Tag Archives: advocacy

Pain Reality Day—September 9th: Vital Chronic Pain Event on Social Media

6 Feb

COMBAT MYTHS/MISCONCEPTIONS WITH YOUR CHRONIC PAIN TRUTH

By Heather Grace, IPJ Staff Writer

Speak Up! Sept 9 is #PainRealityDay

For far too long, those of us who live with chronic and intractable pain have spent a great deal of time hidden away, behind closed doors—especially when the pain becomes overwhelming. It’s time to change that! Please join us in sharing what it’s really like on a typical day of a life lived in pain.

Show the world what it’s really like to live with chronic pain by being part of the 1st Annual Pain Reality Day—YOU are invited! Join us via social media all day 9/9/15, using hashtag: #PainRealityDay. This new social media event will take place every year on September 9th as part of the annual Pain Awareness Month campaign.

It’s time to tear down the walls that have separated us from the “normal” world for far too long—to finally fight the misconceptions about pain patients with a healthy dose of truth! Are you brave enough to snap a few pics or a quick video that shows the unshowered, PJ-clad reality of one of those days when you’re just too damn sick to step outside & pretend everything’s ok?

Good! So am I! Why? The world needs to see our puffy-eyed, slightly disheveled excruitiating truth! Maybe then, people will think before they once again brazenly say: “you don’t look sick” (or whisper it, behind our backs). They need to know what it’s like to hurt so badly you can hardly breathe, much less go out into the world and brave another difficult day among the misinformed masses.

They need to know how tough it is to be seriously ill yet seen as a lazy, possibly drug-addicted pill popper. They need to feel the indignity each of us has felt, as we beg doctor after doctor to respond appropriately to our cries for help. They need to understand the anguish of losing an entire support system one person at a time when you need them most—your best friend, your mother, your significant other.

Only someone like YOU, who has suffered one unthinkable chronic pain-fueled tragedy after another, can tell the world what it’s like to slowly fade into invisibility but still be fighting to be believed. So, let’s finally say the things that must be said. Let’s unite as we open the doors to the private hell of the pain patient. We need to be heard just as much as they need to listen!

You’re invited to share each and every raw, real, enlightening truth about your pain during the inaugural Pain Reality Day, September 9th via Twitter, Facebook, your blog or the social media app of your choice. Don’t forget to include the hashtag: #PainRealityDay with each post!

Oh, and feel free to share this event with *everyone* you know who’s impacted by chronic pain: https://m.facebook.com/events/330332963834825.

All About #PainRealityDay

Show the world what it’s really like to live w/ Chronic Pain—all day 9/9/15, the 1st Annual Pain Reality Day, via the Internet. This is an advocacy event that will take place across the whole of the web—every blog, Twitter account, YouTube video and Facebook page belonging to people impacted by pain. Don’t forget to add the hashtag #PainRealityDay to each post, video or blog entry!

Who’s in? Please join us, but don’t forget to share this event with *everyone* you know who is impacted by pain patients, caregivers, health professionals, advocates, loved ones, the media! Share it via Twitter, Facebook, YouTube, etc. This day, 9/9 is for everyone who is advocating for better treatment of all pain patients. Tell everyone to visit PainReality.com for all the details!

What should you share? Any information that expresses YOUR Pain Reality… people need to understand we are just like anyone else with chronic illness invading every aspect of our lives—except that we are also persecuted for our condition. Tell them how it feels to have the people you love most suddenly not support/understand you, or worse—believe you’re lying/exaggerating our your condition. Explain how Healthcare professionals have treated you, just for wanting the help you need to get better. Tell the world how you have had to set aside your feelings/dignity far too many times as people mistreated you for being sick.

If you’re like me, you’ve lost a great deal to your illness:

  • your career/ability to work a “normal” job
  • your social circle-because you can’t just hang out with friends whenever you want
  • relationships with people you thought would be there ‘no matter what’
  • your home & any semblance of financial security
  • access to the quality of healthcare you could once afford

Express how it feels to lose a great deal of what made you you & to suddenly be dealing with your serious health issues alone. Or if you’re lucky and have family support, share how you have to meet familial obligations/expectations by pretending you’re well enough to do/be what they expect you to… often by pushing yourself/overdoing it/making yourself more ill.

How should you share? Via any social media app (Facebook, Twitter, YouTube, etc.) or your very own blog/vlog—using the hashtag #PainRealityDay. TIP: Using short video clips/vlogs, audio clips or photos are great ways to share your pain reality, in addition to text posts.

Get as personal as you feel comfortable! Remember, #PainRealityDay is about making the world see us for who we really are! So, feel free to openly share all the ways pain challenges you & has made your everyday life different than it once was—before the pain. Got a famous quote from someone who lived with pain helps express how you feel? Or a psinting from a tortured artist? Those are also great ways to express your journey!

Share as many times as you’d like on September 9th, on any social media app… So long as you use the hashtag #PainRealityDay, your story will be connected to this important event. We will be hosting/sharing everyone’s posts via PainReality.com & on this blog. Note: The site is still being worked on, so for now it’s just this introductory information that’s been posted, but more is coming very soon!

When on September 9th? #PainRealityDay is all day long, so join in whenever you are ready! We will start at 12:01am and end at 11:59pm your time. Anytime you feel up to it, throughout the day, share aspects of your world with chronic pain via #PainRealityDay!

People need to see our reality, so please join me in sharing it! YOU are invited… to share our common reality and unite with all of the people who are just like you, on 9/9. In the meantime, spread the word about September 9th — Pain Reality Day, by using the hashtag #PainRealityDay! Feel free to link to this page and to the event on Facebook, as listed above. Can’t wait to ‘see’ you all there!


About The Author

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org).

© 2011-2015 Intractable Pain Journal & Heather Grace. All rights reserved.

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2014 INTRACTABLE HERO Award Winner Doug Cook Gives His All

11 Jul

By Heather Grace, IPJ Staff Writer

Doug and Radene Marie Cook

 met Doug Cook through his wife Radene Marie Cook, a fellow patient with severe constant pain who became my best friend. Yes, Doug is her caregiver. He has helped Radene navigate the hell that is Intractable Pain since 2000. Unlike most spouses, he stayed after her injury instead of fleeing in terror. The vows they exchanged actually meant something. Though it’s truly sad, loved ones leave when someone gets seriously ill and doesn’t get better. But not Doug. For that reason alone, he is exceptional.

That’s just where the story begins, however. Doug Cook has a quiet way about him that somehow speaks volumes, the more you get to know him. I’d know him for a while before I really saw Doug in action, at the 2010 Women In Pain Conference. Though Radene & I helped put the conference together and were also speakers, Doug Cook was the one who was a huge part of the success of the event.

He arrived hours early, bringing art and other supplies. Doug backed up his SUV, unloading and arranging everything, including beautiful art that was created for the event by For Grace’s Artist in Residence, Radene Marie Cook. Afterward, he spent at least 90 minutes aiding CEO John Garrett with conference design/setup, moving the large conference tables and nearly 200 chairs, ensuring there was plenty of room for everyone to move freely through the space. Even as the event was about to begin, Doug focused on helping people get from the parking lot to the registration area. (Myself included!)

At that point, it hit me. Doug was caring for everyone–ensuring all the people who needed help got it. He continued his efforts throughout the day, helping anyone who needed it. Holding doors for people, moving chairs so that anyone with a wheelchair did not have difficulty getting where they needed to go… doing anything people needed help with.

In his quiet way, Doug has helped make the event a seemingly-effortless success. Not because he was paid to do so–in fact he has volunteered his time. Doug Cook is one of those people with a huge heart; a natural-born caregiver. This innate quality is extraordinary in today’s world, to be sure.

And the conference is just one day among the thousands where Doug gives and gives and gives. When he isn’t assisting Radene, his parents or mother-in-law–or working a full-time job–Doug dedicates a great deal of his time to helping others. He’s been active in his community for many years, doing things like painting over graffiti and ensuring the neighborhood is safe. He spends much of his free time making the world a better place, because that’s who he is.

In 2011, Doug Cook received a Shire BRAVE Award for caregivers. The BRAVE Awards are the first and only to honor the courage and dedication of non-professional caregivers, the everyday heroes who provide regular and consistent care for other people. Out of nearly 400 nominations, Doug and 14 others were honored. Read more about the annual award at http://www.shirebraveawards.com.

In addition to being an award-winning caregiver, Doug has also become a dedicated advocate and speaker. Doug spoke about caregiving at two national conferences in 2012, including the Woman In Pain Conference.

Caregiver. Advocate. Speaker. Award-Winner. Community Leader. Doug Cook is an ‘unsung hero’ that deserves to have his praises sung today and everyday.

So Doug, thank you for all the things you’ve done and continue to do–great and small, noticed or not. Read more about Doug Cook in the caregiver story by ABC News.

About The Author

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org).

© 2011-2015 Intractable Pain Journal & Heather Grace. All rights reserved.

Chronic Pain Patient In Crisis: Lifesaving Care Needed

4 Oct

READER QUESTION:

This is my first time responding to any type of blog, forum, etc. This story hit home (Surprise! We’re Chronic & Intractable Pain Patients NOT Addicts)!

You explained my life to a “T”. I can feel my body dying. I dont know where to get help. The harder I try to find a good doctor, the worse it looks. As I am writing this, tears are rolling down my face. The suffering is not only affecting me, but also my children and wonderful husband. I am crying also because there are so many of us.

Please if anyone knows how I can get help let me know. I am at the end…only enough strength left in me to try ONE more time to get help,and this is only because I love my husband and children too much to give up. I dont know what to do, and I am so frightened. — Shannon (Original Post here)


Getting Help While In Chronic Pain Crisis
Answered by Heather Grace

Shannon: First & foremost, I’m so sorry for all you’ve been through, and all you continue to go through. And, I’m so glad you took a chance & reached out! That tells me you know you deserve better than what you’ve been given. And somewhere inside you, I think you believe it is possible for things to turn around for you, too. Because *it is* – truly!

I can feel the pain & desperation in your message, because sadly, I know where you’ve been. Yes, it feels like a crushing nightmare that you cannot awake from…

Not only are you suffering physically–all the people who are supposed to help you are NOT doing so. Not doctors, perhaps not even some loved ones. Pain is a cruel, cruel illness–it is so misunderstood. The toll it takes on one’s health is serious enough. Add to that the torment of being judged, doubted and mistreated… It DOES feel like it’s more than anyone can or should be able to bear. And, for some, this suffering IS too much to take.

Intense pain caused by injury or illness does lead many to thoughts of suicide. It’s the lack of treatment when a person gets to that point that I believe pushes people over the edge. Pain KILLS.

I know, because I have been on that ledge, Shannon, right where you now stand. I tried twice to step off it. Twice a voice somewhere inside me said “NO! You can’t. It’s *not* over.” Like you, I told myself, ‘FINE. Just one more try. If this doesn’t help, I can still end my pain on my terms.’

And when I decided to try once more, a strange set of circumstances lead me to the perfect doctor *and* the perfect support system. Ironically, it was a stranger who helped me, too. He gave me the phone number of the doctor who saved his wife’s life. What a gift that was! And here I am.

As hard as it is to do, you have reached out your hand to ask for help. Don’t you see how perfect it is that you asked ME to help you find your way out of this darkness? I was you, Shannon, in 2007. Though it was just five years ago, I am now a completely different person.

I now see the power of what ONE PERSON can do. Pain Advocacy has become my life. I do what I can every day, hoping to repay the kindness that was shown to me when I needed it most. Your letter really touched me, and I want to give you all the help I can, so you can be well again.

Though you have every doubt in the world, though is the hardest fight you’ve ever faced… Even if you don’t see if yet, YOU ARE A SURVIVOR. You ARE strong enough, you CAN do this. I know from personal experience! It can and will get better for you with the right help. A doctor who “gets you” makes all the difference. I will help you find the right treatment to save your life.

Two things to get you started:

(1) All patients without effective care may benefit from the advice given in the article, Tips & Secrets: How to Find a Good Pain Management Doctor online at http://thepainstore.blogspot.com/2010/10/how-to-find-good-pain-doctor-tips.html. This is based on information I have used, myself–as well as tools I’ve used to help others.

(2) It becomes especially important to ensure physicians see that you are suffering with severely pain. How do you do this? Provide current and prospective physicians information on the OBJECTIVE signs of severe pain: http://pain-topics.org/pdf/Tennant-PainSigns.pdf. Medical professionals often refer to pain as the 5th vital sign, but how many actually look for it in their patients? So many doctors believe pain is a subjective complaint. In fact, there are many signs!

Going forward… Know that effective pain care does exist. And, I will help you find it.

All I ask of you, Shannon: Promise me you will trust me enough to hang on. Not just for your family, but because YOU deserve a chance at life again. To really live. You will get there! And one day, you will be so well, you may find yourself in my shoes… helping someone else to survive this terribly difficult disease.

If at any point you feel like you are in need of immediate attention, please call 9-1-1. There is also the National Suicide Prevention Lifeline: 1-800-273-8255. I sincerely hope you don’t get to this point, because I believe you want help as much as you truly deserve it. Hang in there, ok?

I’ve emailed you my contact info. Feel free to write back or contact me via Twitter @IntractablePain, anytime, as well.

Take care Shannon, and I’m so glad you reached out! I’m hoping to hear from you very soon. Hopefully today… I’m here for you.

Hugs, Heather G.

**************
UPDATE December 2012: I am happy to report than Shannon is doing much better, under the care of a specialist who is working to resolve her intractable pain and related conditions. I’m so pleased–everyone deserves appropriate access to care for their chronic & intractable pain!

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

Portrait of Activism: Pain Advocates Meet with Los Angeles DEA

21 Aug

“Advocating for Another” Carnival 2012 – Day 1

By Heather Grace, IPJ Staff Writer

Being an advocate in the pain community can be challenging. Much of the country has a stigma against pain care. The media teaches the public that lifesaving medications are dangerous and addictive–to be feared.
Often, that requires pain advocates to be incredibly brave. We don’t just speak up, and go against the grain by telling people how much our lives have improved by received adequate pain treatment.

We also act. How many people with pain would willingly walk into their local DEA office and openly discuss their pain care with federal law enforcement? I don’t know how many. But, we did.

Myself & 3 other dedicated advocates met with the DEA in Los Angeles to discuss how we could better work with them to build a bridge of understanding between patients & law enforcement.


Pictured are L to R: Heather Grace, Radene Marie Cook, Gina Libby and Doug Cook (members of the American Pain Foundation’s Action Network/Intractable Pain Patients United). Taken January, 2012.

People who live with chronic or intractable pain just want some semblance of a normal life. And the DEA wants to go after bad guys. Why would patients ever be suspects? You’d think it would be simple to tell the difference between a patient and a bad guy. Year after year, the line just seems to become more blurred.

The truth is, law enforcement isn’t taught what a patient is/does. They’re taught to hunt the bad guys-often deceptive, often going to great lengths to get pain treatments that should go to seriously ill people. So how does the DEA see a person with pain like any other sick person?

That’s where advocacy comes in. It’s our job to help them see us as victims in the drug war. And, that’s not exactly an easy task! Good patients, good doctors and even good pharmacies have been wrongly accused. And it can take thousands of dollars to prove your innocence. (In the case of patients, the degree of stress involved can also be life-threatening.)

It’s an important issue with no easy answers, but I’m glad we all worked together and got our meeting with the DEA. I think we made an impression by telling our stories and sharing our concern for other people, just like us. Obviously, a single discussion won’t change people’s hearts & minds. That’s why we never give up!

My fellow advocates are incredibly dedicated–doing all they can, fearlessly and tenaciously, for the benefit of all people with pain. I couldn’t be more proud to be a pain advocate!

The above blog entry is part of a week-long series created by WEGOHealth “Advocating for Another” Carnival 2012. You may follow my blog here, and see me on Twitter @IntractablePain. Check out other entries: #A4AMONTH.

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

September is National Pain Awareness Month–What Will YOUR Focus Be?

21 Aug

By Heather Grace, IPJ Staff Writer

As August is nearing an end, we at IPJ are wondering what people with chronic and intractable pain will be doing to acknowledge the important month ahead. To many, September is just another month. But to people with pain, it can be a very meaningful and important time of year. September is National Pain Awareness Month.

Will you celebrate this month–being thankful for your continued health? Perhaps you’ll think about how lucky you are to have adequate pain care? Or will you focus on pain advocacy, recognizing that so few people have the pain care they desperately need? Maybe you’ll write a blog, share a video about your experience with pain, or make your voice heard in the media?

Please take a few moments to discuss National Pain Awareness Month here. Share what you’re doing to take care of yourself, as well as what you’re doing to help others. We’d also love to hear your hopes/dreams for the future of pain treatment.

And to all people with pain: We wish you a happy healthy September, filled with acceptance, support and understanding.

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

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

30 May

by Heather Grace

CRUSHING BLOWS

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.

SICKER AND SICKER

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.

A NEW BEGINNING

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…

ADVOCACY

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: 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.

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
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.

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