“If I could do anything as a Health Activist…” and had no constraints or limitations. Here is where I toss out the "prompt" Why waste time or energy imagining what my life can't be? When I can use the same time to create "vision boards" or meditate towards what my goals are and what I can do and be. This life of mine may not be perfect but it is my "Lupus Style Experince" and I am thriving despite living with a chronic condition for over 30 years.
I would love to create and lead “Lupus Style Experience” workshops and travel around the country (make that world!) from big cities to small towns to share the “Lupus Experience” with people who normally would not be able to have access to the educational or wellness resources that a “Lupus Experience” would cover everything a lupus patients needs to know. The workshop would start with a conversation about coping with the diagnosis and stages of illness (flare to remission to a flare to remission again) to living with lupus. Stress management will be discussed as the group each receive a foot massage and pedicure. Depending on the location of the “Lupus Experience” different exercise classes could be offered Yoga, Tai Chi and Low Impact Aerobics or Movement classes (aka No Pole Dancing), because those with Lupus Style like to strut their stuff. The purpose and goal of the “Lupus Style Experience” would be to assist the lupus patients discover the beauty within them and their own ability to help manage this condition called lupus. The “Lupus Style Experience” is more than a support group it will be start as a half-day workshop that concludes with nutrition awareness / cooking class and a shopping trip to the market. The patients go home with more than information and painted toes, they each receive healthy groceries to make the recipes at home. When I have the time and find the "angel investor" these prgorams could change the world one lupus patient at a time. (Have you heard of The Butterfly Effect?)
Thinking about my goals as a Health Activist, if I could do anything it would be to share what I know to be true to as many people as possible. That truth is “lupus awareness is fun but lupus is not.” If there were no limitations, I would attend more Alliance for Lupus Research “Walk with Us to Cure Lupus” events and I would have a “Lupus Awareness is Fun!” team in every city. I would participate and hope to speak at health conferences. I would be able to speak and share my story of transforming from patient to patient/advocate to whoever would listen. I want to continue to engage and connect within the lupus patient community. Whether speaking to a member of Congress on Capitol Hill or tweeting a new “lupie” online, I feel blessed and appreciate the gifts of lupus.
At some point my goals for my Health Activism became my reality. I am doing what I can as best as I can. To that end I am challenging the actual constraints and limitations to live with “Lupus Style”. I am proud to share that I have been invited and will be participating at the 2013 TEDMED 2013 ‘Great Challenges Day” on April 19th in Washington, DC. I am thinking big and living with flair, who knows what tomorrow will bring but I look forward to it.