Hi, my name is Kay. After suffering with various symptoms at different times throughout my life, I was diagnosed with lupus in 2006. My diagnosis almost came too late because I was very close to death before a definite diagnosis was secured. Thanks to God, my husband, daughters, family, friends, physicians, hospital staff, and rehabilitation staff; I survived a near death situation. *
My lupus story has been featured in three newspapers: The Southtown Star – September 9, 2009; the Chicago Defender – May 21 – 27, 2014; and the Daily Southtown – August 6, 2015. I have written articles for the Lupus Society of Illinois, the 2012 winter issue of The Well magazine, and the Spring 2017 issue of neaToday for NEA-Retired Members. I’ve been blessed to share my story on three talk shows: Christian Coaches Huddle – Blog Talk Radio with Donna Brumfield, Senior Talk with Clara Hubbard, and WVON’s Community Health Focus Hour with Susan Peters.
In the process of learning to deal with lupus, I have discovered a new “calling”: to work toward increasing lupus awareness and to help raise funds for research that would lead to more efficient diagnostic procedures, better treatment plans, and eventually a cure. My experiences have inspired me and my husband, Cecil, to do volunteer work with various lupus organizations, mostly the Lupus Society of Illinois (LSI). We participate in area support groups (Hazel Crest’s The Lupus Connection, “Living Well” with Lupus Support Group, and Trinity United Church of Christ’s Lupus Support Group). We represent LSI at various health fairs and speak at meetings of local organizations and churches. We have also served on two LSI-sponsored committees:
- Southern Suburbs Illinois Lupus Walk Committee, that hosts the Southern Suburbs Illinois Lupus Walk during Lupus Awareness Month in May. I am the Captain of team K’s Hope for a Cure.
- South Side Lupus Organization, that hosted the Holiday
Dreams – Cure for Lupus Dinner Dance in December.
My rheumatologist, Dr. Rosalind Ramsey-Goldman, conducts several lupus research studies at the Northwestern University in Chicago. I am participating in some of them. These are some of the studies in which I have participated: Fatigue and Lifestyle Physical Activities and SLE Study; SOLVABLE Heart and Bone Study; study examining the influence of lupus on the development of cardiovascular disease and osteoporosis; Systemic Lupus Erythematosus International Collaborating Clinics (SLICC)’s Registry for Atherosclerosis in SLE; and A Genetic Risk Profile in Longitudinal SLE Cohorts. I’m also involved in studies with the Arthritis Research Center Foundation National Data Bank for Rheumatic Disease, and 23andMe DNA Testing. In 2017, I joined the Research.forME Registry, sponsored by the Lupus Foundation of America.
Thank God that today my condition is stable. 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 to God 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 and learning to live with lupus in a positive and productive way. I try to do what I can to stay healthy, and I leave the rest to God.
*You may read about my story at www.lupusil.org under Programs & Services (Living Well with Lupus Story Sharing Project – I AM STILL ALIVE). The Well Magazine at http://www.joomag.com/magazine/the-well-magazine-winter-2012/0857719001356974974 on page 8 also has a copy of my story. Learn about more lupus warriors and our journeys in my books, FIGHTING LUPUS BATTLES – HOPE FOR A CURE andFIGHTING LUPUS BATTLES – Living, Hoping, Searching, Climbing, Researching for the Cure. Copies of both books are available online at www.hiltonpub.com, amazon.com and in some local libraries.
Please do not forget today is another opportunity to vote for me for Best of LI Life Coach https://bestof.longislandpress.com/voting/#/gallery/?group=330484
