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Don’t be shy.

As part of our Pain Awareness Month Storyathon, we’re collecting 3-5 minute video stories from real people with pain, talking about their personal experiences–from how they were diagnosed to how pain affects their daily life. We’ll be selecting a handful of videos to share throughout September on social media.

Remember: talking about pain is the only way we can create understanding, awareness, and most importantly: change.

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U.S. Pain was one of several organizations to sponsor 30 families with children with chronic pain to attend the 2019 Pediatric Pain Family Camp at The Center for Courageous Kids in Scottsville, KY. The center is specially designed for kids with serious illnesses, offering activities for children with different abilities and an on-site medical center staffed by a full-time doctor.

The campers came together from all across the country July 21 through 25 to enjoy activities like fishing, boating, arts and crafts, and more. Most important, kids and family members had the opportunity to be with others who understand the challenges of living with pain.

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Heater at the California State Capitol Tour in Sacramento, CA.

City & state: Fremont, California

Age: 41

Pain warrior role: U.S. Pain advocate since 2018

What type of health conditions you live with: Chronic migraine disease, adrenal insufficiency, hypothyroidism, growth hormone deficiency (caused Cushing’s disease), trigeminal neuralgia, IBS, and IBD.

What is your favorite tip for others with chronic pain: “I cope by advocating. Talking about my experiences and connecting with others that have just begun navigating some of the hurdles I’ve overcome helps me feel like I’m giving back.”

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Steinberg, second from left, at the HealthyWomen conference panel.

U.S. Pain Foundation’s involvement with various diseases and causes takes its staff members all over the country, and this month was no exception. Representatives gave talks, led sessions, hosted tables and participated in panels at two conferences this month: the HealthyWomen Chronic Pain Summit and the 35th Annual Marfan Foundation Conference.

HealthyWomen Chronic Pain Summit: Fighting for change for the pain community

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The panel.

On July 10, U.S. Pain Foundation took its INvisible Project: Migraine Edition displays to Sacramento, CA, for an educational event at the state capitol building. The INvisible Project is a print magazine and traveling display that highlights the stories of real pain warriors. By bringing these stories to state capitols, the hope is to educate lawmakers about the challenges of living with chronic pain. Prior to California, the tour visited Providence, RI; more locations will be announced soon.

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An increasing number of states offer medical cannabis programs. In most cases, to be eligible, patients must be diagnosed with a specific condition listed by the state. Unfortunately, the list of qualifying conditions can be very limited, meaning a large number of people with chronic pain are left without access.

On July 17, the Hartford Courant published an op-ed by Ellen Lenox Smith–U.S. Pain Foundation board member and Medical Cannabis Co-Director–about Connecticut’s recent refusal to add chronic pain as a qualifying condition for medical cannabis.

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Right now, the Center for Medicare and Medicaid Services (CMS) is soliciting public comment as to whether or not acupuncture for chronic low back pain should be covered by Medicare. You only have until August 14 to provide CMS with your position on its proposal. U.S. Pain has provided a few talking points and tips as to what to include within your comments. You can also read more about the proposal here.

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Pick your pain

By Amber Fonseca

“Pick your poison,” or so goes the expression. But when it comes to living with multiple chronic pain conditions, I think “pick your pain” is more fitting. While I wish that I could choose to lessen my pain or to not have any pain at all, neither quite fits what I mean when I say “pick your pain”.

There are innumerable levels and types of pain: sharp, throbbing, piercing, stabbing, burning, aching, and more. Not all pain is created equally, and neither are the treatments. In fact, many of us with chronic pain find ourselves having to choose between which pain to treat when you have multiple conditions that involve pain, the treatments are different, and often cannot be combined. If you have ever had to choose between a migraine and back flare, you know what it means to “pick your pain.”

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Too often, due to broad misconceptions and a lack of understanding about pain, pain warriors are afraid or ashamed to speak up about their stories.

But the only way we can create change is if we start talking–to loved ones, coworkers, neighbors, clinicians, and even policymakers.

That’s why our theme for Pain Awareness Month 2019, which begins September 1, is “Let’s Talk about Pain.” We’ll be hosting numerous events, campaigns, and activities that center around this idea. In order to truly get the word out, though, we need your help.

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