Live Yes! Connect launched: : 2017
Live Yes! Connect Facilitator: Suzy Type of Arthritis: Systemic Lupus Erythematosus & Osteoarthritis
About this Live Yes! Connect Group:
My vision for the Greater Richmond area Live Yes! Connect is to create a community that fosters education, empowerment, advocacy, strength and caring – and most important, a place to celebrate life together – for those with arthritis and other rheumatic conditions, and their families.
I was diagnosed with systemic lupus erythematosus in 1969, and have had my ups and downs with it ever since. Aside from the period preceding my diagnosis, I had the worst flare of my life in 1983, and spent a year on Social Security Disability before returning to work part time, eventually returning to full time work. This experience led me to share my story in a memoir. I decided to retire in July 2016 at the age of 61 – before I reached the need to “medically retire.” I’ve lived long enough on a variety of mediations to now have steroid-induced osteoporosis as well as regular old-age osteoporosis, and had a successful hip replacement almost six years ago.
I earned a Master’s in Library Science from Syracuse University in 1978, and stumbled into a career as an academic librarian. I spent most of my life in Upstate NY before eventually settling in Virginia (after a brief stint in Louisville, KY). I love helping people find the information they need for whatever problem they might have. When I became a library administrator, I also discovered how much I enjoy mentoring people, encouraging others to be the best they can.
I have always described my illness as something I “live with” not something I have, or that has me. I see my retirement as the next chapter in a life dedicated to helping others with arthritis and other rheumatic conditions learn how best to do the same. I have plans to continue the story I began in my memoir in the form of a blog (more on that as it happens!).
A figure skater into my twenties, I’ve abandoned the ice for more gentle exercise in the water, including aqua yoga, as well as chair yoga, and walking (for me mostly indoors or in the evening, since I need to avoid the sun). I enjoy knitting when the arthritis in my hands cooperates, as well as creating gourmet meals.
I married in 1995 – more than twenty years into living with lupus – and gained three stepsons I never expected to have. I’ve discovered how important it is, and how difficult it can be, for caregivers to understand their loved one’s condition, never mind to be involved. Helping to “educate” my husband and children has helped put me onto this path to helping other friends I haven’t met yet.
As someone who has lived with systemic lupus for more than 45 years, I would like to help others who have arthritis, as well as those who care for someone with arthritis. I am passionate about the need for health care providers to better understand the patient perspective, as well as for patients to have the knowledge and tools to best manage their disease as partners with health care providers. I believe individuals with chronic conditions have much to learn from doctors, and doctors have much to learn from patients. The more we work together, the better we can serve each other today – and hopefully also provide new insights for other patients and doctors in the future.
I retired in July 2016, after nearly forty years as a librarian, and have more time to commit to patient advocacy. I see my personal experience living with a form of arthritis, my writing and speaking ability, and my professional skills as a researcher and administrator all coming together in this next phase of my life to help others.
We can all learn from each other, and I hope you’ll join me on the journey to living the fullest life possible.
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