The American Pain Foundation may have come to an end, but the advocacy efforts of APF’s Action Network will be reborn.
by Heather Grace, IPJ Staff Writer
While I by no means speak for the American Pain Foundation nor the Action Network Leaders, as a Leader myself, I *do* realize what a shock the loss of APF is to people with pain across America, and worldwide. (See APF notice regarding the closing, released May 9.) I think it’s important to note that in addition to the work that is being done to re-home the vast APF database of articles and information as was noted on the APF web site, the advocacy efforts will also continue.
Please know that there are very capable individuals working toward solutions that will ensure the vibrant pain community that existed on APF’s web site(s) is rebuilt. We, as Action Network Leaders are doing all we can to support the rebuilding efforts, as well as our ongoing advocacy projects. Behind the scenes since Tuesday the Action Network, APF’s grassroots advocacy team, have been discussing future plans. The volume of people who have stood up and asked “What can I do to help?” are a testament to the dedication of this wonderful group of advocates.
Even more importantly, we have continued speaking out for the rights of people with pain, and we will continue to do so in every possible medium. We have come together like never before and are determined to continue our work as advocates via Facebook, Twitter, blog/article and interview, to bring a promote a message that represents all people with pain. Each of the Leaders strongly believes that all people have the right to timely, appropriate and effective pain care.
While the loss of APF will be felt for some time, it does not change the dire situation for all people with pain in America nor the need for pain advocacy. Pain is a national health care crisis, a hidden epidemic, and the problem continues to worsen. This is why the Action Network was formed, and continues to grow. We are a dedicated network of volunteer advocates from over 35 U.S. states and Puerto Rico. We are people living with pain, caregivers and health care providers who work collaboratively with other advocates, professionals and organizations to transform pain care in America through grassroots advocacy.
Yes, this is a difficult time for everyone, but I hope all people impacted by pain will see this as an alarm being sounded. If you have the passion to make a difference—please do so. Join this fight. It’s time to stop believing someone else will do it–it’s your cause just as it is my cause. Please show your support via the Action Network California Facebook page. If you feel strongly about the pain advocacy movement, LEAVE A COMMENT ON THIS PAGE letting the Action Network know you are interested in advocacy. We need your help now more than ever!
With all the passion of an advocates heart,
Heather Grace
California Action Network Leader
http://www.facebook.com/APFCalifornia
Twitter: @IntractablePain
Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. Her intractable pain went from chronic to constant due to medical neglect of a serious yet treatable spinal injury. She now lives with Central Pain Syndrome and underlying illnesses. She Co-Manages Intractable Pain Patients United, has been Technical Director/Guest Speaker at For Grace’s Annual Women in Pain Conference. She is also a California Leader for the American Pain Foundation.
Additional Resources: http://www.thepainstore.com/articles.html
http://thepainstore.blog·spot.com · http://www.ippu.info
© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.
Intractable Pain Journal 
Heather, please drop me a line – I almost lost my life…4 times the last two years. This site’s interesting, and I can relate in a deep way: I have a twice shattered hip, with compound-fractured hip…and that’s 20+ years on-going. Never a problem, as the original diagnosis was intractable and complex pain syndrome. Then a car accident 2 1/2 years ago threw my life into, well pure hell: bed-bound for two years awaiting Disability…my Insurance was out of Saigon where I was semi-retired running a foundation and free language school, I was a do-gooder after 21 years in The White House Press Corps.
The accident herniated two cervical discs…which after 4 months of Physical Therapy, were declared a possible permanent disability – and I’m not buying that and am back in Physical therapy. I also had brutal screaming at The -Top-Of-My lungs acute pain spasms from my hip down my legs…the entire two years. Probably over 200…and I thought it was exasperation of my hip; nope, we discovered in February I had two herniated discs in my lumbar area….since then I have totally rested, and as long as I do not bend over or kneel…no screaming. But, once one of these sent me to the hospital for a stroke.
I must admit: I never understood what I had, or how dangerous it was until I was under-treated…then thrown out of pain management altogether: I did smoke some pot at one point, so I would eat, and so I could sleep – and that ‘thrown out’ ended up with a suicide attempt and psychotic ward for a week. That then get’s you diagnosed into other conditions, and finally I got that removed and am trying to regain what was once a fruitful and happy life. After 20+ years of being a perfect pain patient, I cannot seem to remove the stigma of drug-addict/abuser…though ironically I am not admitted to any programs they send me to, because there’s no evidence of either. The problem is when a case worker says it once…and then I have to fight for what used to be compassionate treatments.
What I need, is some help finding a pain management doctor who understands cases as complex and co-morbid as mine. I am lucky, very lucky as I have never had problems with the opioid treatments the last 2 decades…either with abuse or Tolerance: began at 10, never went over 15 mg of oxycodone. Very lucky…since the 90’s I have watched the terrible costs involving people who get a buzz…or who build tolerances. I am simply: lucky. Yet now, the first two attempts have been so harmful in that they consider me an addict as I went to the Er 3 times the 3 months I had no treatment…had to, finally I realize that things could have ended worse…like not being able to read you place here – or write you. It would do wonders, just to have someone to speak with, and perhaps the fruits of that would lead me back to a good Pain Management doctor.
One of the worst effects of not being treated properly, is losing appetite, not bathing and not sleeping. As I re-learned just how serious my condition was…I have gotten those under control, and am feeling stronger…like getting to your wonderful site. Reading what you have thoughtfully done here does offer some support, but the losing of hope is still so strong, like: is this really real? Does this gal really exist? I can lend not just chatter, I am a very experienced PR guy with sterling Press Corps contacts…so perhaps I can offer some real help – but I keep wondering: is this real? Does she exist? And the news of the pain association/whatever going down, sunk my heart a bit, as I was vaigly (sp?)familiar with them reading about the last two months. However, if you wrote me…and then we could talk, initially I need some assistance in learning how to find a good doctor…I am seeing hopefully The Johns Hopkins Blaustein Interventional Pain Treatment center…if I can get in…but after reading their application I have a strong skepticism that …well, after two bad pain management experiences, a distrust grows..and that sucks the worst – I used to virtually Love all doctors…and had great respect for them – yet being pre-judged on the last six months…without considering the long-term and then taking into account 4 un-treated herniated discs…I have a real fear more than enthusiasm whenever heading to new doctors.
As I said..it would do wonders to hear from you :~)
Respectfully yours, I am
Richard
chardbreed@gmail.com is my primary edress…. yet, sometimes it has lately been filing emails not on my contact list into a folder we cannot locate… Google’s working on it tonight, so please cc this older edress also, thanks! whitehousetv@yahoo.com
PS: I do not have a website per se, so I put one there which got the OWS folks to walk to DC! “Life is a comedy, and we are the laughs” R.E. Breed 1984
LikeLike
Wow Richard, you have for sure been thru the ringer! The thing is, people having issues with taking opioid pain medication is a misconception, When the body is wrecked, as are our bodies, the body processes it as if it was a vitamin or nutrient we were missing. Odds of any tolerance or abuse is next to nothing. Sounds strange, I know. Everything we are taught is the opposite. This “war on drugs” is killing patients — that’s the biggest fact I know and it’s NOT what everyone says!
Anyway, to find a doc is hard. I know a couple of GREAT ones in So Cal. I can also help you with research in your area if you prefer. Here’s some of the techniques I’ve used to find a doc that will REALLY help me… Tips & Secrets: How to Find a Good Pain Management Doctor: http://thepainstore.blogspot.com/2010/10/how-to-find-good-pain-doctor-tips.html. I think this entry, from my own OLDER blog, can help a lot of people. Sounds like a lot of work, for sure, but the truth is, our lives are on the line. If we can’t search ourselves because we’re too ill, then having someone help us to do the searching is the second option. It is the best we can do to ENSURE TREATMENT. It’s the only way to avoid Cardiac Adrenal Pain Syndrome (http://www.practicalpainmanagement.com/pain/other/identifica-tion-management-cardiac-adrenal-pain-syndrome) for sure…. and CAPS means death is certain!
For more great tips for patients, be sure to check out the links at the top of http://www.thepainstore.com/articles.html — these are the most helpful links I’ve found on the net for IP patients. Of course, you may have already seen 12 Web Resources Intractable Pain Patients & Their Doctors Must See: https://thepainjournal.wordpress.com/2011/04/05/12-web-resources-intractable-pain-patients-their-doctors-must-see/
I will send you an email with the doctor’s names and phone #s. You can call them, even if you aren’t in the area. Some patients even fly in for a consult… up to you. Regardless of where this leads you, I wish you all the best and am here if you need any help!
Take care, Heather 🙂
LikeLiked by 1 person
Greetings from Puerto Rico Heather! Hope you remember me – also a former APF Action Network Leader. I will greatly appreciate you keeping me informed and letting me know how can we help. We are very active here in P.R. with our support group. We’ll be celebrating our 15th year. Count me in!
Blessings!
Zulma.
LikeLiked by 1 person