BJ and Sabrina Numann live in the Louisville, KY area. They have three grown children: Steven, 25, Heather, 22 and Jacob 19. BJ works at a factory while Sabrina is on disability and stays home offering support for her husband and pets. With their children grown, married and off to college they spend their days enjoying their pets, playing games or chatting with friends online and watching their favorite movies. They enjoy summer weekends on the Ohio River with close friends and family. They are both very social people with a large circle of friends who gather together regularly.
Sabrina’s symptoms began as a teen, but they were thought to be growing pains or laziness. In 2001 a broken leg sparked her first FM flare and her expanding list of medical conditions. Her diagnosis in 2009 was the beginning of a new quest for answers, better health and quality of life. After being forced to successfully apply for disability, Sabrina was finally able to focus on her health in a bigger way. With the help of alternative aids like breathing exercises, meditation, exercise, proper specialized medical care and proper diet she continues to slowly regaining control of her life and health.
With BJ’s support and standing by her side, they organized a small meeting group for others with FM. Everyday they both learned new ways to improve Sabrina’s health, and together they shared what they knew with their support group members and the medical community. BJ focuses his efforts during meetings towards helping the caregivers and loved ones of people with FM. His understanding that caregivers need just as much support as the people they help is one of the keys to their group’s success.
Working together they offer a combination of support that reaches all sides of chronic pain. Sabrina and BJ both speak at conferences and hold annual events and fundraisers. They work closely with the NFMCPA Leaders Against Pain Action Network to advocate for better healthcare. For almost six years they have consistently held monthly support meetings. Utilizing media of every kind, they have managed to reach thousands of people while their group continues to grow daily. Both BJ and Sabrina finished their Leaders Against Pain training in 2012, and they continue to use that guidance to improve their organization.
With new skills and the help of many volunteers, they propelled to a nonprofit status in 2013 and increased awareness with bigger and more efficient fundraising events. In May each year, they hold a free and public Annual Fibromyalgia Awareness Day Picnic in downtown Louisville. When Sabrina was asked about her journey with FM, she said:
“The hardest part of having fibromyalgia is all the other medical conditions and symptoms that come with it, especially the cognitive dysfunction and memory loss! It is sometimes seemingly impossible to manage them when they overlap and it feels as if there is no way to know which condition is causing which symptom. This is extremely frustrating for not only me and BJ but my physicians as well.
I have excellent healthcare, I’m blessed in that way and I don’t take that for granted. I’ve worked hard with my doctors in both communication and education so we can get to the bottom of what is really happening rather than just popping pills and hoping for the best. This is extremely time consuming and costly! But mostly it’s highly stressful on both of us. BJ and I are a team, and he often feels helpless. Although he tries his best by offering suggestions we are both often left in the dark. I feel and hear this in our support group members as well; it’s so hard to say to them that we have no more answers than their doctors do. We’re learning more as we go; learning which symptom goes where and what to do, but it can take its toll.”
Sabrina acknowledges that “On the upside, communication is by far the key to this mess. Without honesty in how we feel, we would have gone crazy. Instead, this fibromyalgia journey has made us closer than ever before. ”