Everyone that is paying attention, clearly sees that the chronic pain community has little unity. In the future I am no longer going to talk about the chronic pain people… we have a very large “community of pts” dealing with subjective diseases which encompasses – (pain, depression, anxiety, ADD/ADHD, and an array of mental health issues)
One thing that subjective disease have in common is that there is really no diagnosed tests that will confirm the existence of the disease. Most pts are determined to have a disease purely from symptoms.
Perhaps it is time that all those with subjective diseases to come together under one VERY LARGE TENT.
I have created what I have faulted others for doing… I have created a new Face Book page
https://www.facebook.com/subjectivediseasecommunity
They claim that there is 100+ million chronic pain pts … how many more millions of pts dealing with subjective diseases could find a common goal under this big tent.
Abt 85% of Congress is up for re-election in abt 7 months… The ENTIRE HOUSE and 33-34 Senators. The number of votes by those with subjective diseases could control who is elected – or thrown out of any office – that is up for re-election from cities, counties, states, federally. This community has the ability to dump our ingrained TWO PARTY POLITICAL SYSTEM. Many other countries are not “locked” into a two party system why are we ?
Should many of the thousand odd chronic pain FB pages be deleted and/or “go dark” and point to our community tent ?
This is not MY PROJECT … it is a project that will grow and make a significant impact for those who are dealing with subjective diseases.. if those with subjective work together and take the reigns and create a movement that can neither be ignored nor pushed aside. If those who are part of this community, cannot find the will to cooperate with each other and get things accomplished then it will fail. If the community allows one person to become a self appointed “king”, “queen” or “dictator” of the community the community will quietly fall apart.
I welcome input
Filed under: General Problems
Steve, I really do appreciate your efforts in attempting to bring the chronic pain community together, and I am considering “signing up” for your new web site. But, I don’t understand how this new web site will work, or how it is to be different that all the other web sites out there where the cpp community gathers and discusses their pained lives, the injustice done to them, and the reduction/loss of their opioid medications.
You stated, “it is a project that will grow and make a significant impact for those who are dealing with subjective diseases.. if those with subjective work together and take the reigns and create a movement that can neither be ignored nor pushed aside. If those who are part of this community, cannot find the will to cooperate with each other and get things accomplished then it will fail. If the community allows one person to become a self appointed “king”, “queen” or “dictator” of the community the community will quietly fall apart.”
I don’t think that this new “subjective disease” community can “work together and take the reigns and create a movement” without an individual or group of individuals to organize them and direct their efforts. Yet, you state that if such an individual is allowed to exist (i.e., a “king” or “Queen”) then the community will fall apart.
Assuming that we do need a leader, or a group of “leaders” to direct our efforts/actions how do you envision we do this. Have people volunteer their efforts and then hold an “election” to decide who leads, or who is in the “group” that will lead us?
To start with, the new “subjective disease” members will be very unorganized in fighting against the draconian measures the government has subjected the cpp community to. It will take time to make this new group into a “fighting force” and put together a plan of action. As I think of that, I look “over my shoulder” and I see the CIAAG “group” already organized with a mission statement, and an updated web page listing all kinds of contact information (state by state), and other resources to be used by cpp members. They also have organized to the point where they have state by state ambassadors. So, I find myself asking how this new FaceBook page will mesh with organizations such as CIAAG? In fact, why are we not throwing/encouraging support of organizations such as CIAAG rather than opening another Facebook page?
Maybe, I am not understanding exactly what the definition is of a “subjective disease”. I have a painful nerve disease. Your term, to me, implies that my disease/pain is subjective (as in, “all in my head”). I know that is probably not your intent, but it was my first thought in reading the terminology.
So, this comment is just me thinking out loud. Please consider my input if/as you deem appropriate. Pardon any typos as I am typing this in pain.
Thanks,
Wayne
IMO any illness that warrants the use of “controlled substance” medication is always looked at like the patient wants to “get high.” My 24 year old son who has severe ADD. His primary will prescribe Vyvanse (extended release stimulant), but he’s not crazy about doing that. Even worse, the Vyvanse works great for about 5 hours, but it’s supposed to work for 12 hours (we all know the 12 hour crap doesn’t work 12 hours), so he needs an instant release for the afternoon. Yeah, good luck! When the Vyvanse starts wearing off, it makes him really sleepy. It interferes BIG TIME with his job. He really struggles. He’s tried about every non-cs meds and they don’t work for him. For someone without ADD/ADHD, a stimulant would make them bounce off the walls. For my son, it relaxes his mind so that he can focus. I’m a member of a ADD/ADHD group and know there are others who have issues trying to get the medication they need. And I always point out that this is what so many chronic pain patients are going through. This is a great idea, Steve!
I think quite a few people are monetizing the pain movement looking to sell books and web movies. Maybe if there wasn’t any of that, it wouldn’t look the way it does.
What way does it look? I am confused. Sorry