Archive | May, 2012

Pain Advocacy Passion Reignited: A Renewed Dedication Chronic Pain Education & Awareness

30 May

by Heather Grace


It’s been a trying month, overall… My 84-year-old grandfather died unexpectedly. The chaos has woven through my life since… It’s times like this when you soldier through a large degree of chronic pain/chronic illness. You push yourself. You just… do. And pay the price later.

Sadly, just 3 days later, the American Pain Foundation announced it had finally succumbed to the financial crisis that had plagued it for several years. The nonprofit abruptly closed shop, effective immediately. 

Apparently, the decision was made by APF’s board on the 3rd. However, this decision was announced to the majority of staff, advocates & the public all at once, on May 8th, with no warning. All resources were pulled from the web, including the Facebook advocacy pages run by volunteer advocates. It was a very jarring, unexpected hit to the advocates, and to the world of pain advocacy–in one fell swoop.


These incidents were a huge shock to my already weary system. I’ve been dealing with a health backslide for seven months now. In October, without warning I began to get sicker. It started with a seemingly innocuous sinus infection, and I have yet to rebound from whatever this is. Still. 

I now know that in addition to Central Pain Syndrome I’ve lived with for many years, something else is going on, and has been for some time. My doctor once mentioned that I had some symptoms that were autoimmune in nature. But until I was knocked on my butt, I didn’t pursue it further.

CPS is already a decently cruel illness, characterized severe CONSTANT pain, and nerves that freak out left and right, at random… A leg feels like its on fire one moment. An arm has bees stinging inside it the next. Zaps of lightning spark down my spine. I can’t feel the ambient temperature or even the temp of water on bad days. Sometimes the mere touch of scratchy material against my skin causes immense pain. Those symptoms were chaotic enough.

Who would ever expect someone with Central Pain to have another illness, as well?! Well, I do. It may be Lupus, or maybe not. I’m still in the testing phase and should probably see a rheumatologist next. But these 7 months have already cost me immeasurably: in ability to do things for myself, in a sense of well-being that one gets from having a status quo… even if that status quo sucks compares to “normal” people. Most of all, being more sick than usual has cost me financially. The cushion I once had has been eaten up by this unexpected increase in illness, plus my total inability to work.


Through all of this, I find myself reaching that “sick of being sick” feeling so much quicker this time around. I am on the verge of a new beginning. It’s overdue, really. My life shouldn’t consist of fear, anger and a holding pattern… waiting and hoping to feel better. For a long time to come, I will deeply miss my grandfather & The American Pain Foundation as well. *Both* were family, to me. But, people find a way to carry on–they just do. Loss is a part of life. 

For me, starting fresh means adjusting to the hand I’ve been dealt for the moment, and making the best of the cards that are in front of me. Not trying to peek at the next card in the deck, not guessing what that card may be. Just living in the present, with these cards. Now. Today.

I already know my future is uncertain. That is what CPS is like. I am also one of the few with this degree of illness that lives alone. It’s a tough life I lead, to be sure. But do I have to focus on how tough it is with so much intensity? Even though there’s nothing I can do about my uncertain future, there is one thing I can change… ME. 

My first inclination has often been to panic. I worried, even when things were good. Somehow, they never seemed good enough for me to relax. But now, I need to improve my reaction toward change. If I don’t, it’ll cost me dearly. 

And the reality is, I’ve HAD IT with the stages of grief over this recent health curve ball. First, there was denial–I told myself it was “just a difficult-to-treat sinus infection.” I kept saying that for 3+ months, even when unrelated symptoms appeared. Then, there was anger–oh yeah–and lots of it. That’s one thing I do very well. And yes, there was even bargaining: “I will eat better, rest more…” 

None of it helped. It rarely if ever does. So finally, I got to acceptance. And I realized, I don’t have to LIKE IT to accept it. I will accept what is, but I will also do something healthy about it, from now on. I’ve found my way through the 4 stages of grief, but now I choose to move on to a 5th step that seems appropriate, especially due to recent events…


Since the loss of the APF, I admit I’ve been a little lost. To me, it was not just any nonprofit, it was mentors and vital information, as well as a caring group of people who ensured important information reached people all over the country. We, as advocates, combated bad information with the most powerful weapon of all: truth. 

Even though I am not sure exactly what my advocacy work will look like down the road, I will just keep sharing. I will tell my story til my dying breath. It is who I am and who I want to be, even if my definition of advocacy means giving a few minutes of myself here and there. I will do what I can, when I can. Because it matters deeply to me.

When you’re up to your elbows in grief and sadness, it’s easy to forget the things that matter most. Though I may not have a lot to work with in the hand I’ve been dealt, I know that advocacy is my trump card. It helps me make sense of the game, even when the rules seem to change midstream.

That’s a reality of life with chronic pain and chronic illness. The rules are always changing. That’s why each good day is precious, as are good moments on the worst days. I could continue to cry, scream, worry or even pout. All that does is stack the deck against me. Don’t convince yourself you are too sick to… Or you can’t…

Because guess what? Whatever you believe you are capable of is *exactly* what will be. If you believe you can make small strides, you can keep going in spite of illness, you will. 

When I realized that life carried on, sick or not, it woke me up. I finally saw reality, and it wasn’t pretty… You don’t have to live life-time ticks by whether you do, or you don’t. 

So the choice is yours… You can sit there & wait for a better hand. But, it may never come. If you don’t find a way to be ok with today, and start living life now, you are the one who misses out on a better tomorrow.

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:· ·

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.


The End of American Pain Foundation–A New Beginning for Pain Advocacy

10 May

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
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:· ·

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

The American Pain Foundation Closes…

9 May

Posted on the American Pain Foundation web site on Tuesday, May 9, 2012:

With deep regret and heavy hearts, we sadly inform you that due to irreparable economic circumstances, APF must cease to exist, effective immediately. On May 3, 2012, the Board of Directors formally voted to dissolve the organization.

The Board and staff have worked tirelessly over many months to address a significant gap between available financial resources and funds needed to remain operational. Unfortunately, the economic situation has not changed in any meaningful way, despite our best efforts.

APF hopes to be able to transfer content from various information, education, and support programs to other organizations so that you may continue to benefit from the value these programs have provided to thousands of individuals and families across the country.

Your personal experiences in living with pain and seeking compassion, empathy and medical care – often against the odds — have driven our efforts over these many years. This includes enactment of key provisions of the National Pain Care Policy Act in the Health Reform Bill that led to a landmark report issued in 2011 by the Institutes of Medicine. This report documents the shocking numbers of US citizens that live with pain and calls for immediate changes to address gaps in care. Despite this, the current climate towards improving the plight of people with pain in the US continues to be precarious and hostile.

As you unfortunately know, the need for public outcry around the needs of Americans struggling with pain conditions is greater today than ever before in light of the multi-front assault occurring daily on our right to dignified care. Misguided state and federal policies are impeding access to appropriate and reasonable medical care for people struggling with pain, and deterring even the most compassionate medical providers from treating anyone with pain conditions.

It is therefore critical that each of you raise your voices singularly and together to demand the care you deserve. It is only by continuing to demand attention to the ever-worsening barriers and unacceptable suffering that change will occur.

Elected officials, policy makers, and the media need to keep hearing from each and every one of you so they are not allowed to walk away from the consequences of this over-looked public health and medical problem. Please know that although APF will cease to exist, the resolve and commitment among individuals on the Board and staff remain strong.

%d bloggers like this: