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.

Does Nature Explain Why People Leave The Chronically Ill?

15 Mar

by Heather Grace IPJ Staff Writer

A few weeks ago, some friends and I were discussing how so many people we knew had a really rough time dealing with their chronic pain. Not just because pain sucks, and takes a lot out of you, both physically and emotionally. No, sadly, that’s not the worst part. We were discussing the awful, unspoken trauma we experience when loved ones—the people that we believed would be there for us no matter what, 100%—had left when we needed their support most. If you’ve walked down the dark and uncertain path into chronic pain, you know what I am talking about… People leave.

No matter how wonderful your friends and family are, they may not be there through the worst of your pain. If it just happened to people with chronic pain that would be bad enough. But, it almost doesn’t matter what the disease is. People with serious illnesses, no matter the diagnosis, often find themselves abandoned. Critically ill people are deserted by the same loved ones who they thought would always be by their side. The question we were discussing is why?

Why Do They Leave?

One of the people involved in the discussion was the husband and caregiver of a good friend of mine, who was bedridden due to the severity of her Reflex Sympathetic Dystrophy (RSD). Though they didn’t have an easy time of it, and he admits he thought about leaving at times, he stayed by her side. She was one of the lucky ones. He marveled at how many people walk away, how they’re able to leave when someone is so sick, they might die.

“It’s as if those vows are forgotten,” I said. “I think it’s easy to say you will be there in good times and bad, in sickness and health, but do most people really mean that?”

“I don’t know. A good friend of ours dealt with cancer alone—her husband left. I’m not sure why,” John said. “Maybe it’s in our nature… you know, just like animals who carry on, leaving behind a member of the herd that is weak or sick for their own safety.”

I remembered reading about that, too. In the wild, animals instinctively desert those who are attracting predators. If one animal in the herd is dying, and the entire group was to slow down for that one animal, they’d all be in danger. So, they keep moving. Even domesticated animals have enough “wild” in them to follow their instincts about death. Cats are well-known to sneak off on their own when it’s their time, much to the dismay of their human family members.

Though it is common in the wild, not all animals turn on their kin or run off when they’re near death. Elephants have a very distinct death ritual. They remain by their ill family member’s side to the very end. Some wail sadly, running their trunks over the sick one, with tears streaming down their faces.

Could It Be Human Nature?

I had to consider whether John’s observation was, perhaps, an explanation for why this happens time and again. We weren’t wild animals obviously, but was all of this rooted in human nature? I wanted to believe we were at least as advanced as the elephants. Sure, I’d read the studies—seen how the data on attraction and how it’s wrapped up in our human evolution. I knew that what we find attractive is a complex mixture of biology, cultural norms and beliefs, our upbringing, and personal choice.

I could even buy that in some respects, we are no different than animals who unconsciously seek out a sound mate, in order to ensure the survival of the species. Let’s face it, even men that don’t wish to have children still find a woman most attractive when she is of child-bearing age and has a shapely figure, including ample breasts. Is it possible that somewhere in our nature, we are wired to leave the sick mate, and attempt to seek out a healthy one? That was where I drew the line, emotionally. I just couldn’t accept that human nature would drive anyone to leave their sick mate—to discard them in favor of a newer, less worn-out model.

My Own Experience…

Merely talking about the “why” of this phenomenon had opened a deep wound for me. I still mourn the loss of some of the people who left my side when my pain was worst, never to return. I’d lost so much then: first my job, then my house, then just about everything else. Because I’d been through the ringer as a young girl, I’d learned not to count on too many people. I was a survivor; strong enough to handle anything that came my way. I reveled in the knowledge that I worked hard enough and was resourceful enough, that I would always land on my feet. It was my unofficial motto–the thing I said to myself when times were tough and I was worried.

When it was clear I could no longer work, I crumpled in a heap of despair. The rug was pulled out from under me in a way I’d never imagined possible. If I couldn’t count on myself, what would I do? The unknown was dark and looming, growing by the minute, enveloping me a little more, each day. I tried to keep it together, but how do you do that, when you aren’t sure you will ever work again? When your support is dwindling even quicker than your money?

I’d lived with chronic pain for some time—then it became constant and severe, every minute, every day. By the time I developed intractable pain, my lack of support was excruciating. I felt like I’d happened upon a desert wasteland. There was no one left that I could truly rely on. The few friends I had left checked in on me by phone every month or so, but I became afraid to call them. Would they leave me, too?

I’m not going to pretend that being a friend to me at that time was the easiest request. I was asking the people I loved most to be there with me through a shit storm of emotions. Sad, scared, angry, anxious… running through every negative emotion you could think of, in rapid succession. Sure, it was hard. It sucked. But, dammit, I really needed a friend. There were so many times when I just wanted to be able to call someone on the phone, and know that one of them—just one—would care enough to pick up the phone and just be there for me. They didn’t need to solve anything, just listen & maybe say a kind word or two. I’d always been a good listener, was it really too much to ask someone to do that for me?

Is It “The Norm?”

I’m not sure how I found my way to a good doctor and the wonderful support I have now, but it must’ve been divine intervention. After I adjusted to life with RSD and Central Pain Syndrome, I found this whole world of people who had learned—the hard way—that people aren’t always there when the chips are down. It’s an all too common phenomenon; something nearly everyone with serious chronic pain has experienced. We almost expect it to happen to people with pain, once things get really tough.

Everyone I’d talked to about this issue had felt the same way I did; each thought they had unconditional love all around them. However, like me they had each lost several people close to them. And without fail, each of them sadly told me they had not gotten all of those loved ones back, if/when things got better. (Even when people returned, the relationship was typically forever changed. It’s not easy to mend a broken relationship when you know your loved one may once again leave if things are ever that difficult again.) Is this sort of abandonment the norm? It was tough for me to consider, probably because I’d had a rough road, personally.

Taking a step back from the worst of it, I’ve also wondered if it was somewhat of a chicken/egg problem. Did I pull away from them, or was I pushed? Was it a little of both? It’s hard to say, but having gone through so much alone, I now know: I could never do that to someone, no matter how many times they cried on my shoulder.

Chronically Ill Women Fare Worse

Looking at the loss of family due to chronic illness, the statistics are worst for women. Seattle oncologist Dr. Marc Chamberlain noticed an alarming pattern when comparing male and female patients with brain tumors. His male patients typically received the much-needed support from their wives, while a number of his female patients were going it alone, ending up separated or divorced soon after diagnosis.

He decided to do a formal study, working with four other physicians. They studied 515 patients who received diagnoses of brain tumors or Multiple Sclerosis from 2001-2006. The women were seven times as likely to become separated or divorced as the men, according to the study, published in the journal Cancer (November, 2009). Divorce was most common about six months after diagnosis, and people who were married longer seemed to fare better, overall.

While the causes of the divorces in this study are not known, Dr. Chamberlain speculated: “There clearly is an emotional attachment women have to spouse, family and home that in times of stress causes women to hunker down and deal with it, while men may want to flee,” he said.

Though chronically ill women fare worse, anyone who’s chronically ill can suffer the loss of their mate. Marriages of both men and women who are chronically ill are in jeopardy, according to a National Health Interview Survey. The divorce rate among the chronically ill is over 75%.

Why is it so hard for people to stay with someone they love in their time of need?

Yes, the marriage vows should mean something. But, we all realize that being sick is a huge loss to our partners, and that our illness changes the dynamics of the relationship. Being seriously ill impairs our ability to do the things we used to do as a couple. Feelings like guilt, anger and the accompanying miscommunication can further impact a relationship, making it rocky.

“When you lose your social and sexual partner as a result of a disability, it has a huge impact.” Dr. Sandra Weintraub, Director of an Alzheimer’s clinic at Northwestern University, said: “There’s a whole psychological layer. When you get married, it’s not to be somebody’s nurse, and suddenly you are somebody’s nurse.”

Financial problems only make the situation more difficult. When one of the household’s incomes is lost, the cost of healthcare rises, further increasing the tension at home.

Support Systems

The deck is stacked against us, but couples can and do survive chronic illness. What can you do to prevent the breakdown of your marriage or family? What sets couples who stay together apart from those who don’t? The key appears to be ongoing support for all involved.

In the book Families, Illness & Disability: An Integrative Treatment Model by John S. Rolland, M.D., the author, a psychiatrist, admits it was difficult to cope with his wife’s illness while simultaneously caring for his aging mother. “I became aware of how little my own professional discipline seemed to have to offer people in my family’s predicament.” He says, “Any family facing illness and disability should routinely be provided the opportunity for a family consultation around the time of the onset of the condition, as well as continued access to such services over the course of the disorder.

The research of Dr. Chamberlain and his associates can also shed some light on key areas of focus. His team feels that medical professionals who treat the chronically ill should consider including social workers and family therapists as part of a patient’s healthcare team, particularly for younger couples. They found that patients who lose spousal support after a cancer diagnosis are less likely to complete therapy or try new treatments. They also have higher rates of hospitalization and lower rates of hospice care, despite the fact that most people who are terminally ill prefer hospice care to hospitalization.

“It has an enormous impact,” Dr. Chamberlain said. “We know from other studies of patients with cancer that social support is so extremely important.”

Support is important for us all, no matter the diagnosis. If you don’t have the support you need from friends and family, please reach out to the diverse online community.

Sites To Increase Support/Coping:

  1. Chronic Babe’s Coping Tools: http://www.chronicbabe.com/help-desk/cat/71/
  2. Heroes of Healing: http://heroesofhealing.com.

Got suggestions for other great support sites? Tell us in the COMMENTS section, below!

*NOTE: This article first appeared at ChronicBabe.com in 11/2011, thanks to Editrix Jenni Prokopy. Check out ChronicBabe.com… You’ll love it, just like I do!

     

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).

     

Sources:

  1. Beuermann-King, Beverly. National Invisible Chronic Illness Awareness Week. Work Smart, Live Smart: Stress and Wellness Tips Blog. September 12, 2011. Retrieved from: http://stressandwellnesstips.blogspot.com/2011/09/national-invisible-chronic-illness.html
  2. Glantz & Chamberlain, et al. Gender Disparity in the Rate of Partner Abandonment in Patients With Serious Medical Illness. Cancer, Volume 115, Issue 22. Published online: July 30,2009. Retrieved from: http://onlinelibrary.wiley.com/doi/10.1002/cncr.24577/pdf.
  3. Holding, Cathy. The Science of Magnetism. The Independent. September 12, 2008. Retrieved from http://www.independent.co.uk/life-style/love-sex/attraction/the-science-of-magnetism-926693.html.
  4. Kilborn, Peter T. Disabled Spouses Are Increasingly Forced to Go It Alone. New York Times Health. May 31, 1999. Retrieved from http://www.nytimes.com/1999/05/31/us/disabled-spouses-are-increasingly-forced-to-go-it-alone.html?pagewanted=all&src=pm.
  5. Parker-Pope, Tara. Divorce Risk Higher When Wife Gets Sick. New York Times Blog. November 12, 2009. Retrieved from http://well.blogs.nytimes.com/2009/11/12/men-more-likely-to-leave-spouse-with-cancer.
  6. Rolland, John S. Families, Illness & Disability: An Integrative Treatment Model. Basic Books: New York, 1994. Retrieved from http://books.google.com/books?id=i2qwRDemnwcC&printsec=frontcover&source=gbs_atb#v=onepage&q&f=false.
  7. YourDictionary. Why Do Animals Hide When They Are Dying? (n.d.). Retrieved October 7th, 2011 from http://answers.yourdictionary.com/answers/animal-life/animals-hide-when-dying.html.

     

© 2011-2014 Intractable Pain Journal & Heather Grace. All rights reserved.

The Affordable Care Act — Is Our Future At Stake?

30 Jan

by Heather Grace IPJ Staff Writer

After reading information on the Affordable Care Act from (what I believe is) an unbiased source: http://www.businessinsider.com/what-will-change-with-obamacare-2013-10, I wasn’t put at ease. The article confirms what I’ve been hearing from patients and doctors alike. I fear for our future–I really do.

BIG ISSUES WITH THE AFFORDABLE CARE ACT:

  1. Already in 2014, many low income/poor people who want insurance cannot get it. In truth, the ACA WILL NOT HELP UP TO 2/3 OF THE 8M POOR IT WAS INTENDED TO HELP! Though people thought the poor would get free coverage under ACA, most won’t. Of the 50 states, 26 did not expand Medicaid coverage through ACA. (Families without dependent children don’t qualify in these states, for example.)
  2. People who want to keep their “good” PPO insurance plans are already paying a huge price… they all got notices of increased taxes & have been paying them since January (if they could afford to). IN A FEW YEARS, TAXES WILL GO UP EVEN MORE FOR PEOPLE WHO CONTINUE TO KEEP THEIR CURRENT PLANS INSTEAD OF CHOOSING A PLAN ON THE WWW.HEALTHCARE.GOV SITE!
  3. Our overburdened system is already getting worse as a result of the ACA. Docs that either help people at low cost -or- are good pain care providers are seeing record #s of new patients & it’s getting hard to help them all. Because of the government’s “take it or leave it” pricing, staff cuts &/or lower cost (often less skilled) staff will be necessary for all providers that will ultimately survive the next 4yrs & beyond. So will across-the-board budget cuts. Preparations for these inevitable changes are underway. Why? PROVIDERS MUST REDUCE COSTS BY $1.6B WHILE ADDING UP TO 40M PATIENTS TO THE SYSTEM! With a system that’s poised to pay less but ask more of everyone, what’s the incentive to go to medical school? Why be an RN when you can become a CNA or LVN? The possibility that brilliant healthcare practitioners will be paid what they deserve in the future is bleak. Staffing shortages are sure to follow.
  4. ALL THESE ISSUES MAY LEAD TO A SERIOUS HEALTHCARE CRISIS if pie-in-the-sky ideas like “encouraging patients to lose weight/make healthy choices” don’t dramatically reduce the burden on the system, along w/ongoing cuts. If we can’t serve up to 40M more people with $1.5B less money, OUR HEALTHCARE SYSTEM MAY END UP BECOMING A LOT LIKE WORKERS COMP IN THE NEAR FUTURE. WC caused my permanent disability due when my spinal cord injury that wasn’t cared for appropriately. No one should wait 2yrs+ for a desperately needed MRI & then another 5yrs+ for much-needed surgery to fix a disc that’s severely pressing on the spinal cord! Yet, I did. By the time I got my surgery, it was too late. My career, my home, any chance of getting back to “normal” — everything was gone! Think I’m a rarity? Think again! I’ve met far too many people just like me, who were seriously injured &/or permanently disabled by WC’s medical neglect.

DO YOU WANT YOUR FUTURE TO LOOK LIKE MY WORKERS COMP EXPERIENCE? I lived this misery & I don’t want this sort of ‘healthcare’ for anyone! Short of expecting *everyone* to pay cash for procedures instead of waiting (assuming they can afford to), what can we do to ensure a better future for U.S. healthcare? Any ideas on how to prevent catastrophe?! Let us know in the Comments section, below. Good luck to us all…

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).

© 2014 Intractable Pain Journal & Heather Grace. All rights reserved.

Being Sick

12 Dec

So I’m sitting here trying to remember myself
And the details get fuzzier each day
But the truth is, that’s just how it is
How it is to be me… to be me, sick

U.N. Convention for Rights of Persons w/ Disabilities? CRPD is Against the Disabled!

3 Dec

by Heather Grace, IPJ Staff Writer

I am appalled at the tactics being taken under the guise of “equality” by the U.N. And presumably, the U.S. Senate if this vote goes through on Tuesday. The U.N. Convention for the Rights of Persons with Disabilities, or CRPD, is flat out *wrong.*

To require disabled infants to register immediately after birth (Article 18) and forcing disabled people to comply w/ mandatory monitoring (Article 33) is disgusting. Where in those requirements is there individuality *or* equal rights?! Last time I checked, this wasn’t Nazi Germany! What exactly is the U.N. attempting here?

As a disabled American, I am extremely offended–NO, OUTRAGED! Rounding people up to “protect” them will be next, right? Thanks but NO THANKS! I have done just fine without being labeled & monitored like a lab rat. The rights of disabled people have already been well established without branding us all with a scarlet “D.”

So I urge you, my Senator, to *PLEASE* VOTE NO! And, please also urge the entire Senate & U.N. to reconsider this dangerous ideology. CRPD is not about giving anyone equal footing, it’s about STEPPING ON THE LESS ABLE.

I say it again: *PLEASE* VOTE NO!

Thank you for your time & attention,
Heather Grace
Californian since birth
Disabled since 1999

NOTE: The above letter was sent to senators as well as posted to my web site and on social media. I’m speaking up for all people with disabilities, without requiring any strange & underhanded things on the part of my fellow man. Imagine that! I hope the U.N. & our U.S. government will do the same. Rethink your actions and stop playing games with people’s lives! Neither the U.S.–or any country–need your hand in the lives of our disabled citizenry!

To my readers: The full text of the CRPD is online at http://www.un.org/disabilities/convention/conventionfull.shtml. Please read it for yourself. YOU MAY ALSO BORROW MY ENTIRE LETTER (OR EDIT/SEND PART OF IT) TO SEND TO YOUR SENATOR. Contact them online at http://www.senate.gov/general/contact_information/senators_cfm.cfm. Or, call them via 202.224.3121. If you plan to do so, do it asap! The vote is tomorrow, December 4.

* Follow me on Twitter @IntractablePain
* See more articles at http://thepainstore.blogspot.com.

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.

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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.

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