City & State: Eustis, Florida
Age: 53 years old
Pain Warrior role: Advocate since 2014
What type of health conditions you live with: Central pain syndrome post-stroke, stiff person syndrome, Grave’s disease post-thyroid cancer, hypercoagulation
What is your favorite tip for others with chronic pain: “There’s always a way! No matter your circumstance, keep looking until you find what works for you. Find you tribe, your support community and continue searching for that better quality of life. With technological advances progressing, there are more choices and resources to help pain patients than ever before. And never lose your sense of humor.”
On June 16 and 17, U.S. Pain Foundation hosted an intensive training for nine future chronic pain support group leaders in Chicago, IL.
The training program was developed by Gwenn Herman, LCSW, DCSW, clinical director of Pain Connection, a program of U.S. Pain. By training more group leaders, U.S. Pain hopes to expand its network of support groups. Presently, U.S. Pain and Pain Connection offer support groups in eight states: Connecticut, Massachusetts, New Hampshire, Maryland, Pennsylvania, Michigan, Arizona, Washington, and California, in addition to three conference call support groups.
Chronic pain comes in many shades. The descriptions alone can be colorful: throbbing, shooting, aching, burning, freezing, and so many more. Pain patients rarely describe their pain by using only one of these vivid explanations. Just as there are innumerable ways to describe pain, there are countless conditions that can cause or contribute to chronic pain; each condition is represented by its own awareness ribbon color.
Members of the pain warrior community came together June 2 for U.S. Pain’s third annual “Real Hope, Real Heroes” gala in Scottsdale, AZ. This year’s event specifically honored participants in the migraine and rheumatoid arthritis/rheumatoid disease editions of the INvisible Project.
Guests were surprised with a special appearance from Karen Duffy, an actress, TV personality and model best known for her work as an MTV video jockey in the 1990s and from roles in hit movies like “Blank Check,” “Reality Bites,” and “Dumb and Dumber.” Duffy lives with chronic pain as the result of sarcoidosis, a rare disease that impacts the brain and central nervous system. She has become an advocate for the chronic pain community and is the author of two books, including “Backbone: Living with Chronic Pain without Turning into One.”
City & State: Leesburg, Virginia
Age: 59 years old
Pain warrior role: U.S. Pain ambassador since 2017
What type of health conditions you live with: I am living with Rheumatoid Arthritis, SLE Lupus, Type 2 diabetes, migraines, and chronic back pain.
What is your favorite tip for others with chronic pain: “My tip would be to keep a spirit of peace. I believe our attitude has a lot to do with our healing process. For me, I try to extract something good. Pain never feels good but doesn’t have to overpower you.”
On May 15, U.S. Pain’s bimonthly webinar featured Jenni Grover, also known as ChronicBabe, who has dealt with fibromyalgia and other health issues for over 20 years. Through ChronicBabe.com, she has helped thousands of women cope with their own chronic pain. (Grover is also an editorial consultant with U.S. Pain’s INvisible project and a longtime patient advocate.)
Her recent book, “Chronic Babe 101: How to Craft an Incredible Life Beyond Illness,” is a collection of resources about “how to kick butt despite chronic pain.” In the webinar she spoke specifically about a chapter on acceptance, part of the “grieving process” that is hard to get past when dealing with chronic health issues. Acceptance isn’t a loss or defeat, she explained, and viewing it as a war to be won means seeing your body as the enemy.
U.S. Pain Foundation tracked nearly 900 bills relating to patient access and safety issues at the state level this session. Those priority issues, which included medical cannabis, integrative pain care, and access to innovative therapy options, yielded 150 bills that will now become law.
What set this session apart from years past is the number of campaigns offered to advocates and how many volunteers acted on the engagements. “We saw a huge surge in the number of volunteers who participated in both state and federal issues ,” says Shaina Smith, director of State Advocacy and Alliance Development for U.S. Pain. “To increase advocacy opportunities, we have created 11 engagements since the start of January, with more on the horizon. To date, a total of 2,846 letters have been sent by advocates to Congress and state lawmakers. This is an astounding feat and would not have been possible without the dedication and passion from our volunteers; I am truly touched and grateful.”
Opportunities for people with pain to have their voices heard by federal officials are rare. That’s why it’s so important for the public to take advantage of two major opportunities to comment on the state of pain care at the highest levels of the U.S. government: the Department of Health and Human Services (HHS) and the Food and Drug Administration (FDA).
Opportunity #1: HHS Interagency Pain Management Best Practices Task Force
Deadline: June 15
How to take action: Submit comments here
On May 23, Americans for Safe Access (ASA) awarded U.S. Pain with its inaugural “End Pain, Not Lives” Champion of the Year, a new award that recognizes the organization that best supports ASA’s effort to make it easier for people with pain, chronic pain, and opioid use disorder to utilize medical cannabis in their treatment plans. The award was presented at the Unity Awards Dinner, as part of ASA’s National Medical Cannabis Unity Conference in Washington, D.C.
It’s National Migraine and Headache Awareness Month (MHAM), and we have a number of exciting developments to kick it off, as well as numerous ways to participate. Be sure to follow U.S. Pain on Facebook and Twitter to stay up to date on the latest news, events, and ways to get involved.
First-ever migraine prevention drug approved
On May 17, the Food and Drug Administration (FDA) approved the first-ever migraine preventive drug. Often referred to as a CGRP (calcitonin gene-related peptide) or CGRP inhibitor, the drug blocks the CGRP receptor that is believed to play a role in migraine.