Advocating for Chronic pain(Did you know)?

There's been some important points brought out in another thread and I thought this was a topic that needs more attention.

We as a whole seem to be getting the worst of the deal with all the new regulations, laws, changes in our healthcare systems, and yet we have more sufferers effected by CP then diabetes?

We are constantly driving home the need to advocate for our care, do our homework, be aware of new meds, treatment, therapy, tests, and PM specialists. Know our rights to adequate care, fight to overcome the stigma and preconceived ideas that our meds leave and medical professionals exact upon us.

We spend countless hours debating what to list on medical forms, job applications and even insurance forms. We are the only medical condition bound to a contract to receive treatment and care.

Several threads on the page discuss just what to divulge and to whom and tighter control by insurance companies, health insurance no less as to dictate what meds are best in my treatment? Even refusing to cover a med thats primarily indicated for "moderate to severe "pain. Laws sneaked through without objections? Why were people not informed, why was such an important matter effecting millions not reported?

Have we found it easier as a whole to keep quiet? Not advertise our illnesses? Have we been so harshly judged and crucified in the media that it's best to not broadcast for fear of what? Loss of care? Job? Reputation? General harmony in our lives by family, friends and peers?

For centuries hypertension has been known as "The silent killer " and I believe that's outdated thinking and CP has slid into that position! I see people comment constantly about what to file their SSI/SSDI on or with and I won on Chronic Pain alone so don't understand the indecisiveness. It is what it is.

This threads just a thought provoking, information gathering kind of thing since the weekends are slow and so many threads out indicating obviously our voices are not being heard by those who have the power to change the course we're currently on.

FYI:There is a Chronic Pain Foundation,Chronic Pain Organization, a National Chronic Pain Awareness month(September) and a Chronic Pain Ribbon (purple) so we do have some advocates who try to go to bat for better care and to gain more recognition for CP sufferers. Unfortunately their numbers are few in comparison to the count of CPers which brings me to the reason for inquiring here how each of us feels about the topic.

Hope everyone has a great weekend and hope someone found this at least thought provoking!

I did a tiny bit of searching but failed to find any organization doing any watchdogging of agencies, regulations and such that are constantly making it harder for CPers to get effective care.

I'm old and retired and since I can't talk with family and friends about pain, I might as well speak up about proposed changes that will make it worse for us. How do I find information? We need to be heard before these changes take effect, not whine in the aftermath.

For example:

What happens to us when our hospital installs "hospitalists" who take care of us while we are in the hospital instead of our regular doctors?

Insurance companies are pushing hospitals, notably the ones they own, and doctors who have sold their groups to the hospitals into "accountable care organizations" which seems to me to be another way to split the payments. I want my doctors to take care of me, not to take orders from an insurance company that's hiring more administrators to run this program.

I see notices on the web about action taken, but nowhere any comments from patients. Our premiums go up and our access to treatment and medications goes down.

Last week I had to refuse a medication prescribed by my doctor because it wasn't covered and a generic alternative because cost is too high. My substitute neurosurgeon sent me away for more PT which hasn't helped in a year, and no followup appointment. I'll be asking my pain doc for an increase in medication for which insurance pays nothing.

When I was refused for Disability there was a sentence that went something like, "Your claim for Disability based on chronic pain, chronic muscles spasms and chronic nausea has been rejected."

When I was approved later on Reconsideration it was basically the exact same sentence with one odd addition, "Your claim for Disability based on chronic pain, chronic muscle spasms, chronic nausea and swollen ankles has been accepted."

Cspine that's a great idea and I would start with country star Wade Hayes since having colon cancer in 2012 he has become a voice for the pain no one sees. I unfortunately have not danced in decades nor can I sing but I will certainly help in any way other then those.