I have lived with various lupus-like symptoms since the age of four; but it was not until I was age 59 that I received the definitive diagnosis of systemic lupus erythematosus or “SLE.” Unfortunately, before I could get in to have the rheumatologist create my treatment plan, things got worse. My diagnosis almost came too late. Two weeks after being diagnosed, I ended up being sedated and intubated in the ICU for over 60 days. When I could finally be moved from the ICU to a regular hospital room, I couldn’t walk, couldn’t stand up, and could barely talk. During my one-month in-patient rehab, I learned to walk with a walker, used techniques that helped my speech, navigated two stair steps, cooked from a wheelchair, walked on carpeting, transferred from the bed to the wheelchair, and did many other things that people take for granted. For several months, I did more therapy at home and then as an outpatient. Thanks to God, my husband, daughters, family, friends, primary care physician, hospital care providers, and rehabilitation staff, I survived a near death experience.
Surviving that experience and doing volunteer work to increase lupus awareness inspired me to share my story and the stories of others who suffer the potentially devastating effects of the chronic, cruel, mysterious, and unpredictable disease called lupus. Because of my inspiration, determination, and persistence, my first lupus book was born.
Fighting Lupus Battles: Hope For A Cure, consists of true stories that were written by eighteen lupus patients (warriors) and five relatives. The book also has commentaries from two of my doctors and a list of lupus resources. I want readers to get a realistic view of what it’s like to deal with and strive to manage this disease and how every case is different. The stories and medical commentaries describe the trials and triumphs experienced by us and were written to increase lupus awareness and to encourage and inspire.
Later I wrote a sequel, FIGHTING LUPUS BATTLES – Living, Hoping, Searching, Climbing, Researching for the Cure. It contains updates from my first book, real accounts from more lupus warriors, and information about the lupus research process from scientists and sponsors of lupus research. The goal for this book was to promote support, advocacy, and participation in lupus research that we hope will lead to more efficient diagnostic procedures, development of more reliable and less damaging treatments, and eventually a cure for lupus.
I created these books to help promote lupus awareness, support, and research and are meant to be educational, encouraging, and inspirational. Fighting Lupus Battles: Hope For A Cure is available at some public libraries. Both books may be purchased at hiltonpub.com and amazon.com. Purchase your copy at Amazon or Hilton Publishing Company by clicking on one of these links:
For Hilton Publishing Company:
I am so grateful that Kelli extended an invitation to submit a blog for the More Than Lupus site. As I wrote this article, I remembered that the initial print run total for my first book was 1000 copies. There are only around 300 copies left in inventory now. That’s not too bad for a first-time author. So, my spirits are lifted. Thank you, Kelli.
These days, 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 and learning to live well with lupus. I do what I can to stay healthy and leave the rest to God.
These are some of the references that I use when searching for reliable information about lupus:
American College of Rheumatology
Lupus Foundation of America
Lupus Research Alliance
Lupus Society of Illinois
National Institute of Arthritis and Musculoskeletal and Skin Diseases National Institutes of Health
Kayrene (Kay) Mimms, Lupus Warrior & Volunteer
Retired Educator, Wife, Mother, Grandmother
After a near-death lupus flare, Kay received what she calls a God-given assignment - to participate in activities that will help provide education, encouragement, inspiration, and general support for the lupus community. She and Cecil participate in area lupus support groups, health fairs, and the South Suburban Illinois Lupus Walk. Kay serves as the Lupus Liaison with the Health Care Ministry and also works with the Seniors on the Move Group at her church. She has written articles for various groups, magazines, books, and newspapers. Though Kay identifies as an introvert, she has even done presentations and interviews on radio, television, Zoom meetings, and YouTube.
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