I awake in bed to a sudden gasp for air. My throat lunges forward to inhale the night for a breath, as if I am bursting through the surface from a deep-water dive, desperate for oxygen. “David, are you ok?” I have awakened my wife in the next room down the hallway. “Is it a … More The Comorbidity Series: Sleep Apnea – Part 1
Photo by Deividas Toleikis on Unsplash This week for #PainAwarenessMonth, the U.S. Pain Foundation released an article explaining some of the key gaps in research for the pain community, and how the Advancing Research for Chronic Pain Act (ARCPA) can help close some of those gaps. In 8 Ways Better Policy Could Improve Life With Chronic Pain, Cindy Steinberg explains how ARCPA can help improve access to data and research … More Painful Gaps in Research
Photo by Owen Michael Grech on Unsplash This week I took the American Chronic Pain Association (ACPA) Chronic Pain Access and Care Experiences Survey. The ACPA is using the survey to collect data from chronic pain patients to better understand their realities of accessing care, patient-clinician relationships, pain-related stigma, treatment barriers, and the unintended consequences of healthcare policies affecting pain management. The survey is intended for educational and … More Access to Care: An ACPA Survey
Photo by Angelica March on Unsplash “Thank you for being a part of our network, sir. Would you like to join the auto renewal plan?” “Well, maybe, but—” “Ok, great, yes. We can do that for you. Let me sign you up.” “Um, ok, but what I really need—” “Can you confirm your name and address for me again, sir?” “David… 88888.” … More Biologics Part 2: The Specialty Pharmacy
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 National Institute of Allergy and Infectious Diseases on Unsplash “David, open your eyes.” The medic is calm but stern as he tries to speak over my guttural wails and a commotion of sirens, swinging doors, and patient groans. “Can you hear me, David?” I lie on a stretcher in the hallway, pressed up against the wall as doctors and nurses rush by, my contorted limbs thrashing underneath stretcher belts and grasping for air. “Nurse! Nurse! We need help, please? We were told a room was ready when we called ten minutes … More Autoimmunity and the ER
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 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
