279: Cynthia Toussaint: Battle for Grace and CRPS

On this episode of the Healthy Wealthy and Smart Podcast, I had the pleasure of welcoming Cynthia Toussaint onto the show to discuss her experiences as a patient managing Complex Regional Pain Syndrome. Cynthia Toussaint is the founder and spokesperson of For Grace, an organization that promotes better care and wellness for women in pain. Toussaint championed and gave key testimony at two California Senate hearings – one was dedicated to CRPS awareness, the second explored the chronic under-treatment of and gender bias toward women in pain. She will lead a 2017 conference that will convene healthcare and policy leaders to bring pain care into the 21st century. The solutions proposed at the event will mandate structural changes that respond to patient needs and gender inequalities in California. Toussaint is the author of Battle for Grace: A Memoir of Pain, Redemption and Impossible Love. In this episode, we discuss: -The story behind Cynthia’s long battle with Complex Regional Pain Syndrome -How Cynthia developed independent survival solutions when medical providers would no longer help -Why gratitude, acceptance and grieving are necessary components for the management of chronic pain -For Grace: better care and wellness for women in pain -And so much more!   Cynthia’s long history of battling unimaginable physical and psychological pain has taught her how to be resilient. She believes, “We don’t know what we can live with until we are there.”   Cynthia has used her past experiences as inspiration for her advocacy and has created meaningful change for CRPS patients. Based on her experience, she stresses, “Don’t ever let anybody say you can’t get something done.”   Cynthia has found that adversity can breed strength and that, “People who go through the impossible odds survive and they go on to make the world a better place.”   After exhausting her family support system and the recommendations of her medical providers were unable to help with her chronic pain, Cynthia found her greatest relief through her own strength and will. She states, “With high impact chronic pain, we have to refuse to be a victim. We have to be our own advocates. We have to be deeply involved with self management.”   For more information on Cynthia: Cynthia Toussaint serves as Spokesperson at For Grace and has had Complex Regional Pain Syndrome for 34 years. She later developed Fibromylagia and other over-lapping, auto-immune conditions. Cynthia founded For Grace in 2002 to raise awareness about CRPS and five years later expanded the organization’s mission to include all women in pain. Before becoming ill, she was an accomplished ballerina and worked professionally as a dancer, actor and singer.   Since 1997, she has been a leading advocate for women in pain, raising awareness through local, national and worldwide media as well as public speaking. Toussaint championed and gave key testimony at two California Senate informational hearings. The first, in May 2001, was dedicated to CRPS awareness. The second took place in February 2004 and explored the chronic under treatment of and gender bias toward women in pain. Both of these efforts were the first of their kind in the nation.   In 2006, Toussaint ran for the California State Assembly to bring attention to her CRPS Education Bill that Governor Schwarzenegger vetoed after she got it to his desk in its first year. Her next bill, a seven year effort, was signed into law by Governor Jerry Brown in 2015. This Step Therapy legislation reformed an unethical prescription practice used by the health insurance industry to save money in a way that increased the suffering of California pain patients.   Toussaint was the first CRPS sufferer to be featured in the New York Times, Los Angeles Times and on the Public Broadcasting System and National Public Radio. She is a consultant for The Discovery Channel, ABC News, FOX News, the National Pain Report and PainPathways, the official magazine of the World Institute of Pain. Also, she is a guide and guest contributor for Maria Shriver’s Architects of Change website.   Her many speaking engagements include the National Institutes of Health and Capitol Hill.   She is the author of Battle for Grace: A Memoir of Pain, Redemption and Impossible Love. Also, Toussaint is experiencing her first-ever partial CRPS remission largely due to the narrative therapy of writing this book.   Toussaint continues to be a leading advocate for health care reform in California. She was instrumental in changing public opinion which sparked sweeping HMO reform legislation that was signed by Governor Gray Davis in 1999. Her focus has now shifted to creating a single-payer, universal health care plan in California that would provide a model for the rest of the country.   Resources discussed on this show: Battle for Grace: A Memoir of Pain, Redemption and Impossible Love For Grace: Women in Pain Facebook Cynthia Toussaint Twitter For Grace Website   Thanks for listening and subscribing to the podcast! Make sure to connect with me on twitter, instagram and facebook to stay updated on all of the latest! Show your support for the show by leaving a rating and review on iTunes!   Have a great week and stay Healthy Wealthy and Smart!   Xo Karen   P.S. 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