Gina Libby strives to improve pain medication legislation
At 42 years old, Gina Libby has lived with chronic pain for more than 20 years. Yet, it hasn’t stopped her from making an impact; she’s on the front lines of pain advocacy, using her experience to influence healthcare policy and teach others.
As a young girl, Libby was diagnosed with severe scoliosis, or curvature of the spine, that caused significant pain. As an athlete, she fought through it to continue playing sports in college until the pain became too much. At 20, she had a long spinal fusion, an operation that permanently connected all the thoracic vertebrae and most of the lumbar vertebrae into one solid structure in her body.
For more than 15 years, surgery gave her some improvement, but she still lived with nagging, achy muscle pain. Then, about five years ago, she began to experience extreme nerve pain shooting down her legs, impairing her ability to walk and perform her job as a senior food and drug investigator for the state of California. She scheduled an outpatient procedure — spinal decompression surgery — meant to alleviate her nerve pain.
Instead of relief, surgical complications turned her world upside down. She experienced neurological impairment of both legs and two dropped feet; Libby was left unable to walk. She entered rehabilitation immediately.
"The most interesting thing about that whole experience," Libby said, "is that by the grace of God, for about the first two and a half months, I had absolutely no pain. So here I was cruising around on my walker, happy as a clam because I wasn’t in pain." The realization that being on a walker was so much less disabling than life with chronic pain, even though some people pitied the woman on a walker, "was a rude awakening to me."
Now Libby uses walking poles that many people mistake for athletic equipment; strangers frequently joke around with her by asking if she’s headed out to go skiing.
"Nobody would ask that if they knew I was just out of surgery and had lost my ability to walk," she said.
She loves cheerfully teaching people about the benefits of the equipment.
"I don’t know that there’s any aspect of my life that hasn’t been affected by pain," Libby said. The lives of her husband and daughter — as well as those of her parents and in-laws, who help her as much as they can — have also been altered.
But she’s not bitter. "What I’ve learned most is that I am … and you are … more than pain. And we’re more than our bodies," Libby said. "Getting in touch with that, having the strength and support to discover and be willing to love the ‘new’ you is a huge learning point. It’s about acceptance, although it’s counterintuitive to accept pain." She has learned numerous coping skills through counseling and cognitive behavioral therapy. "I can’t go climbing in Yosemite like I did when I was 19," she said. "But I like who I am more, the person I’ve become in terms of my attitude and my compassion for others. For many of the years I had pain, I didn’t like me." Now she channels her feelings about life with chronic pain toward efforts that help others.
"This experience of pain is humbling, to the point of realizing we’re all in this together. When one suffers, we all suffer," Libby said. She currently serves on the advisory councils to the Northern California Pain Initiative and the Southern California Cancer Pain Initiative; with these groups, her focus is on improving pain care legislation.
"The personal connection that occurs through advocacy is so rewarding and inspiring, because I hear of people almost daily that deal with things so much worse than mine," she said. "The fact that those people are still up and fighting and making a go of it … that’s something I want to be a part of."
Libby said an unbalanced public perspective on chronic pain — especially the focus on a minority of patients who abuse prescription medications — has to shift. Without that shift, she says, millions will continue to be undertreated. At the same time, she explained that many healthcare providers aren’t taught pain treatment or management during school, so those prescribers unintentionally exacerbate the problem by undermedicating, overmedicating or just plain incorrectly medicating patients.
The lack of education about chronic pain — its origins, treatment approaches and long-term impacts — puts healthcare providers at a disadvantage. And the public — also lacking knowledge — is less than understanding about chronic pain, Gina said. "People in pain are playing catch-up with those suffering from other conditions," she said. "The tragedies we live with are not death tragedies, but they’re still loss. People don’t understand how powerful it is."
Libby said we desperately need a cultural shift toward acceptance of chronic pain as a recognized health condition. She pointed out that we don’t have a medical code for the treatment of chronic pain, which impacts 700 million people in the United States. Until healthcare providers are reimbursed for their work — and pain treatment is taught in schools — how can we expect the public to catch up and support those in pain? As she put it: "We’re all screaming for help, and we’re wondering who’s listening."
"Pain takes away independence," Libby said. Those in pain depend hugely on the support of family, friends and health care providers to make their way in the world. Being a chronic pain advocate, she says, has helped her feel stronger, more self-driven. "We advocates, we’re a big family," she said. "This work has gone a long way toward rebuilding my self-esteem and sense of self-worth. It’s saved my life."
She said it’s possible for people in pain to choose a new way to live, in spite of their experience. "You won’t necessarily have the life you’ve had before, but you can define a beautiful new you, a strong you, that can emerge. It’s like the phoenix rising."
Chronic pain sufferer Dennis Kinch pens book to encourage pain community
Dennis Kinch lives by the motto, "Do what you can, when you can." These seven words have carried him through hardships and triumphs. In 2005-2006, they even spearheaded his crusade to walk the entire Route 66 to raise awareness about chronic pain.
In 10 months, Dennis walked 2,400 mi. with a wheelbarrow containing his personal possessions. He slept in a tent and visited pain clinics and hospitals along the way to discuss pain with others. Extraordinarily, Dennis accomplished this long trek while dealing with his own pain.
His chronic back pain began more than two decades ago after twisting his back moving a freezer. Then in 2001, doctors diagnosed him with ankylosing spondylitis and Paget’s disease. Ankylosing spondylitis is a form of arthritis causing inflammation in the spinal joints. Paget’s disease involves abnormal bone destruction and regrowth. Although the diseases have begun to attack his internal organs the past three years, he has been able to put Type 2 diabetes, prostate cancer and kidney disease in remission.
All movement hurts. He feels pain along his entire spine from his hips up to his eyes. His thoracic spine is covered with metastatic lesions that are weakening the bone, and the interior of the bone is malformed, affecting nerves and muscles. Each day, Dennis deals with electrical sensations, numbness and burning, pulsing, throbbing, tingling, stinging agony. The only areas free of pain are his face and knees.
Unfortunately, there are no known treatments or cures for these rare diseases. Instead, Dennis has had to learn to adapt and find therapies that bring him some relief. Since he cannot lie on his back or sides without experiencing great pain and fatigue. Dennis’s recliner is very important to his overall wellness. Sitting is now the only way his body can fully relax.
Medications also have helped bring him some pain relief, though it took him nearly a decade to obtain the correct ones. Dennis takes a nerve medication to relieve the spinal pain, a central nervous system analgesic for the radiating and outlying pain and an opioid for residual pain. This allows him to be productive and feel more comfortable; he believes his life would be impossible to maneuver without taking these carefully monitored and properly dosed medications.
He has become proficient at distinguishing between damaging and non-damaging pain. He knows which movements, like lifting heavy objects, cause permanent damage. Dennis also has learned how to handle non-damaging pain so that he can participate in life. While most would think Dennis looks normal and can communicate effortlessly, everything from making a phone call to doing household chores causes him delayed onset muscle spasms, or DOMS. These horrific spasms leave him completely debilitated for various lengths of time.
Today, Dennis is housebound and nearly bedridden in the advanced end-stages of both conditions. Art, drawing, wanting and music help him stay busy. Breathing, stretchIng and relaxation are now exercises that keep him physically and mentally strong.
For the first 14 years of his pain journey, Dennis experienced many negative feelings, like anger, fear, anxiety and dental. He lost his wife, job and home. It took time for him to accept pain, and what he calls "the positive side of the pain cycle." Pain ultimately led Dennis to a better place. He met the physical therapist that showed him how to hold on to the "big picture." Everything that was sacred to him he had previously taken for granted: pain made him grateful for the gifts In his life.
Believing in a power larger than himself gives him the power to accept his fate and forgive himself and others for wrongs done. By letting go, he has a newfound strength in mind, body, emotion and spirit. He walked when he medically should not have been able to walk. He shared his story and became victorious over his condition. "Chronic pain has given me the opportunity to complete the greatest challenge of my life: staying genuinely happy despite constant pain."
Understanding that life is always filled with some amount of pain, Dennis wrote a book that chronicles his experiences on the road and explains the Pain Cycle and Pain Amplifier. His wish for others with pain is to believe in the power within. Believe you can move forward enjoying life and being happy again. Recognize that pain is a journey or an adventure; it will have ups and downs, but it is how we finish that truly matters.
In his opinion, the greatest problem facing the pain community is the lack of validation. He feels non-validation is actually just fear from the giver to the receiver. Pain needs to be better understood so others can empathize. On the other side, Dennis also thinks those with pain need to look at the reasons why no one validates pain and what we as a community can do to change those perceptions. Pain should not have to cost us meaningful relationships, financial security or proper care.
While he has worked with large organizations in the past during his Route 66 walk, Dennis has gained the most strength from the pain community. He felt support that only others who have undergone similar experiences could give.
This is why Dennis likes grassroots organizations run by those with pain, such as U.S. Pain Foundation, Artists in Transitions and Heroes of Healing. Not only are these groups free to join, but they also offer hope, an outlet and valuable resources.
Dennis proves that there are no limits to what we can accomplish. At 55 years, he is an inspiration, still making every day count. "I guess I see myself as ever-changing and always adapting. While I wish I had the wisdom I do now back in 2001, I am just so grateful to be where I am today. My time is limited, but my legacy hopefully will live on forever."
For more on Dennis’ journey, visit his website at WalkForHealing.weebly.com
Ehlers-Danlos Syndrome patient Ellen Smith serves as advocate for pain relief access
Ellen Smith has Ehlers-Danlos Syndrome, a progressive degenerative connective tissue disorder characterized by joint hypermobility, skin extensibility and tissue fragility. Ellen knew from childhood that she was unusually flexible and highly mobile, but thought nothing of it. She first encountered problems as a master swimmer, when she began to have excessive shoulder pain from overstretching her ligaments. To ease the pain, she would stop swimming for a week. She was once given a steroid shot, but this gave her horrific pain and made her unable to raise her arm for a month. Ellen now knows this course of treatment was the worst thing for EDS, as steroids break down collagen even further.
In 2002, Ellen had surgery for a dropped bladder. When her bladder dropped again two years later, her surgeon referred her to a geneticist for testing, and Ellen was diagnosed with EDS. Although she intuitively knew the diagnosis was right, she was shocked and sought a second and third opinion before she finally accepted it.
Classical EDS affects 1-in-20,000 to 1-in-40,000 people. Ellen’s case is severe and has worsened in the past year. She is extremely cautious in public, as the slightest touch, bump, squeeze or hug can easily dislodge her joints. Since her diagnosis, as the deterioration of connective tissue in her joints has progressed, she has undergone 22 major surgeries to help her maintain mobility. Her pain increases significantly throughout the day, and on bad days, her mind becomes foggy. With compromised oxygen levels reaching as low as 45%, Ellen relies on a BiPAP SIT (i.e., a home respirator) to keep her oxygen levels within a normal range.
Maggie, Ellen’s black Labrador service dog, is her protector. Maggie helps stabilize Ellen so she can stand and walk, and brings her medicine from the refrigerator. Just six days after receiving Maggie, Ellen stopped breathing in the middle of the night, and Maggie woke her, saving her life.
Ellen has had to stop teaching, swimming and coaching. She can no longer help her husband with small home improvement projects, a pastime she once enjoyed. To the outside world it appears that EDS robbed Ellen of her life, and yet Ellen would disagree. Although she recognizes that her life has shifted course, she refuses to become emotionally paralyzed. She and her husband, Stu, live by the motto that you must enjoy what you have while you have it. She has passion for life and continues to live with hope and love.
Ellen is proactive in her therapy program. She follows an exercise regime on her bed to strengthen core muscles and uses pool therapy to jog. Because she also has a rare form of celiac sprue, a chronic digestive react disease that interferes with the digestion and absorption of nutrients from food, she follows a strict diet that prohibits dairy, soy and gluten.
Although Ellen has had severe reactions to most medications, she has found pain relief from medical marijuana, which is legal in her home state of Rhode Island. She is proud of her state for passing legislation enabling its distribution, and is an active supporter of the Gifting Program, which allows people to share limited amounts with others.
Ellen works as an advocate leader for the U.S. Pain Foundation and as a state ambassador for the Arthritis Foundation. Another organization that is particularly close to her heart is the Ehlers-Danlos Syndrome Network CARES Foundation, a group dedicated to creating public awareness and funding research.
While working with these organizations gives Ellen a sense of purpose, she finds the greatest fulfillment in connecting with other EDS patients. She understands the speculation and criticism they experience, and urges them to have hope and courage. Ellen is still a compassionate educator. She teaches people to be proactive, to be their own best advocate and to find their own answers, believing that if something cannot hurt us, it is worth trying.
With the support of her four sons, the devotion of Maggie and the unconditional love of her husband, Ellen moves forward. She lives each moment as it comes and is happy to be alive.
"I don’t want to be remembered as someone who pitied herself. I want to be remembered as person who tried, a person who made a difference, lived life and found joy."