A year or so ago another chronic painer and myself tried to start of non-profit to accumulate a “legal war chest” to fund legal challenges to denial of care of chronic pain pts. Our goal was to get about 0.1% of the chronic pain community to contribute the cost of a fast food meal ($5 – $7.50) ONE TIME.. reaching that goal would have generated millions of dollars to fund legal actions… after abt 30 days.. the fund had a total of abt $600 that had been contributed by a couple of dozen people .. including two people that contributed $100 each. In 30 days we had not even accumulated enough to pay for the legal cost of creating a non-profit… donations were refunded and the project ABANDONED…
Prior to the recent national election where 435 Representatives in the House and 34 Senators were up for re-election… I repeatedly pushed the concept to “VOTE THE BUMS OUT”.. and abt 98% of the incumbents got re-elected… so the vast majority of the chronic pain community either didn’t vote.. or voted for the incumbent… ANOTHER FAILED PROJECT….
A couple of weeks ago.. I created a concept that would take some participation of those in the chronic pain community to create a list on Twitter to be able to send tweets to all of Congress and the media with just sending out a single tweet… I asked for help creating the lists… less than a HANDFUL of chronic painers came forward with a interest in moving forward with the project. ANOTHER PROJECT THAT IS GOING TO BE DESTINED TO FAIL ?
If those in the chronic pain community does not get the attention of those who are passing laws… reinterpreting the existing laws.. that are going to continue to adversely effect those in the chronic pain community… the downhill path of pain care in this country is not going to change.
The bureaucracy is starting to acknowledge that addiction is a mental health disease, but as of yet.. they have not acknowledged that the prescribing opiates to treat pain… will not cause a person to develop the MENTAL HEALTH DISEASE of ADDICTION..
The prescribing of legal opiates peaked in 2012 and has been declining every since… all the while the number of OD’s from illegal Heroin, Fentanyl and other illegal substances have DRAMATICALLY INCREASED.
If those in the chronic pain community wants things to change.. then collectively they are going to have to get their ass in gear… there is no handful of advocates that are going to change the current course of where things are going in regards to how/when chronic pain pts are treated.
Over the last 5 yrs I have seen chronic painers and others who have tried to step up to the plate to advocate for better treatment of those with chronic pain.. for them to shortly realize that they were a solo voice or just one of a few vocal advocates and they seemingly “disappeared” from being an advocate.
There is suppose to be 100 + million chronic painers… those within the bureaucracy are not going to change their thoughts about treating chronic pain… when they only hear from a few hundred or less about the denial and abuse of chronic painers that is going on and that they are creating..
Look at it from their perspective.. if there are 100 million chronic painers and they are not hear much “noise” from that group of people.. there can’t be much of a problem to those people… if they are not SPEAKING UP.
Filed under: General Problems
Why do I even bother? I have stated, laid out and put forth HOW something like this is done and this is not how it’s done. It has to be treated like a business. That means investment money much larger than you are talking about, a plan… I”m not going to repeat it all. I’m tired, burned out long ago and one of those who disappeared. No one listened to me either. Not you, only a few. I can’t join in on something that I know won’t work. I’m sorry, but if it isn’t done on a scale that is HUGE, we can’t get rid of a problem that is HUGE. You unfairly “yell” at your own subscribers. If you want action, don’t start with us, start with a backer who has a million dollars or at least half of that. Then we can make a plan and get somewhere.
I wish i had that money,,,,we’d be sitten in-front of congress by now,,,maryw
Yes, likely past that point by now. This is a serious issue, but it’s not really taken seriously when everyone’s opinion is “right.”
Opinion or not we are being murdere’d,,7 a day,that we know of,,and thats the problem,,”opinion” ,,these government agency’s only use their opinion,,not science,,,psychology is not a feild of ,”medicine,” based on true scientific data,,,its allll based on opinions,,,and psychology opinions are what is killing us,,klondike bar is a psychiatrist,,another opinionated feild,and he’s the idiot killing us,,,I truly feel we have more then enough scientific proof to charge this guy w/intentional torture ,genocidal murder of 100 of us,,if not 1000’s,,along w/the dea,cdc,doj for abuseing the public trust,abuse of ,”just power,” derived by the govern,,violation of the Declaration of Independence,,violation of thee U.N treaty on human rights,,and sooo much more..The problem is we are allll poor,,from years of medical bills,,were physically sick,,,and no lawyer has the balls to sue the United States Government,,yet,,,jmo,,mary
I do what I can when I’m able. It’s been a constant effort just to think clearly, sit-up straight, sleep, and find some connection with anyone that is “aware” of what’s happening. For example: myself and others on disability were cut off from “snap”=foodstamps w/o warning or notice. The following day my landlord stopped by with a letter he recieved from RUPCO aka section 8 housing, stating that my rental assistance will be Terminated as of Feb 1st, 2017. The reason they gave was failure to recertify I told both foodstamps and sec 8 that I never received notice. I know I contacted important agencies when I discontinued my P.O. Box, and nothing was forwarded as well as strange things happening with the mail in general. I may be homeless on Feb, 1st, 2017. as I have no transportation, friends, and my only sibling has chronic Lyme, pain and is in a similar situation. When I asked to speak with a manager, I was given the same statement. Just staying alive, no-less getting medications has been a monthly “challenge” Trying to recieve help is nearly impossible.
You do it because you are a compassionate person doing what you can to help others. I do what I can too but I don’t even know what Twitter is so can’t help on this one. I for one thank you from the bottom of my heart!
Peace and gentle hugs to all for Christmas!
So very true Steve.
Just like Mary and other readers of your articles, we share your articles and restate the very same issues on all of our social accounts only to hear a bunch of crickets. So frustrating.
I get hollered at from chronic painers that they have no money, they haven’t the energy to help but yet want validation and to be heard.
There’s got to be some way to get to the majority of the millions who are suffering, I just haven’t found it yet.
I will never give up or quit trying to advocate for those who cannot. Since I am one of those millions who suffer daily from post-stroke pain known as Central Pain Syndrome along with some auto-immune issues, I only get 1 or 2 good hours a day so I understand what the many are experiencing and going through but I just cannot understand not wanting to help. It baffles me.
Lisa Davis Budzinski
VP of CPSFoundation
Delegate of US Pain
Ambassador for Power of Pain
Author of: At The End of The Day
I agree. I could use a lawyer. Chronic pain is serious. It should not be a dictatorship.
I speak up alllllll the time,.,,,,I forward post of yours alllll the time to my senators,to the doj,,to the cdc,,with my jmo attached,,for me,,sometimes i am just too physically ill some days,,,,soo there are those of us who dooo speak up…I plan on speaking w/my doctor about a aclu case,,but we do not see him till thee 11 th….soo,,,there are some who do speak up,,,,and they have chosen not too listen,,maryw