Am I the most hated pain patient in America?

Am I the most hated pain patient in America?

By Ariann Grand-Gassaway

(Editor’s Note—When I saw Ariann’s tweet this week asking this question, I asked her if she wanted to expand. She did.)

Am I the most hated pain patient in America?

Hm. Maybe not, but I sure have been blocked, (censored), by a whole lot of people as well as by a few pain patient advocacy organizations. I know I’m not alone either, and I sometimes wonder if there’s a common variable on what we’re doing or saying to ‘earn’ being blocked.

In my case, as this relates to our some of our advocates, perhaps it’s the fact that I’m usually quite direct that earns me the block; using language that common people can relate to for the most part. (Including the occasional curse word, *gasp*.)

Perhaps some have taken offense when I remind non-CPP advocates that perhaps they should be interacting and listening to what pain patients are actually experiencing and needing, as far as their advocacy efforts go. Or maybe it’s that I’ve sometimes pointed out that very few of our non-CPP advocates come slumming on our threads to interact with us, nor engage much when we address them on their own threads. They do want us to share their articles and op-eds though, as well as support their efforts while showing our undying appreciation for it. And serious question: How can one know how to best advocate for someone else when they are so disconnected from those they claim to be advocating for?

Maybe I’m hated because don’t just ‘go along with the program’ like a good pain patient. After all, I’ve been told by both MDs and PhDs that pain patients just better get used to the PDMP as well as being drug tested like some parolee for the rest of their lives because those things aren’t going away.

Wow.

Wonder how that would have gone down in the Civil Rights era? Some Civil Rights advocate/activist saying, “Dr. King, you just better get used to being profiled, discriminated against, and accept the fact that some of ‘you people’ are going to being harmed and killed in the process.” I think he addressed that sort of narrative in the infamous Birmingham jail letter if I’m not mistaken regarding ‘white moderates’.

But I digress; sort of.

As far as other pain patients hating me, I don’t get it. I’ve never wavered from fighting for everyone in my advocacy efforts. I’ve never asked other CPPs to do anything I am not willing to do myself, and I tend to try to focus on the needs of all in my advocacy efforts while trying my best to not make it all about my personal situation.

I even advocate for people who have issues with SUD as the national ‘opioid crisis’ response has done little to nothing to help on that front, which was supposed to be the objective wasn’t it? In fact, the billions of dollars being funneled to profile, study, and target pain patients would be better spent on improving access and efficacy of addiction treatment options if the actual goal is to reduce OD deaths. At this point though, I wonder if that was ever the goal.

Can’t help but think that maybe my voice doesn’t matter in this fight very much anymore. Maybe our advocates really do speak for most CPPs and I’m just ‘out there’ in my absolutism. Maybe most CPPs wish I would just shut up already. I really don’t know anymore.

Most hated? Maybe, maybe not.

All I know for sure is that I’ve never wavered in my position on this issue where it counts. I try to spark discourse, raise awareness, encourage people, protest, make calls, write letters, and have done my best over the last 6 years to be consistent in my efforts to help try to turn this situation around so that people are no longer suffering or dying due to yet another doomed to fail drug war.

And let’s be honest, that’s what this is really about everyone; another drug war. And make no mistake, there are PLENTY of people who claim to be ‘helping’ who are making a whole lot of money by keeping the so called ‘opioid crisis’ alive.

Arianne Grand-Gassaway 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.

If you’d like to follow her on Twitter, her handle is @ravensspirit68.

If you’d like to me on Twitter, my handle is @edcoghlan

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I totally agree with all you’ve said and are doing. I’m right there with you! My problem is while I wasn’t force tapered to 90mme, I was cut to a 3rd of what was taking for near 14 yrs. I was legally approved by a judge and the court Dr who spent the entire morning going through my med records, for disability. I didn’t choose to wait 2 yrs for the hearing then be approved in all of 30 minutes. I did choose to get an education, pay for it, work my butt off to have a nice life, maybe retire w/o depending on social security. Face it the only way you can survive is not to need medication and live in a shack in poor part of town, take the bus bcz you can’t afford a vehicle or maintain one! Then unforseen injury/accident or illness? You try to work, switch jobs, different hours, less pay. Too much pain accomplish do any job, just to have some sort of income so you can eat. While you’re waiting for SSDI court, can’t pay the ins. that job you used to have provided, you’re going through all your savings paying for treatment after treatment looking for a cure, some relief, anything that will work! The funds keep dwindling. The savings gone, next the 401k, the vehicle then lastly YOUR home. 3 wks before I was approved they foreclosed on my home. Sleeping on a friends sofa w/ son and husband whom was doing his best to keep us afloat but barely getting us by with one vehicle, the insurance and maintenance, food, clothes, medicine, Dr’s, etc. After getting on Medicare, not even qualifying for medicaid bcz my disability case was pending, I found a pain mgmt doc who reviewed my foot high stack of records, scans, etc, and started me on a time release opiate along with an immediate release for the break thru pain. Eurika, until now. I lay in bed w/debilitating pain, make calls, send email, etc. Only on days I’m able to breathe& see straight! Is it really a wonder why so many are checking out permanently, our country causing & allowing it to continue for yrs!

Hans K Hildebrand

I like this article and agree with everything that was said and I send my best wishes to the author from the NH White Mountains. I am recovering from my 5th spine surgery. About 65% of my spine is bone grafts with 4 metal rods and screws, a steel plate and three protein implants. My right shoulder was severely damaged so I had what they called a salvage operation last year. I get painful skin rashes and conjunctivitis and its all from Reiter’s Syndrome which was triggered by food poisoning when I was 10. It never left and I became totally disabled at age 42 so I know what physical pain is!

Ali

The intracable chronic pain patients are not synomonus with drug addicts.
Our pain, foggy brain, profound fatigue, constant living to just survive 24 hours, and many more complications from multiple diseases doesn’t constitute addiction to Opoids.
Our use of pain medication is to
assist us in living a quality life.
Our withdrawal is not from addiction but knowing that the intracable chronic pain will return with a vengance. Compliant is not synomonus with noncompliant drug addicts.. The powers that be have never studied us as a group to understand our medical needs.
Physician’s, CDC, FDA, DEA, etc..
If they see that Opoids or pain medication is a benefit to our medical care they would need to admit there gross neglect. Intracable Chronic Pain patients are a population unto there own.
And as such need there medical care designed by there physician’s not the government.
Intracable Chronic Pain patients have been profiled injustly by this travisty of Injustice by the powers that be. Raise your dignity, speak out wisely, walk with determanation,
Opoids can be compliant, intracable chronic pain isn’t a disgrace, your health is more important than others judgement,
and know you are a knowledgeable human being with the abilities to understand your body.
As a septagenerian I’ve been profiled, dehumanized, bullied, yelled at, told I had mental issues, demeaned, devalued, physician abondement, medical care denied, and so much more since I was five years old and my first migraine. I have fibromyalgia, chronic pancreatitis, debilitating migraines, and cancer twice. So at least 65 years living a devalued life because pain is subjective and I’m a woman.

Joanna Pinne"Cra

Really and truly, this is not a diabolical plot to get rid of women, feminists, or ‘useless eaters’. Get a grip. This is Political Correctness taken to the nth degree. This is politicians who are too lazy to do any research, jumping on the ‘opiod crisis’ band wagon. Arianna you are awesome. Do not stop what you are doing. Kolodny will be brought to justice, on Judgement Day, if not before!

dis may

Ali is 100% on target. Let authorities in the United States stop trying to look good by going after pain patients. By redefining people with chronic pain ‘drug addicts;’ the abyssmal failure of of the DEA and other authorities responsible to the health of citizens to the extent that they prevent illegal people, things into the country: our authorities are abyssmal failures. Picking on pain patients as one way to look as though they are doing something responsible or worthwhile is such a cop-out. Pick upon the people who are innocent, villify them, then pretend a job is getting done (at all, let alone well.)
Is this intentional. Consider what current policy enacted does:
1. death from illegal drug use continues to grow exponentially; the sky rocket continuously gets more and more lives ended.
2. death from legal substances such as alcohol and nicotine continues to sky rocket. The two leading killer substances in the United States are nicotine and alcohol. Alcohol is a neuro-toxin! Tobacco products have carcinogens added to the product. Addiction to nicotine is encouraged. Nothing like comparable coverage given to astronomical numbers of people dying from alcohol and nicotine. Results: As in case #1. More and more people die from alcohol and nicotine use.
3. Legitimate pain patients, improperly labelled and treated are now suffering, unable to work and increasingly dying from the (NOW- as in since war on pain patients initiated) inactivity. Results, now we have added a large, compromised group of otherwise productive members of society from surviving. The ‘powers that be’ in the United States have increased the deaths –exponentially — of more American citizens.

Human behavior is purposive;whether conscious of unconscious (implicit) the behavior is goal oriented. The goal = the outcome. Authorities in the USA want pain patients to suffer and die ASAP.

Time to Unite: RB

The irony!
A few years ago I reluctantly reached out to my cp community & subsequently joined social media. This was not without hesitation. I was dealing with the loss of my parent, declining health, & my pain dr. Lost license & the clinic closed. One cancer scare & multiple surgeries later I was faced with being “iced out” & driven off social media. The reasons are debatable. Some of us cannot be in the forefront: and that doesn’t sit well with some in the community!

The pitfalls I had heard about became my reality. A couple of people (all it takes) can make up stories or perpetrate inaccuracies about you & it spreads like wildfire. You are all now experiencing this on some level. I guess the situation escalated in the community. Let me warn you if you are seeking legal advice for your situation: be careful who you interact with & what you share.

The one person I donated to who claimed to be on the verge of homelessness didn’t even vouch for me but that’s on my judgement or lack of. Who I am is provable & well documented: all “my friends” had to do was private msg. Me. I have a perfect 17 yr record as a cpp. I desperately needed my community. I didn’t feel hated but ostracized.

Arianne is a passionate person & very talented. My parent (passed away)has a block on the beautiful throw she tirelessly/painfully worked on. I think your just misunderstood. You probably wouldn’t remember me but I hear you loud & clear: You did one thing I wasn’t strong enough to do— your still standing. Don’t let anyone run you off! Theres regrets & I’m mad as hell about it. Glad you spoke up.

Ali

Illegal drugs been in this country for decades. Our government agencies after agencies to address this. Cary Grant and wife took LSD legally at a psychiatrist office to enhance life (1940-1950’s). In HS two friends went toask physician for Speed to loose weight. Did every HS year for $10.00 (1960’s).HS kids smoke marijuana on school campus daily(1960). Buy marijuana plants at garage sales (1970) for 10¢.
Our government agencies allowed these following travisties:
Syphylis study black men deaths.
No antibiotics given studied had horrible deaths. (1940-1950).
Thyroid radiation newborns latter had cancer.
AIDS patients hospitalized no staff knew nurse needle stick no
record of it.
Agent Orange veteran’s kids died lukemina gov. denied no benefits.
1990 medical community educated to patient pain and give relief don’t allow patients to suffer.
2016 new Opoids guidelines strip all pain meds from liscensed physician patients. Compliant irretractable chronic pain patients put in studies with drug addicts.
Can’t control Opoids on street so control COMPLIANT Intracable Chronic Pain patients patients. Stigmatized, bullied, labeled, profiled, refused medical care, loss of physician care, charted as drug addict, cursed at, loss of community support, etc,………
Profiled as drug addicts with NO
studies. Compliant irretractable chronic pain patients have been profiled as drug addicts without duediligence to evaluate OUR withdrawal, maintenance dose,
pain, disease, and our desires to be a contributing citizen. Suicides have paid a price. Our withdrawl, maintenance pain med, & disease’s are not synomonus with street drug addicts. Gov. Agencies chose a population they could control, strip care, and validate without any studies.
“See what a good government agency we are Mr. President”.
History of our government looking for scape goat to validate job security. I am a septagenerian, retired RN,CNN, and COMPLIANT Intracable Chronic Pain Patient my government has abandoned me.

Linda Holt Hart

Thanks, Arianna for your article. As a 40 yr CPP, and sometimes advocate, I identified with much of what you said.
Until 08/2016, for 15 yrs, I went to the same pain mgmt doctor. Because, in addition to my CP issues, I am treated for severe sleep apnea as well as narcolepsy, my CP doctor became scared that I might fall asleep behind the wheel and injure or kill another driver, resulting in him being held le fired me as a patient. After that, it took me until 01/2017 to get accepted by my current CP doctor (a trained anesthesiologist) – a gift from God.
At my 1st appt., which was scheduled AFTER he had reviewed my medical records, my new doctor told me that after 40+ yrs of pain pills his opinion was that pills would not adequately manage my pain. His suggested solution was a surgically implanted pain pump. Due to the red tape required to obtain insur. approval for the surgery, my procedure didn’t take place until 07/2017. What a life changer!m Once every minute the pump releases a microdose of morphine into a catheter that leads directly into my spine. If needed, I have a remote device I can use to signal the pump to release a smaller microdose of morphine that will be deposited into my spine. After the remote device has been activated 6 times in a 24 hr period, the patient (me) is locked out from extra microdoses until the 24 hr cycle expires. Because the amount of morphine is so small, I never get the highs and lows that pills used to give. Because the dosing is so small, I am able to have my pain adequately managed while staying under the CDC “guidelines”.
I apologize for the long post but wanted to share my experience in finally getting relief from the hell in which I was living. The message is: Don’t Give Up! There’s hope.
The pain mgmt practice that has pioneered treatment of CP with microdosing morphine using the pump is Space City Pain Specialists, located in Webster TX (Houston suburb). Check out their Facebook page for more info. Good luck to all!

Gretchen

THANK YOU TOO ADVOCATES FOR TRYING EVEN THOUGH THE USA COULD CARE LESS

Gretchen

I’m not a disposable born US citizen I’m tired and so are many others It is unexceptionable too be disabled and harassed because of it by the USA I no longer am a citizen of the USA I am just disposable for the agenda of people who don’t get it or care I believe It is about money and making money while myself and others cry trying too survive while no one cares or will listen in our government and acknowledge us America has condemned us and we are being touchared and dying for the wrong doing of others. As I die because of lack of care being called names made fun of It is awful America is the enemy of the pain managed and disabled so I am no longer a US citizen even though I live there I pray that something happens that the ignorant will get bright and save us but am losing hope they don’t care even though the OD deaths due too street users have still rose and keep rising even though they are killing people like me too save them NOT AMERICAN TOO PUT US ON DEATH ROW AND VIOLATE OUR HIPPA AND CONSTITUTIONAL RIGHTS SO GLAD I WAS BORN AN AMERICAN BUT NOT ANY MORE !!!!!!!!!!!!!!!! Thank You too the government of America for nothing!

No, definitely not hated, or at least not by me! I’m sure that others have blocked me for saying the truth (which is going to start to be talked about even more now), but I have had plenty of those over the past 20 years.

Keep doing what you do Arianne – you make differences in lives and how pain patients are treated, and while not always said, it is VERY much appreciated!

Janelle Dalstra

Sweetheart I’m so with you, but unfortunately, don’t understand your abbreviations. Could you expound more for us knew guys.

James McCay

Thank you Arianne, you brought up a key point I’ve let “roll off my back” because I’ve been fighting sports card & autograph forgery fraud for free since 1997 online because NO ONE ELSE would do it with MILLIONS being lost due to fraud every year (that I stop much of all by myself). I guess I became too used to being bashed constantly by the crooks I’ve busted and their sheep who follow them on “Social Media” (what a joke!).

HOWEVER, this should NEVER HAPPEN when we are fighting for our “Quality Of Life” or our lives completely (many pushed to suicide) and fighting for all others in similar CPP situations; as I’ve also been doing since 2016, until I found the National Pain Report which does what I was attempting SO MUCH BETTER than I could ever do!

My illnesses are very similar to yours- I have Advanced General Myasthenia Gravis or MG (with Hyperthymusism- so most meds don’t work right, or at all), Degenerative Disk Disease (four in my neck C3-C7 all with pinched nerves, and lowest back; L4 & L5/S1), lastly Fibromyalgia.

My worst “HATER” has become my own once great Pain Management doctor (a Chronic Intractable Pain Specialist) who trusted me as a PEER! Then he became so PARANOID by DEA letters that he CUT ALL his long-term (10-years+) pain patient’s opioids by 10%-30% and cut some off 100% only due to his PERSONAL FEAR! He refuses new patients for a year, as do ALL NYC Pain Doctors!
In NYC, 99% of “Pain Management” doctors expect patients to GET BETTER (rather sooner than later) or they want NOTHING TO DO WITH YOU! If you can’t do Physical Therapy (as I can’t due to my MG) they tell you “find someone else” (but never say WHO- even if you ask!). If you tell them the ONLY pain medication that helps you; they call that “DRUG SEEKING BEHAVIOR” and tell you to find another doctor! It’s a LOSE/LOSE situation in NYC!
Democrats have always run NYC- so what can we expect, right?

THEY’D BETTER FIX THIS CLUSTERF-CK IN NYC OR SUICIDE RATES WILL SKYROCKET!

Jody Hoffman

Your upset about being drug tested like some parolee? You know what I’m a parolee and I can tell you this, your not blocked because of a few curse words you use so the “common people ” can relate to you, your blocked because you are offensive, arrogant and are a danger to the rest of us. I don’t support you and ask that you be careful with your posts.

Walter Strickland

Hi to all.Well this is my 50% bad day.This is when I just want to die as the pain is relentless.Aireanne, just continue the good fight in your own way, don’t change anything to try to please others as your intentions are understood by us as a we whole in the CPP community.

dis may

I feel more irrelevant than hated. It does not matter what I say. What I say is this: The goal of this indictment of pain patients is to get rid of aging white females; rid them from the work place, rid them from the economy, rid them from the planet. They are feminists, most of them. They are pro-abortion. They are wise to the ways of the workplace. Those views are unwanted in this era of deflecting the problems in our economy away from the 0.0000000001% of human beings in our society who are making increased money at unbelievable exponential rates while, divided into quin-tiles, the lowest three quin-tiles have ‘enjoyed’ flat-lined income since the mid to late 1970s. The second quin-tile, with earnings averaging 200,000USD per annum enjoy very modest economic growth. The top quin-tile rakes in all the damn money: DO NOT LOOK AT THEM!! Pay attention to Donald Trump, too. He loves attention, and the billionaires love giving him attention. Especially after Jane Mayer published “Dark Money”. She got some attention directed towards these people who wish to operate under a clock of invisibility. (OMG! Not another conspiracy theorist!) But while on a conspiracy theorist rant, let me say I am SO very pleased that Richard Thaler won the Nobel Prize in Economics last year. Because, along with the Obama administration he made changes in social policy at the level of American Society, as a unit of society. In the beginning of his book “Nudge” he raises ethical concerns about changing peoples minds and behaviors without their knowing about it on the explicit level. Hence, it is not necessary to prove it can be done. Now I need merely suggest that this is happening routinely through broadcast media: television, radio, newspapers and internet. The science of implicit cognition, mathematized by Amos Twersky, was weaponized on US soil. Stop watching television, listening to the radio, reading the news and most internet activity. Get politically active. Talk together.

Martha

Hi Arianne! I hear your frustration with the medical profession, the CDC & the FDA. The LAST THING CPPs need is to ‘Pain Shame’ much like ‘Mom Shaming’ on social media. We need to ALL stick together and recognize that everyone deals with their personal story and their pain struggles differently. My injury is very similar to yours, so the more I move, the more I hurt. Perhaps some Advocates, etc., might try to remember that for every comment or message we type – it hurts us for hours afterwards.
So we fight on, for those who can’t even type (which is me, many days).
Be kind people!
Martha

Gail Honadle

U.S. Coast Guard offloads 26K lbs of cocaine, 1,500 lbs of marijuana in Fort Lauderdale

The cutter Hamilton was responsible for four cases, seizing approximately 1,400 pounds of marijuana and about 9,000 pounds of cocaine.
The Coast Guard Cutter Resolute (WMEC-620) was responsible for four interdictions seizing approximately 7,550 pounds of cocaine.
Her Majesty’s Canadian Ship Whitehorse with a U.S. Coast Guard law enforcement detachment aboard interdicted two suspected smuggling boats seizing more than 2,000 pounds of cocaine.
HMCS Yellowknife, also with a Coast Guard law enforcement detachment aboard, was responsible for one interdiction seizing more than 50 pounds of marijuana.
The Coast Guard Cutter Mohawk (WMEC-913) was responsible for five cases, seizing nearly 8,600 pounds of cocaine.

https://mynbc15.com/news/local/us-coast-guard-offloads-26k-lbs-of-cocaine-1500-lbs-of-marijuana-in-fort-lauderdale?fbclid=IwAR3vpBYMcXK41PazCAe8DGJ8OfpZ9LEeeIfdNdEtm9UKQqqKCwr5JUSsNUo

This is only what was caught, not what got past them. Still think it’s a Pain Prescription issues?

Alex

Hi, I’ve been a CPP and adbocate – some say trouble maker – for those with Chronic Pain
I advocate for people to get up, get going and build a life. I have CRPS, degenerative disc disease, spinal stenosis and I have detached nerve roots on my spinal chord. I also work full time as a construction manager. People hate me because I refuse to be a victim. I refuse to see myself as a victim and I refuse to relate to others in pain as victims. I went so far once as to try to buy a tpwn from the government to establish a place where CPP”s could live free of stigma. That plan died on the vine because when people found out they would have to contribute (work) at some job to help keep the town viable – they backed out.
I CAN’T is not in my vocabulary and I think that if CPP’s stopped saying I can’t more people would listen to what they have to say.
Before you start throwing rocks at me, I have full bodybstage 2 CRPS and have had for almost 20 years. I am also 70 years old and I work 50 to 60 hours a week.

Gail Honadle

Been kicked out of several Pain groups because I point out the Truth, this is a ILLICIT STREET DRUG Problem and 4 decades has not erased it. Because they won’t address the homelessness, hungry, or PAIN. Nor will they stop the Importation of Illicit Drugs smuggled into the USA. It’s been going on long before the CIA ran Black Tar Heroin out of Laos into Vietnam. HISTORY is on my side, can’t help it if people are to Stupid to READ it. CATO https://www.cato.org/publications/policy-analysis/four-decades-counting-continued-failure-war-drugs

It makes me sad to hear your story and feel like you do. I have suffered for 40 years with gastrointestinal problems, Rheumatoid Arthritis, etc, and have been abused and disrespected by so many Professionals. My goal is to educate and help erase the stigma associated with pain.

Bruce Stewart

I think it’s deeper than money. I think they actually want to kill us. Part of the UN de-population mandate that’s been going on for decades and has accelerated due to artificial intelligence. With robots being so advanced, they really DON’T need us (meaning common people) anymore. CPP’s are easy targets, the same way that Hitler got rid of the handicapped for breeding purposes. If you ever get the chance, just read the UN literature that has advanced the term “sustainability”, and you will be looking at death in the face. They want to get rid of cars, planes, electricity – and have you be dependent on solar power while their planes spray aerosols to dim the sun in order to “slow global warming”. Just look it up – geoengineering is the term they use for that. They want us gone – why do you think nobody listens to us? Common sense and compassion alone would make it easy to be heard. These people are globalists and their job is to eliminate 90% of the people on the planet. Who else would block someone who is in screaming pain and crippled? A bunch of psychopaths. Until the U.S. government quits funding the United Nations and shuts it down, we will be living in this bizarro world, opposite of reality existence forever. Hugs to you Arianne- millions of people are on your side. Believe it. It’s the globalists that aren’t. And you don’t want to be on their side anyway. Bruce

Arianne I do not hate you. I am hated too. All people with chronic pain are hated and reviled. i told my former pain doctor once that I do not know of any other medical condition that is treated so horribly than chronic pain. It is like we are public enemy number one. This former pain doctor cut my nerve blocks down from once a month to every three months. He took my pain medication from me on March 12th. I filed a grievance against him with the Physician Complaint Line on March 15th. A two day investigation turned into three weeks and at the end of it I found out that Patient Relations whom it was turned over to had tried to work with the doctor to make me look like a drug seeker. Then they tried to dismiss me and ban me from all UPMC Pain Clinics. They are trying to make it look like my pain is not real. I had fired this doctor around March 19th. and he is trying to make it look like he is still my doctor. They keep sending me pain questionaires from their clinic, I do not respond. They said “You filed things against our office!”. Yes I did ,it is my right. I was told to shut up and I refuse to do that. My voice is important and I will use it even if I am set upon by this doctors office. I am stronger than they are, I figure what else can they do to me that they have not already tried. Afraid of little old me, they better be! I may be in pain but he kept me in pain anyway. I am free from him, glory be to God. I refuse to be abused by this doctor any longer. I have no pain treatment any longer and will decide soon on weather I am going to try Kratom , I have pretty much made up my mind to do that. Keep on fighting and do not lose the heart to do that. Remember , if you are hated it is a sign you are doing something right. We are warriors, do not lay down your weapons.

Cindy I hope you find this helpful but if you would look up abbreviation for texting you will find and learn what’s abbreviations mean. Abbreviations in texting it’s just shorthand writing which has been around since there’s been secretaries. The Only Exception would be the abbreviations you mentioned. This is the new language in writing. If you have a teenager they already know the abbreviations so maybe they could help you. Best of luck

Dar

…continuing my previous post. The story seemed to conclude why something like this war against pain patients could possibly go deeper, but please be aware, this is just a theory. It was explained that certain organizations who are politically biased believe pain medications, anxiety meds, etc., are being strongheld (meaning collected) for soldiers in a war already being devised, so their pain, and anxiety-anything that would hold them back for fighting, and not being strong enough to continue without these medications, just as the present pain patients are suffering from. The theory seems to give another possible intent to this war on pain patients. It does question why these political agendas continue, and nothing makes any sense. Where are our medications? Why are they being witheld from patients who absolutely need them to function? What is happening to the structure, and effectiveness of the system? Maybe there is even more to this whole nightmare that we haven’t heard about yet. It comes down to the admission (or forced commentary to American people to buy some time), again admitting the wrong people have been violated, yet nothing changes. We keep hearing little positive feedback, but we are told we have to be nice, we have to fight-fight for our already established rights as Americans, but it should not being played out this way. It does not make sense. We are being told we are making progress, and learning how to fight for the right not to suffer in pain without being rude. I just do not understand why we have to wait. Laws have clearly been broken. We know who put this burden of organized illegal tactics of control, and induced sufferring, and death, on us, yet we do not seem to be able to fight for the rights our veterans have fought, and died for. We are already protected from injustice, at least if we believe in the constitution of the USA. It is time for the games, the manipulation, and control, to stop. We can’t. ‘be nice’. We can be angry.

Dar

I heard a very interesting story that will not directly relate to this post, but I want to share it because it raises some issues not regularly talked about, yet I believe it does raise some scary issues. I am not a conspiracy-minded person, however we live in a world that raises questions nobody seems to understand, or answer, so I want to share it others, not meaning to change the subject of this war on pain patients, or start another conspiracy. I think we should all try to read between the lines, because this whole subject is so dry-we seem to be making progress seeking aproval and be treated with respect, for the debiliating pain, yet nothing really makes sense, even when the truth that the wrong people-pain patients, were targeted by mistake? Our rights have been violated, as admitted publicly ( they had to admit it sense it was clearly executed with numbers and politics, etc.). So, okay , if it has already been dictated, and clarified, to a point, why is nothing changing? They just get to admit it was a mistake, and we know laws have been broken, but nobody is being held accountable. The extent ot sufferage, and death, has not been publicly reported, and clarified, so things change, immediately. The evidence is clear, civil rights have been violated, and (I am going to continue this comment in a new post, because I don’t have enough space to finish the comment I started). If you want to hear more of the outrageous story about this war against people in pain, and the theory told to me, just as that-a theory, but very interesting …

Lisa M Howard

Just the other day I was experiencing a tingling sensation in my face, unsure if I was having a stroke I went to the ER in my area. Once admitted the nurse verified all my medications which includes Oxycodone for pain. Another nurse came in degrading me bc I was on pain meds…what she considered a high dose…Now I’ve been responsibly taking this same medication since 2014. Having been diagnosed with spinal arthritis, hip arthritis, knee and shoulder arthritis. According to this nurse I’m an addict…she never discussed my being diagnosed as having a TIA, her gripe was that ppl who take the dosage that I do are drug dealing addicts. This is how I was recently treated at a well respected hospital in my area by an out of control nurse who apparently has issues with me being on pain medication, saying also that she’s seen my MRI’s and there not that bad…Enough is Enough I’m so tired of being humiliated and degraded just bc I’m in constant pain and need to take a medication that gives me some relief. Someone PLEASE help us!!!

Karen Sherer

You are right. We support you unequivocally. Much love, pain sister.

Stacie Wagner

I’m sorry that you feel alone in being hated. I feel hated but I also feel like I have the cloak of undercover CPP that has fooled the medical community for years, MRIs, CT scans, x-rays, lab tests (sarcasam implied). I am sick and tired. I am exhausted from all of the doubt heaped upon me. Tired of counting meds, taking pictures of meds to send to my doctor’s, drug tests and the constant battle to get my meds on time and have them be correct. I do not need meds for my recreation I need them so I don’t blow my head off! I am no longer allowed to take meds for my severe anxiety and panic attacks and depression is just the normal life I have. I am sick of pain at an 8 or above and I’m also sick of defining my pain with a number, instead I want a pain scale that includes ‘ I feel like predator is ripping my spine out of my back right now!’ how’s that for a pain level?
Okay sorry about the rant I feel alone 😔 I also don’t understand why a CPP is being attacked by other CPP? What is wrong with us? Don’t we all have enough to deal with and now we’re attacking one of our own? Knock it off people! We have bigger issues! Me I’m trying to stay alive. It’s an uphill battle but I’m trying. So please include others that can fight for us, include those that want to fight for us and stop the petty bs! Try to act like a grown ass person and try to be nice!
Now I have other things to do but to Arianna Grand Gassaway thank you for sharing your story and thank you for advocating on behalf of all CPP everywhere. You and your efforts are appreciated!

Susan

When i first tried to get ssdi i was told by my pediatric physician, the only advice he would give me, is that NO ONE COULD EVER KNOW HOW MUCH PAIN I AM IN. THAT WAS 40 YEARS AGO. WELL I DIDNT GET IT ON PAIN, although I am sure that played a role. I cant reveal the truth on line as i am fighting for my pain again. I smoked cannabis for 30 years. Then my husband and PCP got together and wanted me to quit. I did no big deal. Thats when i had to start opioids. I dont like this form of pain control. Ive tried the cannabis oil, but is nauseating. I hope everyone of the people against cannabis is going to live half the life ive lived since the age of 3yrs old. Good luck with their pain control. The opioids are the best pain control out their and their greed is taking away our ability to live a halfway decent life or whats left of it. I will be 72 this year. And the last 25yrs have been the most excruciating of my life. Take a bow all you healthy, rich, power rangers for taking the rest of my life a living HELL.

JJW

Perhaps your frustration and anger towards being treated like a junkie is oozing out in conversations, and those who don’t have to deal with such things don’t want to be reminded of their privilege. People who are in majority groups are famous for reacting this way, for example, many white people not only lack empathy for the struggles blacks and other minority races face, they become highly agitated if asked to even consider differences in the way they are treated in comparison to minority races. Another example is heterosexuals who are gettin agitated because homosexuals want the same rights they have. Some even want to hold straight pride parades, failing to see or accept that being heterosexual grants them privilege that gay people don’t have. Many folks don’t want to be reminded of this, even if indirectly. It’s probably some weird coping mechanism involving shame or something, but regardless, it’s very painful for those on the receiving end of the angry or annoyed privileged.

Loved your article. I agree with you totally. I believe most intractable pain people do understand what you’re saying & probably feel the same way. I’m also a very direct speaker & I have tried to help but there is something behind all this that those that seem their helping it’s mostly for their benefit not chronic pain people. I don’t believe we have a say-so whatsoever. I agree with you on the Civil Rights issue the only thing they haven’t done to us is put an ankle bracelet on us. We are tracked as if we’re the most wanted criminal or pedophile. Not bc the color of our skin but bc we feel pain & need medication. Yet they let in undocumented immigrants in the United States & lose track of them. But also they can get medical care even when Americans can’t get it. Allowed to have social security benefits that they didn’t work for that Americans did. How screwed up is our system? I’m not against immigrants moving here but they shouldn’t have free access immediately to what Americans have work for but can’t get themselves. I’m not a hater but what about fairness. There are gangs out there & they don’t have them track down & on some list , having them do urine test. They will just get whatever they need from the streets & they won’t be tracked but the individuals that go see doctors & follow the rules they are tracked an treated like criminals. I am not a criminal. It seems to me if you want privacy it would be easier just to go to the streets then to put up with invasion of your privacy. My point is criminals have more freedom then the chronic pain person. We’re subjected to come in as if we committed a crime and you are urine tests and tracked on a database. It’s just B.S. They haven’t solved the overdoses or the illegal drugs but they’re bullying, mistreating chronic pain people.

Heidi, Seattle WA

Arianne, I hope to give you some hope here. I am an advocate/caregiver for my CPP husband. I do not physically experience his pain, but I surely do feel it empathaticly, each & every day.
Personally, I follow orgs & patient accounts, read & research, all to help me help my husband. I occasionally respond to same if I feel I have something worthwhile to contribute, but otherwise I just absorb.
I cannot agree more with everything you said here! What nonsense to argue, belittle, then block, when it is so important for all CPP voices, and their advocates, to come together to try to make a difference in the lives of all people affected by this opioid hysteria. The more voices, ideas, the better! Especially if someone is offended or ‘triggered’ by what someone else has said. Blocking those voices is not at all helpful. Our society has been built on the freedom to speak our minds, and this freedom is even more important now to righting the wrongs done to the chronic pain community.
Get your sh#t together people! Quit being such pansy-a*s snowflakes! Speak up, speak loud, and speak your mind! Our CPP’s need all our voices, regardless of the language, to be on the same wavelength.
CPP’S need access to all medications, treatments, anything at all, that relieves their pain to a tolerable level, and that gives them some functionality and quality of life.
That is, in my humble opinion, the gist of the problem we all face. Anything else is bullsh*t!
Heidi Henley

Mary DeVoll

NO. Will share my on story once I am able to process it myself.

Several years ago, I was bullied for promoting awareness for chronic pain on fibromyalgia awareness day. I cut myself off from people who I had known for years that day. I get it. Don’t ever doubt that you are doing the exact right thing. Keep talking. Keep your voice in the mix. Shout from the rooftops what others are too afraid to say much less hear. Maybe one days, the voices of the chronic pain community will be louder than the haters pointing accusatory fingers at us.

Walter Strickland

It’s me again, since our Anointed members of the CDC have decided they know what we need to get through our long days of constant and terrible pain as our doctors are afraid to prescribe the proper amount of medications we need, I use a 50-50 plan with the small amount ofmedications need to get me through the day and have a more normal life without so much crippling pain.One day I have to take 2 days of the medications to have a more normal day.Bad side is the next day I cannot take any medications for the knowing and relentless pain , so I have to wrap up in heating blankets all day and miss work , this will probably coat me my job eventually, but so far the people I work for have been very I I helpful in this regars.i would like for us to all know what state and or states they are licensed to practice medicine in and especially in the feild of chronic pain conditions that need to be treated.Since they seem to be too stupid to know the real culprits causing this ” opiod crisis” or as I truly believe is that they know it is just like “gun control” issue, they are not able to stop the real bad people so these animals go after the law abiding CPP’s and the law abiding good doctors as they are easier to control and the big plus for the CDC animals is they can make their numbers look great when , in true fact they are not stopping the real harm. It are causing extreme harm to all who truly need these good doctors and the medications they use to be able to prescribe to the Chronic Pain Patients who need and use these medications the way they are intended to be used.So my advise is to these self proclaimed protectors ofsick people, to these animals get off of your self admiring rides And start doing your jobs the way they should be done.Id you are not man enough and or woman enough to do this resign and let get good people in this position who are strong enough to do the job the right way.And as far as the DEA goes, what are they thinki and how can they sleep at night?

Never stop being you, never stop speaking your truth, never stop standing up for yourself, never stop believing in yourself and for all that you do for our CP community. Thank you being you!

Jeanette French

I for one am for any advocate we can get at this point, to many people are still in plain and I don’t see alot of change happening and I agree that the opioid crisis is making alot of people alot of money, I do not think they really care if your son or daughter is addicted or not. They totally target the wrong people and the over dose deaths continue to rise. As far as fighting a drug war, all they have to do , if they really want it to stop, is follow Portugal and Canada’s drug policies and it would be done with. So much money goes into bribes, kickbacks to border patrols, law enforcement, especially in other countries where the laws are not enforced that stopping the drugs into this country is not a goal we are going to get to. Our gov. has deals in place with drug lords, and that is why we continue to guard the poppy fields in Afghanistan, so we can control which drug lord gets the drugs and the ones we want get their money. It is so involved that the only solution is to follow Portugal, but you are right, they only want it to look like they are doing something so it is really easy to target pain patients, drug companies(who will be making billions off new drugs) , and drug rehab is very expensive, so only the wealthy can afford it.The pain task force form what I can see has done little to stop our pain, sadly we had such high hopes for it, and it has done nothing to stop the doc from fearing losing their license’s and pharmacies from filling and blacklisting docs. We have so much farther to go, so I for now want all advocates to realize we are not there yet. Keep fighting and keep the hope. We are a collective voice and we demand to be heard !

Jan

I love you! Ignore the haters, it’s a sign of the times. DO NOT EVER GIVE UP YOUR VOICE—WE NEED YOU! I TOO HAVE BEEN BLOCKED BECAUSE I TELL THE TRUTH AND SOME PEOPLE CAN’T DEAL WITH THAT OR THEY THINK YOU’RE A CONSPIRACY THEORIST! I know the feeling. After I spend a lot of effort and time to comment, it never appears. And I never swear—not that you’re not entitled to if you feel like it.
I’ve found out that you cannot criticize anyone in the Pain Advocacy Associations, even if you do it nicely in the effort to make a point they may have missed, in particular the staff who are friends of some who head up certain Pain Advocacy Groups. Folks are very touchy. I do an extensive amount of reading, but because I’m in so much pain and take a very high dose of Fentanyl, it affects my memory sometimes and I’m unable to list my sources for my comments. I have huge folders of pain articles and also read things like a book that tells the history of the DEA (how it was formed and why it is one of the darkest agencies in our federal government).
There are forces at work to destroy this nation’s constitution and flip us into socialism/communism, and you are seeing it now in both parties government control of healthcare. This is too scary for people to come to grips with, so you and a lot of the rest of us will continue to be blocked! Stay strong and courageous and continue to speak out—-some will listen!

Michelle

Keep up the fight, I wish I had it in me. I know a few things that I suspect can prove that the government intentionally did not include in their numbers and falsely claim rates if increase because I worked in pharmacy and saw it all happen . They are not telling the entire truth.

Barbara Snow

Well I couldn’t agree more. I don’t hate you. I think your spot on. Hell these people in Washington won’t even read the Mueller report. I’m not foolish enough to think they’re going to read the HHS report. Plus I live in a Republican state, they really don’t care about us or anyone they deem worthless. They just as soon see us all dead. So we will not be a burden to the state dollars any longer. I stand with you.

Gary Raymond

You are not the most hated pain patient in America, Arianne. You are the prey in an insane witch hunt. The war on illegal drugs has been futile. The authorities have turned their weapons on the chronically ill to justify their existence in a budget. Effective pain management is now a crime. Four years ago lived a productive life with hope. I have lived in despair since.

I could never hate a C.P.P. because I too have been hated but,by Dr.s who are supposed to be specialist for C.P.P.’s. But, they’re in it for the MONEY not their patients. Not one single so called PAIN CARE SPECIALIST HAVE EVEN LISTENED TO ME LET ALONE LOOK AT MY M.R.I.’S AND IGNORE ALL MY OTHER HEALTH CONDITIONS WHICH IS ALOT.
So I totally understand where she’s coming from. I applaud her bravery for speaking out against this blatant DISCRIMINATION which is cruel and inhuman treatment from people who have no idea what it’s truly like to suffer in CHRONIC PAIN 24/7/365. WE ARE NOT DRUG ADDICTS NOR DO WE ABUSE THEM. I’VE ALWAYS LOCKED THEM UP TO KEEP THEM SAFE AND AWAY FROM THOSE THAT WOULD SELL OR ABUSE THEM. THEY ARE THE ADDICTS NOT US C.P.P.’S.B
MY HEART GOES OUT TO ALL C.P.P.’S. GOD BLESS YOU WITH ANGELS TO HELP YOU GET THROUGH ANOTHER DAY 💖

Kathleen Kaiser

I find this article both intriguing and informative. Like her I have been battling for years for the right to take opioids. I’m always surprised when I read a comment in a support group from someone saying something to the effect of “we need to do something about this” referring to the opiate crisis. I wonder when they woke up, was it just yesterday! I personally only belong to two advocacy groups and I feel they’re constantly doing good and one always responds in a timely manner. You are obviously well-read and well-educated so there really should be no reason for you to use a curse word when voicing your opinion in a support group. Using a curse word dumbs down the whole comment. Use your words!

Karen C.

Arianne I don’t hate you, in fact I believe what you’re doing is not only amazing but very much needed! Keep up the good fight sistah and know that this RSD/CRPS patient is in your corner.

David Kilby

Arianne is an amazing lady. I have witnessed the crap she gets on Twitter. It is a shame.

Cindy

Until just now, I’d never heard of this author, and so I can’t make an informed an opinion.

However, I don’t appreciate, and can’t understand, the huge use by her, and by other authors here, of so many abbreviations.

Not everyone knows what they mean.

I only discovered pain advocacy groups when my forced taper went into effect last fall. My pain manager was vague about what gov’t agency etc was pressuring him, and so I got online and learned about the CDC Guideline, and found this NPR website and the US Pain Foundation website.

Not everyone reading these articles has long experience with knowledge of abbreviations, etc.

The only abbreviation I’m sure about is that OD means overdose.
I infer that CPP means chronic pain patient; there is no definition on Google.
I successfully googled SUD and PDMP .

But having to leave articles multiple times to google abbreviations that may or may not be there is not a good way to keep readers’ interest.

If you want your readers to understand what you are writing, then using abbreviations with not even one explanation with the first usage is not a good idea.

Having said that, I appreciate anyone who is willing to advocate for us, especially a CPP herself since so many of us are too weak to do anything.

As a CPP, I can barely get thru each day. Even the basics — like showering and eating one decent meal — often dont’ get done. I’ve been this way for the last decade, and much worse since my forced taper began last fall.

So, I’m totally amazed that any pain patient has the physical and mental ability to advocate. And grateful.

I dont’ know all the problems that this author has had with other advocates, but since we all are on the same side, it would be great if they could work them out.

Walter Strickland

Amen Arianne.If you don’t ruffle a few feathers along the way , pretty much shows you don’t stand your ground much.Keep up the good fight.Dont waiver ,don’t flench, just keep going forward!!!

Billie McCurdy

Please continue to fight for those of us that do not know how. Without CPP fighting for us we will lose the battle. I would give anything if I had the knowledge and the strength to help. 5 years ago I would have been able to join the fight, but when they take all your meds away it’s hard to remember what day it is much less be an advocate for others.
To all those who are advocating for all of us CPP’s THANK YOU
From the bottom of my heart. May God give you all strength to continue the fight.

Tabatha

You keep doing what you’re doing! Stand strong! Bring on the awareness from our point of view! What’s that line? “Haters gonna hate”?
I’ve been a CCP for almost 17 years and was a NICU nurse for 14. This “opioid crisis” and the way the government is handling it is ridiculous! I’ve been fighting with insurance companies, big pharma, and the judgements of who knows how many people! I’m tired. I’m tired of doing the jobs/for work of the dr offices and insurance companies. Tired of the government and insurance dictating what can be done for my pain when they have no idea what it’s like to live in my body or the body of anyone in chronic pain! Most of the period “in charge” of my health care have never studied medicine, taken care of patients with pain our experienced the pain we do on the daily! So you keep writing the letters, posting online, using the language and curse words of the common people! We need your voice! If you’re the most hated pain patient (which I doubt) then fine. Bring awareness in whatever way will ring the bell! People need to open their eyes and advocate for themselves and others! Right now it’s a war on opioids, what’s next?
Thank you for posting!