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The INvisible Project


Photography and stories to illustrate the day-to-day struggles of real people living with chronic pain. 

The goal is to make visible the experiences and challenges that are oftentimes hidden, ignored or misunderstood.

 

U.S. Pain Foundation is excited to announce the launch of the 2015 INvisible Project this January!

 

We would like to acknowledge and thank our upcoming participants - Anthony Ameen, Casey Cashman, Emily Lemiska, Guy LoPresti, JP Summers, Lynne Popadak, Melanie Dickens, Michele Rice, Nick Duggan and Robert Foley - for being a part of this profound campaign.

 

Learn More

 

View: "In Their Own Words - The INvisible Project 2015"


September's Schedule

September is a busy time of year, we would like you to be part of our awareness events! We would love to see our pain warriors! Please look for continually updated lists throughout the month! 

Beautify in Blue:
Various locations throughout the country to gain interest in Pain Awareness Month (pictures of different locations will be shown weekly)

Proclamations:
Various states and cities throughout the country declaring September Pain Awareness Month (a list and pictures will be shown throughout the month)

PAINWeek
September 8-12th
The Cosmopolitan of Las Vegas

AAPM Annual Meeting
September 17-20
Gaylord National Resort & Convention Center
National Harbor, MD

Boston Abilities Expo
September 18-20
The Boston Conference & Exhibition Center 

Opiate, Pain Reduction, and Alternatives
Miriam Hospital
Providence, RI
September 19th
2-4 PM 
Contact: Ellen Smith

Please continue to check your e-mail and all social media outlets (Facebook, Twitter, and Instagram) for more events throughout the month of September! We will updating you weekly with photos and updated events throughout the month, and we don't want you to miss out on an event near you!

AmazonSmile

 

Don't forget that U.S. Pain joined forces with AmazonSmile! 

This is simplest, easiest and most automatic way for you to support U.S. Pain Foundation every time you shop! 

Simply visit http://smile.amazon.com/ and choose U.S. Pain Foundation as the organization you wish to support. Then each time you make a purchase through AmazonSmile, Amazon will give to U.S. Pain in a form of a donation. It is that easy and there is NO COST to you!

 

August 11, 2015
Pain Awareness Month
September 2015
To My Fellow Pain Warriors and Friends:
 
The U.S. Pain Foundation is happy to say that after preparing for months on end, it's finally HERE!! September, that is! That means it's time to bring pain awareness to the country.

Put on those PAIN WARRIOR bracelets, put out some U.S. Pain pamphlets, attend an event, and educate! This year we are trying to get each and every one of you involved in Pain Awareness month, whether that is simply just participating in our 30-day challenge or it is hosting an event. 

This month is about and for you! We want all of you to feel included in everything going on, so look for weekly updates on events and pictures of all that is going on! We are very proud of our efforts this year and look forward to sharing them with you! It is time to educate,  inspire, and empower everyone around you! 

Thank you for being a part of our mission - to improve the lives of those living with pain by validating chronic medical conditions and educating others. You are all pain warriors. U.S. Pain is here to help. Happy Pain Awareness Month!

 

Wishing you all a low-pain and high-spirits day,

Paul Gileno

            Founder & President, U.S. Pain Foundation

Join Me For Pain Awareness Month in September 

By: Jenni Propoky, U.S. Pain Foundation Advocate and ChronicBabe founder

It's not often that I write about a particular chronic condition. My work here at ChronicBabe has been focused on the idea that no matter what ails you, we all share similar experiences and can use common tools to craft lives that are truly exceptional, despite chronic illness... so talking about a specific condition doesn't make much sense.

Except now.

Today, I want to recognize a cause that's very close to my heart: Pain Awareness Month . It's held every year in September, and as someone with chronic pain, it's an important month.

An estimated 100 million Americans live with chronic pain-that's daily, relentless, unsolvable pain. Many of us are disabled by the pain and unable to work, to parent, to socialize and more. It is a crippling burden for not just the people in pain, but all those who love and care for them: friends, family, neighbors, classmates, co-workers, health care providers and more.

So many of us want to live more satisfying lives in spite of pain, and we work very hard to do so. I'm including myself in those millions of people; I've had pain every day since mid-1997, and I have never given up. Despite hospitalizations, passing out from pain, radical impairments and more, I'm still striving to kick a$s in spite of pain.  

People in pain often get a bad name.

We get called lazy. We're told it's all in our heads. People think that we should just suck it up. But if you have any kind of chronic pain, either as your primary chronic condition or as a byproduct of some other illness, you know that people in pain are the farthest thing from lazy. People with chronic pain are some of the strongest, bravest people I've ever known.

Through my work with organizations like the U.S. Pain Foundation, I've met hundreds of incredible people who are helping change the stereotype of people in pain. They work hard, they play hard, they laugh so hard I almost tinkle myself. We have a blast together, because we are united by our experience and we share an instant bond whenever we meet-it's a terrific community. Passionate, driven, creative, emotional, empowered and full of love.

We need your help.

Let's band together to give our community a GOOD name, OK? Let's work together to educate those around us about the realities of chronic pain so we can have informed and productive conversations about lifestyle, medications, legislation and more. Let's learn to be more compassionate toward each other.

If you'd like to join the movement, I urge you to sign up to be a U.S. Pain Foundation State Pain Ambassador, as I am for Illinois. It costs nothing; in fact, you get the benefit of tons of education and materials, and even if you're severely disabled or otherwise limited, there's still a lot you can do to make a huge impact.

Organizations such as U.S. Pain craft activities and programs that empower the pain community while connecting and informing the nation, and there will be numerous events throughout September in every state in the U.S. You can contact Shaina Smith for more information about getting involved.

We also work together to create things like the INvisible Project, an online and print magazine featuring stories of people in pain that will inspire you, guaranteed. (I know; I'm the editor for this project and reading their stories blows my mind every time. Get your tissues ready!) There are opportunities to participate in lots of other events around the country, all year long; here's a short list to get you thinking. U.S. Pain is always open to hearing suggestions for more events; after all, you know best what your community needs and how they'll be able to receive and use information.

If you have more questions about how to get involved, don't be shy! Shoot me an email or contact U.S. for more information.

And finally:  If you're a person in pain and you don't have a good support network, please:
 1. join the ChronicBabe forum to meet other pain babes 
 2. check out the Heroes of Healing community, run by U.S. Pain just for those of us fighting pain. 
You are NOT alone. You don't have to let isolation add to your burdens... there are millions of us out there who've got your back, OK babe?

Thanks for taking a moment to read this personal appeal. I know SO MANY of you cope with pain, so I want to be sure you get great resources in hand, and the chance to participate in terrific events. If you have any questions, don't be shy. XO!

September's Pain Awareness Month with U.S.  Pain 
 
This year U.S. Pain is asking all of our pain warriors to get involved in one of the various programs we have.

30-Day Pain Awareness Month Pledge:
As part of our Pain Awareness Month Campaign, we're starting off by uniting pain survivors, caregivers, healthcare professionals, lawmakers and others in the form of a pledge. The pledge is a simple way to show the nation that chronic pain is a disease, which needs to be addressed through policies, education and fair access to treatments. By electronically signing the pledge, you are empowering the pain community while supporting the organization's mission. We hope that you will join us in our effort to eliminate the discrimination and stigmas within society when it comes to invisible illness. Show your support for the Pain Awareness Month Pledge by visiting U.S. Pain's Facebook page and posting the hashtag #ITookThePledge under the pledge picture.
Participate in our 30-day Challenge!
Do you wish to stay involved with the Pain Awareness Month movement across the nation throughout September? U.S. Pain has created a fun way to be active and beneficial within the pain community! Each day, participants can partake in a "challenge"--a task that pertains to the pain community, the organization or like-minded groups. The goal is to complete as many of these challenges as possible in an effort to become the voice for those who cannot speak. Please keep updated our daily challenges through e-mail, Facebook, and our other social media outlets! We look forward to seeing your participation and the awareness we can create together! 


Pain By the Numbers
By: Rachel Gotbaum

In one of the largest population studies on pain to date, researchers with the National Institutes of Health estimate that nearly 40 million Americans experience severe pain and more than 25 million have pain every day.
 
Those with severe pain were more likely to have worse health status, use more health care and suffer from more disability than those with less severe pain.

"There are so many people in the severe pain category that something has to be done," said Richard Nahin, the lead author of the analysis and lead epidemiologist for the National Center for Complementary and Integrative Health, the arm of the NIH that funded the study. "If people are in the most severe category of pain, whatever treatment they are getting may be inadequate."

Published in The Journal of Pain earlier this month, the study is an analysis of 2012 data from the National Health Interview Survey. It follows a comprehensive 2011 Institute of Medicine report on pain.

The analysis examined pain differences among ethnic groups. For example, Hispanics and Asians are less likely to report pain.

"If you are dealing with a minority group that doesn't speak English, you need to pay greater attention to eliciting what they mean when they say they have mild pain or severe pain," Nahin said.

The authors of the analysis hope their work will help inform greater research and better treatment options for people in pain.

"We're doing a lot of research on the mechanism of pain and potential medications. The problem is there is no silver bullet," said David Shurtleff, deputy director of NCCIH. "These data are giving us a better understanding of the pain conditions in the United States. We now can understand how sub-populations across age and across ethnic groups are experiencing pain."

Shurtleff said that pain is a challenge to treat because it is not just about what happens to a person physically. Emotional and cognitive factors come into play as well.
 "Our major focus is on symptom management for pain," he said. "It's not necessarily [one] medication or behavioral intervention. It's likely to be an integrative approach using multiple strategies to help patients alleviate their pain."

Paul Gileno, who has had chronic pain since he broke his back 12 years ago, is doing just that. Gileno, who founded the U.S. Pain Foundation advocacy group, uses acupuncture, meditation and changes to his diet to manage his pain. He is now able to take fewer painkillers, he said.

"You need to keep trying these different modalities because you never want to give up hoping that your pain can be reduced or go away," he says.

Gileno endured multiple surgeries and has tried many different pain medicines, but he still lives with pain every day.

"After I saw the last neurologist and the last doctor and they said, 'Listen we've done everything we can do and I don't think your pain is going to go away,' I had to come to terms that I would have chronic pain for the rest of my life," said Gileno. "Pain comes with a lot of baggage. It comes with depression. It comes with feeling judged and you feel less of a person. You become very isolated."

Untreated pain is something Dr. Sean Morrison sees in many of his patients. He is a geriatrician and director of Palliative Care at Mount Sinai Hospital in New York.
"Pain causes a tremendous amount of suffering," said Morrison. "It has huge economic costs, because of people who cannot work ... And it has a significant impact on caregivers who are caring for people who have pain."

As more effective treatments are developed for a greater number of diseases, a growing number of people will suffer from pain as a side-effect, he said.

"Many of the cancer drugs we use now result in permanent nerve injury and resulting neuropathic pain which is very difficult to treat," he said.

Another of Morrison's frustrations is the growing level of scrutiny physicians and pharmacists are under as they treat pain. The law enforcement crackdown on prescription drug abuse appears to be making it harder for legitimate pain patients to get the medicines they need.

"What's happening is that the same drug is being used appropriately by group of patients and inappropriately in a large segment of the population," Morrison said. "What we've seen is people in pain are the unintended victims of the war of drugs."

NIH is in the process of finalizing a National Pain Strategy to coordinate efforts among different agencies to prevent, treat, manage and study pain.

Partnering Groups 
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U.S. Pain Foundation would like to thank all of its corporate members.

 

To see a list of our corporate members, please click here

 

 

U.S. Pain Foundation | uspainfoundation@gmail.com | http://www.uspainfoundation.org
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