Living in Constant Pain – Where is the help?
Congressional District: WA04
Chronic Pain, Neurological Disease, Rare Disease
Issues and Challenges
Becky has encountered: Access to Expert Providers, Rare / Underserved Disease, Disability
In 2003 I was 36, healthy, happily married, and a Labor & Delivery nurse. One Sunday afternoon while my husband and I walked on the beach, he developed a spontaneous femoral artery dissection & internal bleed. As my adrenaline kicked in, I hoisted him up by his waistband, put his arm around my neck and started the half mile trek to the car. With a rhythmic 3 legged hop, step, and drag, we made it up the boat ramp, into the car and sped to the emergency room. After an airlift to Seattle, and emergency surgery for a femoral artery bypass graft, he was diagnosed with Vascular Ehlers Danlos Syndrome.
This was my first “Advocacy experience” outside of nursing, and I threw myself into learning all I could about this Rare Disease, becoming my husband's biggest advocate. I’ll never forget the moment I found the “Ehlers Danlos National Foundation” website. In 2003-2004, it was just a shell of what it is today, but in that moment, I was no longer alone, which meant the world to this tired, scared caregiver.
We fought his disease from 2003-2006, through numerous bleeds, dissections and hospitalizations, and on 11/11/2006 he died from an aortic dissection secondary to EDS. I knew my advocacy would continue, but had no idea how it would change.
5 months later, still grieving & exhausted, I developed disseminated shingles while on vacation in Mexico, during what would have been my anniversary. It damaged my nervous system badly, causing Central Pain Syndrome(CPS)/Complex Regional Pain Syndrome (CRPS) and subsequently intractable pain. In under a year I went from Nurse & wife t0 patient advocate, then rare disease patient. When I couldn’t return to work, I slowly started to lose everything I’d worked so hard for, including my home. My parents took me back in, which was an enormous benefit. My usual upbeat & optimistic outlook took a beating as drug after drug failed to bring adequate pain relief. I was losing this fight!
After months of struggling, my pain management specialist suggested a new drug approach that helped me just a little, which was better than anything to this point and it gave me a glimmer of hope! My lucky streak continued when I found a Yahoo Group for CPS/ Thalamic Pain Syndrome. Suddenly I was no longer alone and felt driven to advocate for CPS patients like myself as well as EDS patients like my husband. From that first yahoo support group, the Central Pain Syndrome Foundation was created, offering CPS education & resources for patients, caregivers, loved ones and healthcare providers. Later, I Co-founded Central Pain Nerve Center with patient Lisa Davis Budzinski, to research, educate & advocate for CPS & Intractable Pain patients like us and share support within the rare disease and chronic illness communities. Along with our website and social media presence, we started to advocate at events in person and across the web.
Over the past 14 years, we've worked hard to build up a strong CPS/CRPS/Intractable Pain community, but we’ve seen little forward momentum, and even a backslide, in CPS, Intractable Pain care, & treatments. Recently, opioid hysteria has led to altered prescribing guidelines, making it even harder for chronic & intractable pain patients to obtain opioids for pain relief, even if they had previously been on a stable opioid dose that clearly improved their pain and quality of life. IV Ketamine is the latest treatment to show promise for CPS/CRPS pain, but it is far from mainstream and most insurance companies don't cover it yet. Several medical facilities in larger U.S. cities offer ketamine infusions, but the majority of pain patients don’t have access to them yet,&/ or can’t afford the out of pocket expenses related to treatment. The few lucky patients who've tried it realize it’s a game changer, but most of us are left waiting, losing day after precious day to intractable pain.
Until there’s a cure, we will continue to fight for new and improved CPS pain treatments that are accessible to each and every patient who needs them. And we'll stand with intractable pain patients who use opioids responsibly for pain relief and shouldn't be penalized for the behavior of others.
My Motivation and Inspiration
Living Life in Constant Pain, with the possibility of someday being pain free again is a motivating factor like no other! And Our patient groups on Social Media are a daily inspiration.