Kay Mimms
Meet Kay Mimms from Matteson, IL. Kay was diagnosed with systemic lupus erythematosus 17 years ago in 2006.
Kay’s Story:
I was diagnosed with Systemic Lupus Erythematosus (SLE) at the age of 59 after suffering with various symptoms throughout my life: cold hands and feet and sensitivity to cold; painful, sore, swollen joints and muscles; low blood count; extreme redness of eyes; thyroid condition; itchy and discolored blotches on skin; blistering when lengthy exposure to sun; chest pain with breathing; itchy, flaky scalp; hair loss; loss of appetite; and fatigue.
My diagnosis almost came too late. After my primary care physician diligently researched the few facts available about lupus, reviewed my symptoms, and examined my laboratory results, he referred me to a rheumatologist who specializes in the care of lupus patients. However, before my scheduled appointment, I experienced nausea, more pain and swelling, difficulty in mobility, and deep coughing, which produced pinkish mucus. These additional symptoms led me to the hospital emergency room where attendants discovered problems with my lungs and heart. The doctors suspected pericardial and pleural effusion (fluid around heart and lungs). I was admitted to the hospital and then treated with blood thinners, which probably caused me to almost “bleed out”. I ended up in ICU, intubated and sedated, for 65 days. When I was finally weaned from the ventilator, I was unable to walk or talk and had to complete three weeks of intensive therapy (occupational, physical, and speech) as an in-patient. There were also months of in-home and outpatient physical and speech therapy. Thanks to God, my husband, daughters, family, friends, physicians, and other hospital and rehabilitation staff, I survived a life or death situation.
Today, I try to express gratitude for every day that I am still alive and am able to take care of myself. I awake each day being thankful that even though I have painful and sore joints and find it difficult to walk sometimes, even though my voice is raspy and I am not able to sing like I used to, even though I still have a mild productive cough, even though I fatigue easily, even though I forget or may not fully understand things at times, even though I second-guess most things I do, even though I have to take lots of medications, I AM STILL ALIVE.
Learn about more lupus warriors and our journeys in my books. My first book, FIGHTING LUPUS BATTLES – HOPE FOR A CURE, published in 2015, consists of true stories that were written by eighteen lupus patients, our relatives, and two of my doctors. The stories describe the struggles, losses, and victories experienced by us and were written to inspire, encourage, and increase awareness.
In my second book, FIGHTING LUPUS BATTLES – Living, Hoping, Searching, Climbing, and Researching for the Cure, published in 2019, you’ll find more personal stories from lupus warriors and information about lupus research from scientists and sponsors of lupus research. Both books are available for purchase by contacting me at kshopeforlupuscure@gmail.com. Some public libraries in the Chicago Area have copies also.
What's one piece of advice you would give to someone who is newly diagnosed?: I feel the newly diagnosed lupus warrior should be advised to study their condition. One should pay attention to his/her body and educate self by searching for information at very credible resources.
What is one misconception you wish you could change about lupus?: Lupus is a minor condition; it is like cancer or HIV/AIDS, but not as important as they are. Those misconceptions need to be dismissed. Lupus is a chronic autoimmune disease. It is incurable at this time, unpredictable, complex, and potentially life-threatening. It is not contagious. It is not related to cancer or HIV/AIDS.
What brings you joy?: I have experienced several trials and triumphs during my lupus journey, and I feel joy when I see and hear groups respond positively when I say, "and now I line dance".
You can learn more about Kay on her website: kaymimms.com