May is Lupus Awareness Month: 21 years Reflection

To me Lupus Awareness Month is not only about bringing awareness to this mysterious disease but so much more. As a 21-year lupus survivor, it is a time of reflection. In my early years with lupus I fought the disease and the fate of what I was told the disease could become. I did not want to be consider sick so I separated myself from any association with calling lupus an illness or disease; it was a condition I live with and still believe. I did not want to attend support groups or fellowship with others who had lupus even at the suggestion of my medical team and mother. I believed I will be healed vowed to live a healthily life and just lived. I knew I had a whole life to live at the time high school, college, marriage, and children. So that’s what I strived after. If you asked me at 16 when I lupus attacked my kidneys causing End Stage Renal Disease what I wanted my life to look like at 32 I would not have an answer. You see my perspective of life ended at 28. I don’t know why but it just did. Before the age of 28 I had my whole life planned out.

…I would go away to college somewhere far away from Los Angeles, CA. Become a pediatric Physical Therapist and married by 21 to an amazing man…about 6’2” athletic build with gorgeous eyes, dimples, and a smile that makes me melt. We would have four beautiful children and live in a big house with lots of windows. As I put my fantasy in a frame and place it on my apartment fireplace mantel I fast forward to May 2017….

At 32 year’s old, my 21 years living with lupus is equivalent to a modern-day lifetime; unfortunately due to the times. While I have achieved, much I don’t have everything my 16-year-old self once fantasized about but I’m close. I moved far away from home twice…check…. earned two degrees…check…. patiently waiting for Mr dimples and a smile to make me a wife and mother of his children…crickets! With all my achievements, I did all this while living through the loss of my kidney’s, physical pain, depression, rejection, low self-esteem, loneliness, self-doubt, and being disable (by medical definition). Despite it all I KEEP MOVING. My ability to detach myself from lupus has been my greatest gift in living with the condition. My faith makes me superhuman. Since day one I believed I would live out every aspect of life. For the most part, I have and believe there are some more chapters to be filled. I am currently in a season of life where I am dreaming BIGGER!! I now visualize myself at 80 years old sharing my wisdom and life stories with my grandchildren. As I have grown with lupus I have learned not to be afraid of it but to take each day one at a time. I talk about lupus more now because I have learned what works for me and what sends me into a flare. As I read other lupus stories, I am aware we all experience the condition differently and cope differently as well. My family and friends know two things about me I love my independence and being busy. Take those two things away and I will fight to get them. Before my life is consumed with being a wife and mother, I have the freedom to do the two things I love and have found my career in fitness and entrepreneurship allows me to do that….a far stretch from the Physical Therapy aspirations.

My faith to live despite lupus does not negate the fact the disease needs better prognosis, treatments, more efficient diagnosis, and ultimately a cure. Women, men, and children are suffering and dying due to outdated treatments and lack of clinical knowledge. Minorities are at higher risk for developing lupus and African-American women are the largest population diagnosed. While lupus can be mild to some long-term symptoms can become, life threatening if not properly managed. There are dangers in not knowing if you are at risk for lupus as well as living undiagnosed and untreated with symptoms of the disease. The first part in living a long and active life with lupus is knowing your health status of lupus. I challenge you this month to learn about lupus. Educate yourself about the signs, symptoms, and who is at risk for lupus. Talk to your family and love ones about the disease and make them aware. Please visit the Lupus Foundation of America www.lupus.org to learn more.