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.

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4 Responses to “Pain Advocacy Passion Reignited: A Renewed Dedication Chronic Pain Education & Awareness”

  1. Reneebird May 30, 2012 at 3:18 pm #

    Dear Heather Grace,
    What a beautiful and inspiring post. I also live with chronic pain (even though I wish it would move out!), it’s not going to, not yet anyway. Thanks to you, I accept that this is the way it is right now, however, I will not stop looking for ways to get better!
    Sincerely,
    Renee

    Like

    • thepainjournal June 12, 2012 at 5:05 am #

      Thanks Renee, we all have to stay as positive as we can and focus on today. It’s not always easy, but to get stuck in the past and all we’ve lost… how healthy is that? Write anytime–love your Tweets 🙂 HG

      Like

  2. Doug Sharp May 30, 2012 at 3:45 pm #

    We are setting up a Central Pain Syndrome Foundation and need help. We are at the stage of raising money to pay for 501(c)3 status. Please join the Facebook Central Pain Syndrome Group. The CPS Association also has an active yahoo group. Please contact me for info.

    Like

    • thepainjournal June 12, 2012 at 5:04 am #

      The CPS Association is great, everyone should get involved and look for it on groups.yahoo.com. 🙂 Even just the list of symptoms that you get in the newsletter when you subscribe was helpful to me…help me put into words A LOT of things I’d felt but couldn’t explain to others!

      Like

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