Still Alive: Kayrene Mimms, Lupus Warrior

 In Links to Lupus News, Story Sharing Project

By Kayrene Mimms

In our individual lives it’s easy to forget how similar we really are. (I’m not sure, but I think if each is stated, the verb would have to be singular). We all have relationships, delights, feelings, faults and sorrows. We all have bodies that protect hearts that beat and sometimes, whether or not we’re prepared, must keep our spirits strong.

For Kayrene (Kay) Mimms, that strength has been tested for many years. Suffering without answers through symptoms of painful joints, swollen muscles and chest pain – to name only a few – passed with no relief until the age of 59, when she was diagnosed with Systemic Lupus Erythematosis (SLE). But her diagnosis almost came too late.

Before her first appointment with a specialist, Kay’s symptoms worsened. She developed a deep cough, nausea and difficulty in mobility, landing her in the emergency room where doctors discovered problems with her heart and lungs. For 65 days she remained in intensive care, intubated and sedated; but something in Kay kept fighting. When she was finally free of her ventilator, unable to walk or talk, she began three weeks of intensive in-patient therapies (occupational, physical and speech) followed by months more of them at home.

Supported by her faith and those close to her, Kay overcame a near-death lupus flare but remains grateful for each day she has been given. And moreover, she discovered her new calling: advocating for lupus patients and raising awareness.

Now a member of the Lupus Connection Support Group – a group she lead led for several years – Kay, in her own words, seeks to help “solve the cruel mystery of lupus and alleviate its devastating impact on millions of lives.” An estimated 65,000 people in the state of Illinois alone have been diagnosed, yet still there are more questions than answers and few solid treatments available. There is no cure.
Lupus can be difficult to diagnose because symptoms can be wide-ranging and happen over long periods of time. The body essentially begins attacking healthy cells and does not discriminate; the brain, skin, lungs, and kidneys – all parts of the body can be at risk. And it can happen to anyone.

Those diagnosed are 90% female, but patients can be any ethnicity, any gender, any age. A family member or a close friend, even the stranger on the bus or in the store could be fighting a silent battle with this complex and often frustrating disease.

Part of Kay’s ongoing mission has been giving a voice to these people; she even published a book: Fighting Lupus Battles: Hope for a Cure (True Stories of Lupus Warriors). Lupus patients from a multitude of backgrounds, specialized medical professionals, lupus caregivers and patients’ families all contributed to the project to illuminate much more than the cold medical facts. It gives context to lupus in the everyday world in which we all exist.

Stories have now been told of the people surviving harsh and sometimes unreliable treatments; the people dedicating their lives to healing and research; the family members who spend endless hours of worry comforting their loved one in any way they can. From her own fight, she has tapped into the wellspring of voices seeking a space to be heard.

In addition, Kay frequently volunteers with the Lupus Society of Illinois and is captain of “K’s Hope for a Cure”, one of the top teams in the yearly Southern Suburbs Lupus Walk. Her husband, Cecil, Chair of the South Side Lupus Organization, supports her as they raise funds for patients in need. This disease hasn’t stopped Kay from living. She maintains a schedule of regular exercise, relaxation and meditation. A woman of infallible faith, Kay spends most mornings reading the Bible and other inspirational works, awaking each day thankful to God that her condition is currently stable. Though a flare can happen at any time, she is constantly committed to furthering the improvement of diagnosis, new treatments and improvement of patients’ quality of life by spreading lupus awareness any way she can. She says:

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 no longer 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 a lot of medications, I AM STILL ALIVE.

Kay truly is a warrior who inspires all of us to learn more about each other, our struggles and the reality of what it takes to battle a chronic illness. She will have lupus for the rest of her life, but she also has her faith, her voice and her indomitable spirit that inspires us all to fight.

For information on Kay’s Book on Amazon, Fighting Lupus Battles: Hope for a Cure (True Stories of Lupus Warriors) click here

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