LEARNING TO LIVE WITH LUPUS IN A POSITIVE AND PRODUCTIVE WAY

 In Links to Lupus News, Story Sharing Project

By Kay Mimms

For years, probably my whole life, I suffered with various symp¬toms that could have been related to lupus. My symptoms included cold hands and feet and sensitivity to cold (since I can remember); painful, sore, and swollen joints and muscles (since the 1960s); low blood count (1960s); extreme redness of eyes (since 1975); thyroid condition (since 1988); itchy and dis¬colored blotches on skin (1990s); blistering after short exposure to sun (1990s); chest pain with each deep breath (1990s); itchy, flaky scalp (2005); hair loss (2005); loss of appetite (2005); and extreme fatigue (2005).

All those years, doctors did an excellent job of treating my symp¬toms; however, many times either the old symptoms would reappear, or I’d get new ones. My dermatologists and ophthal¬mologist even recommended evaluations for lupus twice. I followed their recommendations, but the results were negative. I discovered later that I didn’t have enough markers – the magic number being four symp¬toms happening at the same time – to determine a definite lupus diagnosis. I just continued seeing doctors whenever conditions warranted such. There¬fore, I was able to continue my career in education as the doc¬tors tried to keep my symptoms under control.

I finally received a definite diagnosis in February 2006 at the age of 59. It almost came too late. After my primary care physician diligently researched the few facts available about lupus, my symptoms, and 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 that produced pinkish mucous. These additional symptoms led me to the hospital emergency room where attendants discovered cackles in my lungs and an elevated troponin level. This made them suspect pericardial and pleural effusion*. I was admitted to the hospital. Very early (around 2:00AM) the next day, I experienced acute respiratory distress, coughing up blood, loss of consciousness, hypotension, and presumed seizure. The medical staff ordered a respiratory code (breathing and possible airway blockage emergency), blood type and cross, intubation, and sedation. I remained in ICU, intermittently 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 occupational, physical, and speech therapy as an in-patient. There were also months of in-home and out patient physical and speech therapy. Thanks to God, my husband, daughters, family, friends, physicians, and other medical personnel, I survived a near-death situation.

Lupus is incurable and can be life-threatening. The symptoms are varied. The diagnosis is usually very difficult to accomplish. One never knows when a “flare” might occur. The treatment plans can range from a few medications and doctor’s visits to in-patient health care. The prognosis can range from fairly good health to death. Most people know very little about lupus, and many are misinformed. Many lupus patients don’t look sick, and it is difficult for others to understand what lupus patients and their families endure.

After my condition stabilized, my husband, Cecil, and I began working toward increasing lupus awareness and raising funds to support the lupus community. Our volunteer work includes participating in area support groups, speaking at meetings of local organizations and churches, and representing the Lupus Society of Illinois (LSI) at various health fairs. We also serve on the LSI-sponsored Southern Sub¬urbs Illinois Lupus Walk Committee, which hosts a walk during or after May’s Lupus Awareness Month. I am the Captain of team K’s Hope for a Cure.

I tell about my struggles, fears, losses, and victories in my first book – FIGHTING LUPUS BATTLES – Hope for a Cure. The book includes more than twenty true stories about real people who are living with the effects of this mysterious and unpredictable disease called lupus. With medical commentary from two of my doctors, as well as general educational information about the lupus disease, the book was written to help raise awareness, broaden knowledge, encourage understanding and compassion, improve provider/patient communication and relationships, and promote research. I’ve just finished my FIGHTING LUPUS BATTLES sequel. It is scheduled to be available in 2019.

Today, my condition is fairly stable. I awake each day being thankful to God for three main reasons: I am still alive; I can usually function independently; and I have loving, caring family members and friends who support me. 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 be as healthy as possible, and I leave the rest to God.

*(fluid around the heart and lungs as defined by Wikipedia, The Free Encyclopedia)

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