My Patient Story
Congressional District: WA04
Chronic Pain, Rare Disease
Issues and Challenges
Becky has encountered: Access to Expert Providers, Geography, Out of Pocket Costs
In 2003 I was 36, healthy, happily married, and a Labor & Delivery nurse with babies on the brain. One Sunday afternoon while my husband and I walked on the beach, he had 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 Ehlers Danlos Syndrome type 4 (Vascular).
From 2003-2006, I cared for him through numerous bleeds, dissections and hospitalizations, and on 11/11/2006 he died from an aortic dissection.
5 months later, still grieving & exhausted, I developed disseminated shingles while on vacation in Mexico. It damaged my nervous system badly, causing Central Pain Syndrome(CPS)/Complex Regional Pain Syndrome (CRPS) and subsequently intractable pain.
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 to me. 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 nothing, 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.
From that first 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 Lisa Davis Budzinski, to research, educate & advocate for CPS & Intractable Pain patients and share support within the rare disease and chronic illness communities. Along with our website and social media presence, we advocate at events in person and on the web.
Over the past 14 years, we've seen little forward momentum, and even a backslide, in CPS and Intractable Pain care & treatments. Recently, opioid hysteria has led to altered prescribing guidelines, making it 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 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.
" Helping Patients Thrive Not Merely Survive!” - Becky Brandt: Co-founder Central Pain Nerve Center
AFFORDABILITY: The cost of becoming legally disabled is sky high! The loss of your health, career, financial assets, and home can make your future outlook quite bleak. We have to find better ways to manage chronic illnesses that don’t bankrupt families in their time of crisis. (Cost & Affordability)
ACCESS TO EXPERTS/LOCATION: Pain care differs vastly from patient to patient in different locations across the country. Patients who live in rural areas often lack access to treatments offered in larger metropolitan areas, such as Ketamine.
What if insurance companies worked together to create access, rather than limit it? Offering respiratory access for patients who struggle to find the treatments they need within their own insurance systems boundaries? And no penalties for going out of the system to obtain the best care for each patient?
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.