Using Spondylitis.org’s Advocacy tool tonight, I drafted and sent an email to my congressional representatives in just 60 seconds to advocate for the passing of the Advancing Research for Chronic Pain Act, bill S.5041, introduced by U.S. Senator Tim Kaine on July 21 with bipartisan cosponsors and support. If passed, the bill would direct the … More Advocating for Chronic Pain Research
“Daddy, daddy, I want pineapple, please?” My three-year-old daughter has recently become obsessed with Costco’s fresh pineapple spears soaked in coconut juice. I’m a proud papa when pineapple is the preferred snack, so I gladly grab a new jar from the cabinet and twist the lid to try and open it. Nothing. So, I grasp again and put my whole forearm … More Connective Tissue and the Pineapple De-Back-le
Photo by José Boj on Unsplash Step 1: The Specialist Carousel How many medical specialists does it take to treat a chronic pain patient? Long before obtaining an autoimmune diagnosis and investigating biologics, I pre-gamed with an extensive group of specialists. After a hip injury in 2002 sent me to physical therapy, it started a specialist carousel that lasted the next 22 years before I received a diagnosis of axial spondyloarthritis (AS). Although I can’t remember them all, I saw approximately seven to eight massage therapists, ranging from deep tissue to myofascial to craniosacral, six to seven physical therapists, three … More Biologics Part 1: Pre-Gaming with Specialists and NSAIDs
Photo by Ty Tomlinson on Unsplash As I lie on my back on an exam table, electrocardiogram wires entangled across my wrists and ankles, I scan the room of my new rheumatologist for clues to his methods. This is the second specialist I have seen in over a year after receiving a diagnosis for a second joint disease, coupling my hypermobile Ehlers Danlos Syndrome (hEDS) with a fresh Spondyloarthritis (SpA). On the walls hang the standard doctoral certificates, artwork of joints describing how they function, and an unorthodox shadowbox with an aged and … More Dysautonomia and the Stress Test
Photo by Illia Panasenko on Unsplash The Bedtime Routine 9:30 p.m., an hour and a half into the bedtime routine, and my three-year-old daughter asks me, “Are you happy, daddy?” I lie sideways on top of a three-inch thick mat next to her bed that is only long enough to support my head to my … More Parenting Through Pain
Rainbow Sidewalk Chalk by Alex Jackman on Unsplash The first Pride parade I attended was in Seattle in the early 2000’s. At the time, I was a Kansas college graduate that traveled across the country to explore creative writing in the grey Cascade mountains of Washington, and to discover an identity buried within me for … More Invisible Pain: Pride Edition
Photo by Eric Prouzet on Unsplash 3:58 a.m., a Wednesday, 2004. I’m 25 years old. I awake to a painful electric current that vibrates from left shoulder blade to upper back, then neck, and lands inside my left temple. The temple starts to throb. When I brush my fingers across it, I feel the blood … More A Day in the Life with Chronic Pain
Summary: Diagnosing the causes of chronic pain can be significantly delayed for patients, sometimes for years. Read about David’s experience at an imaging clinic obtaining a long-awaited diagnosis after almost thirty years of managing pain. As a nurse glides ahead of me through the clinic, I feel an intense, interior wind drag my left leg … More Delayed Diagnosis
Invisible Pain 