The Lack of Unity in Chronic Pain Advocacy

The Lack of Unity in Chronic Pain Advocacy

I have been thinking about one thing more than any other when it comes to chronic pain—-the problems so many of the advocates have with each other.

It can be nasty and often personal, and I explored the issue recently in some conversations with some chronic pain leaders to get their take—they agree there is a lot of division and no one quite knows what to do about it.

In fairness to the advocates while they often complain about and seldom work with each other, they are out there.

Many other people are not.

That’s probably why I was drawn to a recent column by Steve Ariens (aka Pharmacist Steve) who has been one of the most honest and consistent voices I’ve met since we launched the National Pain Report eight years ago.

I asked him if he was ok if we republished it.

He said—as he always does—sure.

Here it is.

Nearly every day I check “Memories” that Facebook posts on my page… and I see names of people who have “liked” my page and/or started following me… and many of the names I don’t have a clue who they are or they never interact with my FB page at all.

I see the same couple of dozen people posting on FB and I notice that many people “like” the comment but few SHARE… or I see the same person posting the same thing on multiple FB pages… Nothing makes me happier than go thru FB notices to only find the same post over and over from the same person. To “like” a comment only allows FB to collect data points on you for their database… that they are selling to anyone who wants to put up the money.

Does this suggest that we have TOO MANY Facebook pages devoted to trying to deal with pain?

Many of these groups are “CLOSED/PRIVATE” and they made a post and suggest that it be SHARED…. YOU CAN’T SHARE FROM A CLOSED GROUP!!!

One chronic painer asked me the other night if we should post something about supporting some doc that is getting drug thru the DEA swamp… and my immediate response is why aren’t the doctors financially supporting the defense of their colleagues?

It has been stated that there are some 100 million chronic pain pts and that 80% are struggling financially because of their inability to work, the other spouse took off and/or the cost of their therapy.

So does that mean that there is 20% of the chronic pain pts may have a few dollars to spare… that would be 20 million? I see on TV a lot of nonprofit groups asking for JUST $19/month for their cause… Doesn’t anyone realize just what JUST $10/month from 20 million could do for a legal defense fund?

Start hiring a PR firm, Lobbyists and law firms to get the message out that our government is actively participating in a covert genocide and suiting those healthcare corporations that are supporting this genocide.

With our ingrained TWO-PARTY SYSTEM… if the current “BUM” is voted out… his/her replace is or becomes the NEW BUM. According to this article in the Washington Post the total Federal 2016 election – all candidates was 6.5 BILLION.

There are other political parties besides Democrats and Republicans and it only takes about 65 million votes to get a person elected President… about HALF the number claimed chronic pain pts… not counting their spouses and kids old enough to vote.

IMO… the chronic pain community needs to get their act together… that includes their dollars and their votes… In the EIGHT YEARS of my blog… things have not gotten any better and, probably got a lot worse and we are near the end… because many of you are still breathing and having the healthcare system spend money on your treatments.

Get you head out of the sand and quit all the whining… bitching. and moaning…

To read more about what Steve Ariens thinks, go here.

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Authored by: Ed Coghlan

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Dee

I’ve donated to Dr Randy Lmartiniere, Robert Rose, Dr Smithers,Dr Tennant, CIAAG, Don’t Punish Pain, Josh Bloom, 8 other people who wish to remain anonymous. I usually send $20 to $25 each time. I know it isn’t much but is more than I can afford. Could someone tell me where the money would do the most good? I wonder if many of the elderly pain patients aren’t aware of Social Media, National Pain Report, Steve Ariens, Dr Tennant. Pain News Network.Doctors of Courage, Don’t Punish Pain, CIAAG I am seriously asking to find out where my contributions would do the most good. Thank you, D

Rev. Micheala Lauer

Yes, I agree w /many..We will stop complaining when we know whom to send$ to. Who in addition. Besides our State reps to write to. “We just need to know”. Our Volunteer prayer Network has been available for RSD/CRPS, Disabled, Handicapped, Aged and I’ll patients. And caregivers/family. Members since 11-9-1991. We are watching suicides multiplying and Fast. We need someone to help us organize, someone to whom has the info we need to organize and accomplish. Please add our Network to the list of those willing to help.
The RSD Patient Support Network
People helping People … Since 1991
Volunteers: We will pray w you.and for you.
FBpg/RSD Pt. Support Network
Micheala Lauer

Rev. Micheala Lauer

Rhonda Simmons

Everybody that deals with chronic pain should band together and Sue states and federal government for invading in the Dr patient confidentiality. States are allowed to sue the makers and distributors then we can sue the states and government. I’m tired of suffering due to their meddling.

Linda

To take on a legal battle when it involves a government agency, doesn’t it require an approval, by the government??? I somehow have this thought stuck in my mind, but I don’t know.

Mel Carranza

This is correct. We need legal counsel and PR. We need our families involved. People who are healthy enough to move, travel and vote.

PainFULL

So okay, I have as few bucks. What I don’t have is someone to send it to. Do YOU know someone? Because I sure don’t. If I did I probably wouldn’t be in this position. Seriously, it sounds like a good idea, one several of is have thought of. But who know lawyers willing to take on the DEA, CDC etc.? Anybody?

I gave money to a “Go Fund Me” pain advocacy group a year ago and never heard anything afterwards. I think for a commercial but what I was able to see of this commercial was a waste of money.
It was suggested to me by an attorney to contact the states law school as it would be an opportunity for the school to get free media attention. I called the school but was told I lived too far a distance away from the school for guidelines.
Try getting this suggestion out to EVERY law school.
Really who sees these advocate posts besides pain patients??????

Thomas Kidd

Does someone know how to write Trump a letter by email?

Thomas Kidd

Tell me what I need to do to start this going! I will do my diligence in anyway I can. Stop talking, and writing about it. Let’s get going.

Thomas Kidd

Thank you. Just tell me where to send support.

Point taken. Excellent idea as a matter of fact!
Steve, Ed, do you know of anyone that’s ready to take on such a major legal battle? If so please contact them and then let us know what their fee is for taking on the government. Many of us don’t have much to give but like it was said earlier, if everyone of us in The Chronic Pain Community would give five to ten dollars a piece imagine the amount of money that would generate. I’m all for it and am sure everyone else is as well!
I’ve written letters and have made phone calls to all of the government officials and offices I possibly could. They are sticking to their nasty opioid crisis and not budging one little bit so yes it’s going to take a hardcore legal battle. A couple of years ago, Robert Rose our tireless veteran took this very issue to the courts in Greenville Tennessee. Dr. Phil Roe didn’t even have the fortitude to show his face. Many have gone to the rallies, filled out endless questionnaires, gone to Washington, have given speeches, made phone calls and written letters. ALL TO NO AVAIL. We all want someone that will take this on and I’m sure if you would tell us who that person is we would all gladly give five to ten dollars to obtain their services. We whine, b**** and moan at times because other than ourselves, no one else will listen. Most of us have been deserted by our family, friends, many by their physician’s and just about everyone else. Oftentimes it seems all we have is one another. My personal opinion only but I think it’s wonderful that we have one another to talk to, even if at times that consists of moaning, whining Etc. After all and unfortunately, we can’t be happy all of the time.

ElizabethR

Money talks! It also hires people who have access and can talk to those in positions of power. I would be willing to contribute a modest monthly amount to fund hiring an attorney or lobbyist. Certainly, out of MILLIONS of patients living with pain, many could afford to contribute even if only small amounts. IMO, what we need is a high-profile and/or well-connected spokesperson who knows how “the system” works and can get our stories the wide sympathetic publicity that victims of the “opioid crisis” have enjoyed. That person might be a pain patient personally or have a close family member who has relied on prescribed pain medication to remain a functional and productive member of society.

Somehow the conflation of patients who need pain medication and use it responsibly with “drug addicts” must be dispelled. It has been shown over the past 2-3 years that we are NOT the same. Yet, public policy continues to toss us in the same barrel. The first task of a pain representative would be to work towards convincing the CDC/FDA and especially the DEA that the real “drug problem” is illicit heroin and fentanyl primarily smuggled from China.

American

I’m not sure if pharmacist is on the our side or the government side. Did you happen to notice what happened when the government beat down a group of innocent pain patients making them needlessly suffer in their opioid crisis? Did you think that doing the same thing they’re doing would bear a different result and do you understand the definition of this? Just before this article I read an article listing the reasons why chronic pain patients don’t have a lawsuit then I read we should have lawyers here. I don’t have social media I found it unhealthy the little bit that I did have. If I had any money I’d be at the chiropractor because I was forced tapered go to unintended consequences of CDC guidelines left chair-bound and bedridden far as I’m concerned society has all but forgotten about me but I’m here, I’m listening what next?

Alan Edwards

If there ever was a disease that needed a voice and constant media coverage it is Chronic and Intractable Pain…not to mention the myriad of causes. I notice almost every commenter on nearly every NPR article has, despite their misery, given valid rebuttal or support to the featured author.

I see little disunity among intractable life-long pain patients. We are not easily duped by an author who knows no pain.

We are fighting an enemy within our government. These are the agencies and agents ; unelected, unfettered, highly paid and out of control. Agents of the government acronyms straight out of the movie “The Matrix”.

Read all the comment section. It goes beyond Wikipedia and the propaganda the purposefully uncapitalized fda, cdc, hhs, dea and government supported pharmacies like cvs and walgreens spout every day.

We are sick. We deserve adequate, timely pain treatment. We definitely do not have our heads in the sand.

If all Intractable Pain patients were given morphine pumps using liquid or drip, most could return to work and we could again be the world leader of GNP.

Why keep us at death’s door by restricting oxycodone and morphine derivatives which actually subdue most chronic pain and restore patient healtb? Why let Kolodny win? Because most of the country has been brainwashed since 1913- many say the Un-Civil War. The powerful Pharmacist’s lobby has made pharmacists rich while I struggle to pay bills. Did you know the truly evil pharmacy lobbying group existed? Claiming to prevent iatrogenic harm to patients? That is a true oxymoron!

Many things have to change. We are headed in the wrong direction drug tsar Chris Christie. As was Woodrow Wilson.

Don Prue

I am beyond frustrated with the groveling I/we do to try and get to a ‘natural’ end to this already difficult life that I’m concerned how it will end.
As long as there are people making rules and regulations about something they have absolutely no experience with there will never be an intelligent resolution to the REAL drug problem, which is the people who need them can’t get them due to governmental intimidation.
News flash! There always was and always will be a street drug problem. It doesn’t matter what the drug is. The junkies will find a way to get it or just make a new one.
Does anyone with influence or authority in affecting control over the quality of life that I DID NOT choose, have any brains or intestinal fortitude or maybe both?!
I lived 72 years as a Christian, patriot and hard working independent American with the highest integrity only to be reduced to a frustrated person with constant pain that completely changed my life, begging incompetent people for relief.
To my Honorable Masters :
Let someone who has personal experience with the subject (ie. PAIN) regulate the treatment!
In this new world of ‘whining gets results’, I freaking whining, OK!

Replying to Cancer survivor and BarbaraDH54, BRAVO pain warriors! I like many have been tapered down on my dose of Rx pain med. Just like many I fight, speak out, in various ways from my bed. I totally agree that we can not win this “War on Pain Pts” , alone, that we must unite. I also feel that we can do so much more, many, I believe would prefer, giving $5-$20 in place of not being able to attend rallies, official meetings, etc. We need professionals, attorneys, lobbyists, political reps, advocates and Drs to help patients, etc. The folks trying to knock us back down, everytime we stand up or even trying to do away with us all together, seemingly have unlimited funds and ulterior motives of their own agenda! Without a level playing field we’ll be fighting a never ending battle until we all just drop from exhaustion or our bodies and minds are no longer able to endure the pain we’re forced to suffer daily! If I knew how to organize this and do collections, get the right ppl on the needed tasks, had the physical energy to do so I’d be on it in a heartbeat! Maybe someone reading this will get or have the same idea and start the revolution we desperately need? I’ll be the first to contribute and I’m seeing more and more willing to do the same! At least we’d be helping ourselves that would in turn be helping our providers, the ones willing to put themselves on the line to help us, anyway. I believe that alot of those docs only stay in business helping cpp bcz they have to, bills to pay, etc. There are those good souls who actually do care, how do we tell? That’s why instead of giving money to help Drs legal funds that I don’t believe will help much in the big picture, we need to help ourselves first and foremost!

Sandy M

I also unsubscribed from Facebook 3 years or so ago because it was just too much for me to handle, plus all the political garbage. All my Representatives and Senators are totally against opioids, no matter how much pain we are suffering. I’ve been thru the Alternative Therapies, been suffering for 20 years. I went thru so many injections for my back, they punctured my spine and I had to have a “Blood Patch” done. I have cognitive problems due to my hemorrhagic stroke in the thalamus and as a result, suffer from Central Pain Syndrome, for which there is no cure, along with other pain issues. And, since my medications have been cut back, I am unable to participate in much of anything. All the government agencies involved in this mess should get real doctors, and why didn’t the doctors fight back? Because they were/are threatened, then they take their license to practice away as one Doctor posted here, she was trying to help and you see what they did to her and Dr. Forest Tennant, they busted into his office. These guys running these agencies know nothing of what we are going thru, nor do they give a rat’s a** …. I do what I can, which is very little and yes, it makes my painI levels skyrocket, but I don’t sit around and feel sorry for myself! This is like Socialism, our doctors know us, but the government will not let them medicate us and they sure don’t know much about PAIN. This opioid crisis could very well be controlled. Many who have OD have taken other bad drugs or alcohol. I don’t think many of us here want to get “high”, I have no idea what that would be like, however, I would like to feel like having my family over, cleaning my house, being able to pay for my medications and bills on a limited budget each month. Those fat cats in D.C. make sure they are taken care of, they retire as millionaires or more. I know there are a few that really care, but all that has really been accomplished the last almost 3 years is fighting between parties.

I read this waiting to find out why or what is the problem with these group leaders and the divisions between the groups of pain sufferers? Either I missed it totally or it wasn’t specified. Yes, it said it seemed personal and a few other adjectives but didn’t say why, which is what we all wonder about and want to know! It hurts us all bcz everyone knows there’s more power in numbers but even as important as it is for us all to come together, it doesn’t or won’t or can’t happen, WHY NOT?

Cindy too

I totally agree with BarbaraDH54’s below post.
So many of us can barely stay clean and eat halfway decent meals.
So, how are we supposed to advocate?
Yesterday, I slept until about 11, and then again from about 3:30 to 9, and then went to bed at midnite and slept until 10:30 this morning and am still exhausted.
But I am going to get my eyes examined — a year overdue, and I”ve cancelled the appt several times already due to my pain or due to other more pressing appts. Hopefully, I’ll be able to shower before I leave, since it’s been several days since I’ve done that.

I can understand the closed FB groups, due to fear of the DEA, but, I don’t see how closed groups can do any good. People fighting for their freedom must take risks. I’m always on alert about disclosing who I am and what drugs I’m on. But, I do it anyway in letters to politicians etc. In posts here and in places like STAT, where I dont’ use my real name, the gov’t certainly could figure it out if they want to..

I’m not on social media at all. For a variety of reasons.

And, no group of any kind agrees 100% on issues or approaches, but, clearly, if they’re not talking to each other, then they can’t even begin to try to reach agreement, and that’s just dumb.

I’ve been an “official” CPP, unable to work etc, for 11 years, although I’ve suffered for decades from pain from other causes which made my life miserable. Pre-internet.

For my current pain, I never knew about this website or any of the issues surrounding opioids until my PM put me on a forced taper last year, and showed me the CDC Guidelines as his reason for doing so. After that appt, I went home and got online. Before that, even though during the last 11 years I suspected I’d feel better if I had more meds, I never questioned the fact that I couldn’t get more than I was given. I was told that any more percocet would risk liver failure.

We do need to have a movement; to form lobbying groups and fund them just like any other interest group

What do you expect, I’m sure you realize that being in pain is no fun for anybody not to mention it’s a pretty private thing so at the get go People are on edge all the time, people in pain are picked on constantly by their next door neighbor by their doctor and look at the government they’re the worst enemies of all the pain patients, look what the government has done…
So you wonder why we don’t stick together it’s pretty simple people and pain are angry and upset people don’t see their side of the coin they just Collis junkies and say deal with it but to people that say that have no clue what it’s like to be in pain constantly I’m one of them I’d love to go back to work but instead the government chooses for me to stay on a couch which I hate….
Love to hear what you gotta say I’ll be waiting for your email…..
William

Jill

I’ve read this type of article countless times on NPR. If the media and politicians created this opioid mess, both for financial gain ( read billions made in legalizing marijuana due to opiods reduction) it will take media and politicians to fix it. But why would they do that? They’ve brainwashed society, there is no longer personal accountability for drug addiction, so they are on the side of the angels in the perception of today’s society. We need a strong legal battle to get back our rights. Ed, Steve, know anyone ready to take on that fight? Cause we’re sick and in pain, barely able to survive the day. Shaming us does not work. I suggested a national billboard campaign.,Got no where. We do what we can.

Laurie

WOW! Great comments on this thread! Thank you Dr. Debbie, I sure part of your persecution was because you are a woman.
I’m also not surprised by the human beings involved in whatever pain advocacy have the knives out for each other. It really doesn’t seem that humans have evolved all that much from our more primitive ancestors; always wanting glory and to be “important”.
I have Dystonia, a genetic condition which cause my muscles to spasm on one side of my body and pulls my bones apart. Really a lot of fun for the last 30 years, I’ll tell ya.

Now, I’ve been knocked off every medication cold turkey that used to help me. The docs hear a rumor and cut me off nowadays : the diazapine rumor is going to hurt me even more. Not sure my heart can take much more abrupt withdrawals.

I saw a new neurologist yesterday and I was scared! terrified that he’d be just like my previous one who was an ignorant bully. But, OH! They think they’re gods, esp neuros.
I think he didn’t even think I needed the Botox injections. I’ve gotten them since 1992!
Hey! But I now LOOK OK, so that’s all that matters, right? At least I finally convinced him to do the EMG guided shots forcryingoutloud!
I really do think that this whole ginned up fake “crisis” was engineered by the DEA and the CIA because pot was being reconsidered for medical use. So, they had to start another drug war.
Now, the medical system is crumbling around me so that Trump’s friends and benefactors can get patents on new “medicines” and make a lot of money off our suffering.
I doubt we’ll EVER have what works back in our lives. I’m so sick of everything about this country right now. But, I think, Tramp and his merry band of criminals will be gone soon, one way or another, but the damage and corruption they’ve left will be hard to clean up…ALL of it

Donna C

Yes this is a problem Ed, and has been for a very long time. Being an advocate is about helping others. Not to make a name for yourself, not to be the first one to post, or accomplish something. It’s a selfless act of compassion for others. It’s knowing what it’s like being in the situations others are in, and living with incurable diseases that have weird symptoms, and knowing not even physicians understand what you are going through. It’s suppose to be about unity, but sadly I’ve seen some pretty bad things happen to other advocates because of jealousy.
We are all suppose to be in this fight together, and until people get the egos out of the way and really join together nothing is going to be accomplished.
It takes all of us fighting together to make change. “one voice is like a whisper, but a thousand voices together becomes a roar.”
I pray the we all can come together and make change for ALL PATIENTS!!

Judith Jermark

Physicians are cowards. Let me say that again: PHYSICIANS ARE COWARDS. First, some took money from pharmaceutical companies to prescribe opioids for pain to patients: then the FDA, DEA, CDC and others in the federal government stepped in and told them to stop prescribing or else, so they did. They yanked pain meds from their patients who needed them. Pharmacists started telling/yelling about pain meds customers in front of other customers, telling them they were drug addicts. State pharmacy licensing boards caused problems for doctors who treated patients with pain meds, and last, but certainly not least, the healthcare insurance companies quit paying for opioids. Then alternative universe treatments were proposed to patients, and money was taken from pain patients for treatments that yielded no results.

Not everyone is on Facebook. Not everyone has money to spend on advocacy. Most cannot file lawsuits against healthcare providers or pharmaceutical companies. Try and find an attorney who will take on the federal government.

Here’s a news flash I am not sure patients on meds know (not only pain meds, but others as well), doctors prescribe medications, knowing that they are manufactured in China and India, and may not have the main ingredient in them, and patients don’t get better. The pharmacists fill the prescriptions, knowing they aren’t what they should be and charge money for them, and the healthcare insurance companies pay for them. Nothing is done about that either, except the FDA may find a carcinogen or two in some of the meds every now and then and slap some hands of manufacturers.

Healthcare is in tatters. Not only have healthcare providers abandoned their pain patients, they have refused to band together and support one another. Medical societies and other healthcare organizations won’t help their healthcare providers either. None are willing to take a stand.

It’s all about money, isn’t it? Of course, it is.

Stephen Lowe

To seek a political solution when the political structure is corrupt and non-responsive is not logical. That is why there is a lack of response. Suggest reading Atlas Shrugged (written in 1957) to see how things break down. We are already there, short the civil war that inevitably follows.

People understand we have a house of cards where our institutions once stood.

JaneF

Really, so sad. I’m not a part of the facebook community, I don’t trust it. I am part of the pain community, living with CRPS. I’m frightened because of the Federal Government’s efforts to become a Maniac Dr. with no training. I’m sure so many pain patients are tired, depressed, and have basically given up. We are fearful of being identified because of people’s conceptions of opioids and identifying the pain community as users, with no understanding of chronic pain. Today is not a good day, but there are better days ahead, I pray.

I’ve been disgusted with Drs since I was a med student and resident, persecuted for treating pain, until the staff Drs started asking me how to do so because my patients were getting relief and getting better whereas theirs weren’t. I became the community pain Dr until I was falsely accused of being a drug addict and lost my license. THEN the community experienced a major explosion of ODs because I’d also be keeping the drug dealers off the street by reporting them to the drug task force. Whoops! I wasn’t around to do that anymore and nobody knew why those numbers went up. Evil acts against good people have their consequences. And Drs not standing together to INSIST patients be treated for pain has had a HORRIBLY UGLY CONSEQUENCE! Had I still been in practice, you KNOW I’d been fighting for the rights of Drs to treat pain pts but I was caring for grandkids. I was still a member of AAPM and thought they were representing the rights of pain Drs and pain patients BUT THEY WEREN’T! They fell into the trap of the alternative medicine people which TOTALLY DISGUSTED ME AND OTHER PHYSICIANS which caused their organization to collapse! WHY DIDN’T THEY STAY FOCUSED ON WHAT THEIR PURPOSE WAS? I certainly don’t know! I think they were a bunch of idiots for changing their focus and said so BUT I DIDN’T ABANDON THEM AS OTHERS DID! I hoped they’d turn around, get back their focus and move forward to fight for pain patients BUT THEY FOLDED! Thank you very much, ALTERNATIVE WACKOS!

Cindy Calhoun

I have not for the life of me understood why these groups are PRIVATE! How on earth can you get the word out if you can’t share anything from the group or have outsiders see what is actually happening to chronic pain patients. I wish the leaders of these groups would come together, and as a whole maybe we could get something done. When you are dealing with a group of people who are now too sick to work, that means most are too sick to advocate. You have to take the path of least resistance. I imagine most people would be willing to give $5.00 or $10.00 to a cause than to have to participate in rally’s which for many is impossible.

Debi Bohannan

If it’s not an ‘official’ universal law (like the law of gravity), it should be: “A house divided against itself will fall.”

BarbaraDH54

What I, personally, see happening, is that CPPs are taken off their pain meds, making many of them completely unable to function in any normal fashion, much less work. I’m 65, widowed, living alone, and on a fixed income. I have Ehlers-Danlos Syndrome (hEDS), ME/CFS, DDD, spinal stenosis, 3 herniated discs, osteoarthritis, and currently need a hip replacement. With the hEDS for me also comes POTS (postural Orthostatic tachycardia syndrome). So I’m in intractable pain, chronically exhausted, and my autonomic nervous system is dysfunctional. I can barely bathe myself, wash my hair, cook a meal, or get to doctor’s appointments. From my fixed income, I do contribute to those who are trying to fix this mess, and have contributed to GoFundMe’s for those mounting a defense. But my funds are obviously limited. Likewise I would love to attend rallies, but struggle to do the simplest tasks. My children support the cause, but they work, one being military and out of the country. There are many more like me who want to help in various ways, but are either too physically limited, severely financially limited, or often both. Many like me spend time from our beds spreading awareness by writing letters to Congress, for what little good that does. Yet we continue to do it. In short, we do what we are able to do. If I push myself beyond what my body is capable of, I will likely end up in the hospital, and that gets no one anywhere, as far as the cause goes, not to mention creating an additional financial burden.

Our government isn’t stupid. They had to have known that many of us, with no pain medication, would be rendered unable to fight back physically or financially. Those of us in this situation want desperately to help, but quite simply can’t. Shaming us for it isn’t going to change that.

Cancer#Fighter

Absolutely and start with the attitude. I had took a break from Twitter. Due to negativity. This morning over the simplest tweet a person replied “I am just going to start caring only about my pain alone & fighting for it alone” it made me sick! I have stage 4 cancer & been left in pain! Yes I would turn to marijuana illegal after suffering but with that attitude maybe they should too! I have a son 17 facing major spine surgery for scoliosis w/a 70 degree curve & a 54 degree curve that cries everyday in pain. Another son with a kidney disease. Imagine how bad my cancer pain will get. But there are soldiers who fight for this country with injuries that didn’t give up on us! And I won’t on them, my kids or others. No one ever won a war alone nor will we against this Gov’t. Pain can make you irritable don’t let it make you selfish!

Alex Stephens

I could not agree more! I used to co-chair a CPG (chronic pain group) on FB and found that other “chairs” on other sites, thought their way was the only way and that if you were on or part of another group you were an interloper and unwanted on their site. Most of these sites seem to be more about patting the “Chair” on the back for how far they have personally come dealing with their affliction OR, the issue becomes my pain is worse than you pain, my disease is more pervasive that yours, blah, blah, blah. None of which provides any real support to the community.
Coming together for all of the reasons suggested would be a wonderful thing, but first the community of chronic pain patients needs to agree on one thing…..chronic pain is chronic pain, there is no mine is worse that yours, they are all awful, they all destroy lives, and the lack of support everywhere is appalling. So GET YOUR ACT TOGETHER AND ACTUALLY DO SOMETHING RATHER THAN JUST SCREAM THAT YOU WANT TO.

Melissa Lerner

I would care to guess that the 20% who aren’t financially impacted by their disability can get their medication. Money may not buy happiness but it does buy quality health care. Simply many can’t afford to contribute because we are so in debt with health care costs. You can not survive on disability for some it’s $600-$1,300 a month more or less. $19 a month to you may not sound like much but to some that’s groceries on the table. The wealthy just don’t seem to understand the hardships. For those of us who can & are advocating We are using our own money to do this. We don’t get paid. We use our own gas to attend events, printing supplies, meeting with officials, writing letters. Yes we are a small number who have the time, money & lastly the physical ability to do this. When you are suffering in pain without medication you simply can’t function. So what needs to happen? We need the financially able who have a risk in this debate to contribute the $19 a month. Doctors, lawyers, politicians and lastly the entire psychiatric field that got so greedy they needed to push the psychiatric medicine on physically disable pain patients…AK who got us to this point.

Brian D

Sign me up ! I’ve thought the same thing since I found all these groups not helping each other, Will Steve be the Voice ? I have a ten dollar bill laying around at the end of the month I don’t use… It’s ELECTION TIME ! (always election time)
Get you head out of the sand and quit all the whining… bitching. and moaning…!!!

becky

Exactly. Write to Senator or Republican tell them you will not vote for them without addressing the CPP issue. Donate 10 dollars to the one person’s group making a difference to get a commercial in your area, Dont Punish Pain Foundation Claudia M.
When you write on numbers on the handy internet form to your Senator things will change. If they don’t do anything in their term, vote them out.
Remember all they need is 5 years for forever health care. They all want to stay for at least that.