I am a patient advocate and educator who has been helping patients empower themselves to take an active role in their health care since 2003. I experienced what I now know were menstrually-triggered Migraines during puberty. I was able to manage these with over the counter medications for many years. On a cloudy December 9 morning in 1996, my life changed forever. I slipped and fell on a patch of black ice in my driveway, hitting my head, hard. I sustained a traumatic brain injury or TBI.
In addition to daily chronic head and neck pain and having Migraine disease, I live with idiopathic intracranial hypertension, a cervical spine fusion, depression, hypothyroidism, Raynaud’s phenomenon, Sjogren’s syndrome and some autoimmune connective tissue disease. In tremendous pain and still experiencing cognitive symptoms, I went online to see if I could find some answers. Reaching out to a number of online support groups, I met patient advocate Teri Robert who at the time was the Headache and Migraine Guide at About.com. I became an active member of the discussion forum, and in 2005, I became a moderator under Teri’s tutelage and guidance. In 2007, I joined HealthCentral’s Migraine Community as an Expert and Community Manager.
Because I didn’t think of myself as being disabled, it never occurred to me to file for Social Security Disability, SSDI. Before I applied for SSDI, I wanted to make certain I was truly disabled. To convince myself, I took a part-time job, which threw me into pain cycle that took weeks to break. When the judge declared me “fully disabled” it wasn’t necessarily a happy moment, just a necessary step in moving forward.
In April of 2011, in conjunction with the National Headache Foundation, I started the first, local support group for Migraine and headache sufferers in Western New York – the Western New York Migraine and Headache Disorder Support Group. I continue to read, research and attend medical conferences to remain current in Migraine and headache disorders. I have also earned continuing education hours in this area from the American Headache Society, the Annenberg Center for Health Sciences and the Center for Health Care Education, the Penn State College of Medicine and the Primary Care Network.
Supporting people with Migraine and headache disorders is a privilege and honor for me. I feel support, compassion and understanding are vital components in health care. I live in Western New York with my 17 year old son Sam, a junior in high school.