Failure … let me count the ways !
Yesterday I posted the above opinion piece… and it did not make everyone happy.. I didn’t expect it to make everyone happy !
This is my FIFTH YEAR in posting on this blog and I have watched “advocates” come and go… They apparently came looking for answers and/or solutions and LEFT because they found NEITHER and realized that there is no/little unity within the chronic pain community.
Every week, I get emails, phone calls… from pts that are asking how to solve their pain medication denials from prescribers, pharmacists, insurance companies.
Often I have few suggestions that may help… because typically an individual pt has nearly ZERO POWER .. because the prescribers… pharmacists… insurance companies operate under the “GOLDEN RULE”
AND… they can do so… because the chronic pain community continues to
fail to UNITE…. and take a stand… and that
means both POLITICALLY and LEGALLY.
If there is 116 million chronic pain pts.. they have the “numbers” to basically have “THE GOLD” and be able to write the rules.
The THEORETICAL “death panels” are becoming more and more a REALITY. They are being created by the CDC, FDA, DEA, Insurance companies for starters.
No one person … no small group…. no number of Face Book … nor … dozens of petitions to the White House, Congress or anyone else is going to change the path that the bureaucracy is on. IMO… they are going to “steam roll” over those in the chronic pain community… THOUSANDS at a time… shutting down prescriber practices under the PRETENSE of a practice being a “PILL MILL”… and tossing untold thousands of pts out into the street.
Just another STATISTIC of the WAR ON DRUGS ? how many suicides goes unreported ?
Just like this practice in Seattle… 8000 chronic pain pts thrown to the curb… did anyone see about this SUICIDE outside of the Seattle, WA media market ? Was this or will this be the only SUICIDE from the actions of the DEA on this particular practice… how many more SUICIDES will happen out of this practice and will they be labeled as just an “opiate related death” ?
I am just an observer… a messenger… but there are many days that I can relate to Don Quijote…
To those in the chronic pain community.. there is no “george” that is going to come and fix it… neither is there any KNIGHT on a WHITE HORSE coming from over the horizon to SAVE YOUR ASS.
To those in the chronic pain community…if .. individually .. you don’t become a active participant in creating a solution with others in the chronic pain community… then you are part of the PROBLEM.
Filed under: General Problems
We can be disappointed with CPPs, but just look at 2016 elections when 43.9% of voters refused to perform their DUTY and privilege and vote!
Conservatives are shaming/blaming the poor, the undocumented immigrants, other races, the boomers on SS or CPPs accounting, in their atrophied brains, for the “64000 Opioid Deaths, thus :crisis”. So all who did not vote, go to hell…your silence has allowed the Talibangelicals to force a wretched agenda on me and, now with 2 right wingers in SCOTUS, we can expect them to be all up in our medical rights, especially women, right to choose, CPPs etc.
I attended the FDA webinar and will submit to Public Docket. I spend the hours I am not in agony to correct journalists, media, politicians by citing REAL studies, not Kolodney driven crap!
But the vast majority will wait for the pioneers to fight for them, and they will bitch about it every step of the way. It sucks but having spent last 7 yrs fighting for Katrina victims and BP clean up workers that are dying from the toxicity of Corexit…NIH says 170,000 of us will die within 5 yrs! Never heard about this betrayal by US FEDS? My point exactly.
I just don’t know how to get people to act. It’s hard an depressing. I wish people would write addresses on politicians they know are for taking our meds away. It would be a start.
Maybe we can start over and get it right on how to do a good job at helping ourselves. I would really like to hear from some of those people.
Please don’t give up. Doug you take a break maybe things will feel better then.
SandraG
Here is my post from last Wednesday in a very popular Facebook page.
My disappointment in the Chronic Pain Community deepens. The unwillingness to participate goes beyond the limits of being disheartening. We had one chance to organize and attack those who have openly labeled us as addicts and continually are taking our pain relief away, and we blew it. The plain and simple fact is that obviously the majority of the Chronic Pain Community put selfish political beliefs over their personal need for pain medications. I’m not talking about the presidency, I’m talking about the representitives in both houses of congress. Our one and only chance was to elect new people into congress and kick the incumbents out. You know, the ones that have been writing laws and passing bills to take all of our medications away. These congressmen and senators are the people who have been allowing the DEA and CDC to write guidelines and treat them as if they are law. Now, our choices are very limited and I’m absolutely positive that our medication access will start disappearing at an alarming rate.
You can write letters, make phone calls and even show up in person and these incumbent representitives will just blow you off. Why??? Because they have absolutely no fear of loosing their jobs. When Steve Ariens started the “VOTE THE BUMS OUT” campaign , I figured that by the response it got that the Pain Community was on board. Obviously I was wrong! It seems as though the majority of people in pain are totally satified to BITCH PISS AND MOAN about their meds being taken away. It would appear as if very few want to be a part of making the change we need. It seems as if most of you are concerned more about political party and religious beliefs more then you are concerned about your own health and wellness.
This will be my last post in these open pain groups on Facebook. I will keep my Leadership Counsil group page open for potential leaders. I will also continue to monitor and post useful information on this private page only. I will leave it up to Counsil members to share any information that I receive and post only to the Leadership Counsil page whether they want to share with open pain groups. But as far as me openly advocating for those of you who are obviously unwilling to help yourselves, I’m done! It’s time for me to be selfish and only think about myself and my pain, instead of continually putting my access to my pain medications in Jeopardy by openly advocating and being a voice for people who now appear to be satisfied with the way they are or have been treated. So, Bitch piss and moan all you want to. Talk about what you all think should be done and never do anything to get it done. Go ahead and play the victims who always use your pain as an excuse instead of using it as your driving force. Just keep refusing to use the weapons provided so you to fight back and then complain when you loose your pain relief. Trust me, I understand Steve’s frustration now.
I really thought there would be more comments on this.
Steve agreed 100%. I however decided to tackle this issue on my own behalf. I have since found a lawyer and a well known government official and even a news channel to help me. It has been a rough past year and a half but finally Progress! It’s not what you know but who you know. Cancer is a different type of matter to present than most. I just wish all legitimate responsible chronic pain suffering patients would unite the numbers would definitely be substantial. We do have 1 or 2 pain groups with good numbers. There are plans in April and hopefully this will help… Best..Carol
Carol please keep us in formed. We need all the help we can get. I wish you well.
Sandra
Maybe we could get a list of names , emails , addresses to start organizing. I’m not sure how to do this . can we get some ideas on how to try to start this. Maybe we will have to try different things to make this work. Ok Steve help me how do you think we should try to get this going. I will do all I can to help.
I so wish I could gather all the pain community together to become one united front but how is that done exactly? Especially when there are so many little groups and a few really big organizations that refuse to work together due to their own agenda. If you have any ideas on how to accomplish this, please do share them with me.