE to obtain pain medications. Worst of all? HOSPICE no longer giving any pain medications to those that are dying. Palliative Care Office is afraid to prescribe any pain medications, opiates, narcotics, opioids what ever you want to call them. People in pain aren’t criminals! They are suffering, writhing in agony with crushing, burning, crunching, popping, pinching, punching pain. There is so much pain out there, how can people believe they are addicted? I think it would be easier if they were. They wouldn’t have to go through all the trials and tribulations, judgement, to get a pain management docto. Then getting a prescription, they would not have to go through the degradation experienced in many chain pharmacies. They have suffered from disease, surgical failures, accidents, war wounds. How dare anyone say they are faking? I just read one in three (! in 3) are disabled.Prescribing levels are back to where they were 10 years ago yet deaths have gone up exponentially quadrupling in some areas. People are dying from illicit fentanyl, disguised as percocet, vicodin, xanax, yet no officials are warning anyone.
We are Disabled NOT Disposable. The Government wants to go back to prescribing levels of 25 years ago, May I go back 25 years? I am a baby boomer. I have had three (3) back surgeries. Now I find that these surgeries may have been done to enrich my surgeon? How many operations were done to enrich surgeons? Now we are in pain suffering, no pain medications are allowed. So on NSAIDS I go, but now I am hearing they and tylenol are killing more people than opioids. I understand why people might feel they have no choice to commit suicide. The pain becomes so bad that one can’t think, the pain screaming in their body, mind, soul, until the only thought is flight or fight. Who can fight under these conditions? Where has our empathy gone? Where is our compassion for others?

Becky M

Well stated. Watching my mother-in-law not receive the medical help she needs for her pain condition is heartbreaking.

Judie Plumley

Go on Facebook and join your state’s Pain Advocacy Group. We are chronic pain patients trying to prevent more terrible laws from being passed, and we need your help desperately. Even 5 minutes a day.
We have to stop the madness.

Diana

Every time I hear or read some pompous, smug politician say that they’ve passed a bill to cut the number of opioid prescriptions in half, or similar nonsense, I just want to scream! They love to talk about the people dying from “opioid abuse” without even realizing all the street drugs that fall into the “opioid” category like heroin. DO NOT stop prescribing oxy and fentanyl and similar drugs to patients who truly need them because heroin causes so much death. And just try and stop the street drugs. Well, no, too many people making a fortune there.

People in chronic pain NEED these drugs. Doctors have to be able to differentiate between ‘drug seekers’ and people who really need it. The wonderful pain clinics are very good at this. Let’s have more doctors who specialize in chronic pain.

Steven

AMEN BROTHERS AND SISTERS IN PAIN!!!. EXACTLY, BUT HOW
??? IT HAS TO BE NOW OR THERE WILL BE NO ONE ON PAIN ANYMORE!

Sue McManus

There are natural medicines that can help pain. I have CRPS aka the suicide disease. I take 4 types of natural remedies and it has helped me go from bedridden to somewhat mobile. Is it for everyone? No, I’d never suggest so. But everyone can look into and see if there is another way to go to survive pain.

can anyone tell me when the gov. thought it was their business and their right to decide what we couldnt take. Did I ask them to be my doctor? And when did we become responsible for those overdosing. Same thing if it happen to me..It would not be anyone elses responsibility of my death. People please spend some time just thinking about this situation..I took pain meds for years and took it the right way and no problem. when it is used for pain, then that’s all the pain medication does. before people began to oversdose the DEA didnt think of us as drug abusers. when some foolish people died from it, then they made it our fault and began thinking of us as addicts what makes me very angry is…these same people shames us they would get their loved ones whatever medication they needed for pain..its a double standard here..we all know this is true..we will have to ban together and go by the thousands to D.C. and stay there until this mess they got us into is reversed and I mean fix it immediately. Please people. one day your family will be affected if it isn’t stopped right now. if they can do this to us..Imagine what is coming next. thank you for hearing me vent…

Terry

It’s Terry again, with an ammendment to my last comment. I wanted to mention that I have been seeing a chronic pain psychologist for the last six weeks. For the first five weeks we spent the time getting to know each other, building trust, listening to her lecture me on doing less in my day and maybe spreading out my yard and house work over a greater length of time rather than all at once. Finally, the techniques that she’s been talking about, dealing with chronic pain, came to fruition. I laid on her table, pillow under my head, eyes closed, she began to try and help get to a place mentally where my pain was being controlled, by me. It’s kind of like hypnotherapy except that I was mentally and physically doing things to control my pain. I’m here to tell you that it worked!!! When I stood up I was a little groggy but 90% of my pain was Gone!!! And I do mean GONE! She told me to take note of how long it lasted, which was one hour in my case. The process is that she uses her technique every time you come in, over and over again, the same words, the same exercises (mentally and physically), until the technique becomes second nature to me and I can use the technique on myself as often and as long as I feel it necessary. But how exciting! I was obviously very skeptical at first, as are most patients according to her, but now I’m becoming a believer. Maybe I will be able to lessen my pain myself using the techniques she is teaching me, and maybe it lasts for hours or just one hour, I’m not sure how it’s going to go but I have to be open minded, what choice do I have? I will keep you all informed of my progress, hopefully it’s my way back to a semi-normal life again, time will tell. God bless, keep your mind open to anything that will help you.

Alice Carroll

Well put Arianne. I’ve just finished reading a brief story in MedPageToday. iMedicalApps: Narcon Now This article states:
Every day in the U.S., 44 people die of prescription opioid overdose and over 7,000 are treated in ERs across the country. Over 2 million people in the U.S. are currently addicted to prescription opioids. The data for non-prescription/illicit opioids is even worse. As more patients either “progress” or switch from prescription opioids to heroin or fentanyl the number of overdose deaths has exploded.

Those 2M are us, according to the CDC and the last comment about “progress” is most likely due to patients being left to suffer by their doctors with no referrals, no pain medication and nothing to help survive withdrawal. I went to the CDC website which is linked throughout this article and read the various items they have prepared for doctors to determine Opioid Use Disorder, Opioid Morphine Equivalency Tables, videos on how to talk to patients when you are to reduce opioids or place them on Subloxone among others. They have created a series of educational videos for doctors on how and if to prescribe opioid medications and all this is based on the biased and false data from the 2016 Opioid Prescribing Guidelines for Chronic Pain. The CDC is taking these Guidelines as gospel and running with them to the max. While Richard Lawhern is writing to them and pointing out that their data are erroneous and conclusions are false. Needless to say he is not having any luck getting them to acknowledge him.

The CDC has charts showing prescribed opioids as a huge part of overdose deaths while Lawhern claims that over 80% of these people did not receive these opiates from a doctor! Herein lies our problem. The CDC believes doctors prescribed these opiates that lead to the OD deaths, that’s why they are targeting doctors and coming down on chronic pain patients. They also believe patients are diverting their medication to friends or to the Black Market.

How do we change the narrative and compete with the videos, charts and literature? In 2019 Medicare and Medicaid will change the way opioids are prescribed. Join Richard Lawhern’s
Alliance for the Treatment of Intractable Pain, http://www.atipusa.org which has tons of good info and is advocating for us. The only way to change the narrative is to get the media involved and to tell our story.

Gail Crandall

I thought you were going to suggest euthanasia. I have chronic pain from gastroparesis and my primary doc will not provide pain meds. I will go to a GI do for it. I also have tried some kind of herb that mimics the pain control of morphine (for some) but does not make one “high” its a type of herbal lettuce.

Mary Stephenson

How can we all do anything for ourselves when I haven’t left my house since July 2, to my doctor. I’m not one for giving up but sometimes I’m ready to for there is no end to this nightmare.

How can we 1 million strong rally around a stop to this insanity. I too like many of us suffer for over 29 years of chronic pain. I’m housebound and was living somewhat of a semblance of a good pain free life. Well 75% pain free I could deal with this. Well until the CDC stuck their nose into our lives. They are not dr. Not everyone on medication is a drug addiction its the street addict that started all this. I don’t go to street for my medication I got to a dr and then a pharmacy to get my medication. Not a street corner.
I feel like I’m living during the war and we are all to be irrecated! I feel that is what is happening to us! What can we do.
We wrote to congress, we gotten on web sites to voice our opinion but what really helps?? I agree we need to stand our ground and fight. I’m not a quitter!
Where do we all begin?? The medical company’s are a laughingstock of the day. And this insanity of inhuman treatment of another human is and should be against the law!

Terry

Thanks for the words of support. As I have commented in the past, our griping about how unfair it all is and the suicides, our pleas are falling on deaf ears. The only people paying any attention are the people on this forum, and that’s not many. We need an advocate who knows how to organize, gather support, get the word out, if I had the knowledge I would kick off a huge campaign myself. Two things, first, public opinion is NOT on our side, people have been brain washed by the media and the politicians, the public for the most part thinks we are just drug addicts, so right off the bat we’ve got at the very least, John Q Public is NOT on our side, Two, like I mentioned earlier, the general public knows nothing about us and our plight, which goes back to getting the word out to people who are NOT chronic pain patients AND getting them to listen, believe us, have some compassion and help us. Today, right now, the only thing the public knows for sure is that there IS an opioid epidemic and they don’t disseminate chronic pain patients from drug addicts, when in reality most of the opioid epidemic is from people overdosing on illegal and illicit drugs like fentanyl and heroin or a combination of both, not folks with legitimate prescriptions for opioids like vicodin, oxycontin, norco, morphine and alike, for their debilitating chronic pain. So there’s the rub, we need a group that knows the ropes, knows how to get the REAL statistics out there, organize a “million person march”, alert the media with REAL charts and statistics! So maybe a friend of a friend knows someone that knows how to organize things to the levels that we need. That’s what it’s going to take, because right now, today, nobody gives a hoot in hell about us and I haven’t read or heard about anyone talking about the chronic pain community and our grim futures without our opiate pain medication which most of us have been taking, without incedence, for years. So that’s my opinion and I’m sorry for being seemingly harsh and I myself a chronic pain patient who, like most of you, have been taking opiates for years without a failed urine test, running out of meds early, overdosed, in other words a perfect patient. So think, really think, is there anyone that you know who could help us be heard and get the million chronic pain patients a march on Washington or wherever! As always, God bless all of my chronic pain brothers and sisters, UNITE!!!

Cindy Lee McGuire

OMG!! Arianne, Never treuer words spoken.Thank you for your words.
Cindylee McGuire

Tim Guidry

Spot on ! I have contacted every politician in my district and get a chain letter in return.

Kris Aaron

I’m always amazed when the healthy “pain-acceptance” anti-opioid drug warriors tell us to suck it up and tough it out. Do these otherwise intelligent adults honestly believe THEY will never need opioids for chronic pain? Do they think they’re immune to a fall on the ice, a car accident, an unwelcome diagnosis?
Do they think they’ll never sit staring at a loaded handgun, telling themselves that tomorrow might bring relief (it never does) and they just can’t do that to their families?
If so, then they are as stupid and blind as the addicts who started out taking an extra oxy here, and a couple of percocets there because they “liked the feeling” and just knew they wouldn’t become addicted?
Sheer idiocy isn’t limited to income, career choice or geographical location. Some day Andrew Kolodny will probably need oxycontin for his back. Jeff Sessions will need oxycontin for some other painful symptom of ageing.
Oh, wait. I forgot — Kolodny, Sessions and their ilk will always be able to get whatever they need for their pain. They’re well-connected and will never have to wonder if they can make to the bathroom without screaming in pain. They make the rules but they don’t have to play by them.
The French empress Marie Antoniette said the starving peasants should “eat cake” if they didn’t have bread. She ended up with her pretty head mounted on a stake for that remark. I wonder what Kolodny, Sessions and their fellow anti-opioid warriors believe they won’t lose by letting us live in agony. I’m sure they believe they’re immune to physical suffering, just like addicts believed they were immune to addiction the first time they stuck a needle in a vein.
Good luck with that, fools.

Maureen M.

Dear Arianne, Excellent piece, very well said!!
On this site, the issue of pain related suicides is no secret. We speak of it often.
I am a person with Chronic pain/chronic illnesses for many years.
For now, I continue to get my medications from Pain Management, and I thank God each month.
I have friends around the country who also continue to get them where they live.
I am always stunned and heart broken when I read the stories of folks being cut off.
There have been times between doctors where I have had to withdraw and felt my true pain.
I thought I was going to die. Therefore I now know that I could not bear living in that severe pain. I am very afraid of my future. It’s a horrible way to have to live.
YET, I am not ignorant…each month I hold my breath until I leave my appt with my scripts in hand..for yet one more month.
I am one to roar from a mountain top that this is NOT an ‘opioid’ crisis but rather an ADDICT CRISIS! There is a huge difference. And we are not addicts! But taking us off meds is already sending our community to the streets… hence, creating a rapid increase in the addict and overdose population.
It is becoming more and more difficult to explain that to family and friends, because of the wretched CDC and media.
We truly need ‘healthy leaders’ to take us to Washington, to town halls, to anywhere that we can start forums and attempt to be heard. We are ill…most of us cannot travel. But those who can need to begin praying for strength and organization to start the balls rolling.
We have done everything else that we can do from our homes. We need to stop talking and start moving….may God bring us the leaders and give us strength.

Carrie Wisner

I totally agree with David Cole’s comment, although I’m sure you’ve already done that. Thank you for speaking the real TRUTH & for sharing all of our thoughts.

mike_inpain

your one hell of an advocate and survivor..you a have been banging the loudest drum since I’ve been on Twitter and you refuse to play by their rules ..a natural leader and overall very caring person and writing this very important article just proves that there is no sign of you slowing down or giving up..I truly hope that enough eyes and hearts come across this read and makes an impact on our current situation of pain misery agony and unessissary torture ..your an angel on the shoulders of each and every chronic pain patient without a voice without hope and without compassionate pain management care …you will always be a hero in many peoples hearts including mine..God bless

nana

I see many of these notes have been made during the night.

I also lay awake much of the night worrying.

A big part of this crisis is our being able to sleep. Even if you are not in great horrific pain this is stressful. You lay awake most of the night just thinking about this crisis. Wondering if it will never end..(I don’t worry about Ever- because I know the stigma will Never leave me.) Wondering if life will ever go back to semi normal.

Patients who have chronic acute and non-ending pain (especially from a permanent and stable injury or health condition that will NEVER GET BETTER AND MAY WELL DEGENERATE) are being denied help as we all know. But what is not being considered is the added stress of worrying what the future brings. How your family will do without you. Or even less dramatic but important how your family will handle the future WITH YOU.

I don’t take pain pills much. But I should. I keep a stool by the stove in the kitchen. I love to cook but it hurts my back so bad. Our house is quiet because I spend a lot of time in bed. I am grumpy. What kind of life is that?

That new Oregon bill is set to go to vote. It says No Opioids, No Exceptions. Wow. The algorithm is getting us again. Say it with me: #WeArePeopleNot#S – #UseTheHumanEquation #TreatUsAsIndividuals

Arianne Grande is a powerful voice in advocating for painful disease patient rights. She speaks the stark truth of what is happening to us, nothing short of a genocide of a large group of the population, deemed to be not worth anything by those in “charge” of public policy. We MUST speak through the power we possess at the voting booth. This is the only way we can rally together as one and make our voice heard resoundingly. We can not afford to vote by party. We must vote by who supports chronic disease patient rights and physician rights in treating patients without government interference. We have to let politicians know we WILL support them IF they support us, and ONLY if they support us.

Dragonfly

If this was the LGTBQ community it would not be tolerated. I’m not downing them but if we get together and not tolerate the way they dont tolerate maybe something would get done. I been without pain management for over a year.n I get told every three months no! Yes I am desperate and I am tired. I’m on the couch crying now. GIVE ME BACK MY QUALITY OF LIFE!!!!!!!!!!!!

Neldine Ludwigson

It’s why I keep hearing Doctor Ruger calling from the safe. Only thing stopping me are the people who might be hurt, though I wonder where they are and have been while I struggle. Oh well.

Sherry

God bless you! Thank you for giving a voice to those of us that do not have one due to the complete lack of empathy and concern. Everything you wrote is 100% ABSOLUTELY TRUE. I am one of a million suffering. Maybe we need to start a campaign with that title, much like the METOO. Please do not think that I am comparing or belittling the METOO campaign or battle, as they are two completely different issues, however, I feel that our battles every second of every day are not even considered in the media. Everyone seems to want someone to “blame” for this opioid crisis-one can only look at the worthless media that coined the term themselves. The news is literally running our country and we are letting them! False news, lies, and misdirected attention is why we do not have a voice. Because saving lives or reporting on REAL suffering doesn’t make headlines. It’s absolutely sickening that the only attention our fight seems to receive is when it’s as extreme as a life lost! It makes me so upset and angry that I’m the country I love people are lacking in the medical support they deserve!! I pray with all I am that this gets resolved and those of us suffering receive the pain free life we deserve. For those out there that are contemplating taking their lives because of this horrendous pain, I be you, please, please fight another day. Why? Because you are loved. Because you have a purpose. Because you are truly special in your own way! And most of all, fight for another day so those bastards out there don’t win! Don’t let them take another life. I don’t know why we have to live like this, but I will be damned if I am going to let ignorance and sheer cruelty win. We will endure. We will win.

Sending love and positivity to all of my fellow chronic pain sufferers. We are together in this war.