Lupus almost took her life.
Now she lives with lupus and teaches others about the disease.
Every morning that I wake up, I thank God for being able to use the bathroom without having to wait for someone to take me.
There was a time I would lay in the bed, my bladder about to burst, but unable to walk and only able to whisper.
I would listen for the screeching sound of the blood pressure cart being pushed down the hall by the nurse’s aide. I had a catheter, but did not want to be embarrassed by dirtying my diaper.
How much longer before she reaches my room? The thought screamed in my head but my voice was reduced to a whisper. For a month I went through rehabilitation, learning how to live again after almost dying.
At the age of 59, about a year after retiring from a 32-year career as a high school teacher and counselor, I was diagnosed with lupus after suffering from various symptoms my entire life. I grew up on a farm in North Carolina, the youngest of 18 children. Since I can remember, I have been sensitive to the cold. My hands and feet would feel like cold water was running through my veins. My skin would shrivel up like a raisin.
In the 1960s, I started experiencing painful and swollen joints and muscles. Later in life, my painful achy joints made me creep along like an old lady although I was just in my 40s.
“Mom you look like an old lady,” my youngest daughter said one day.
“I feel like an old lady,” I replied.
Doctors would treat my symptoms but no one saw the whole picture. They treated me for a thyroid condition in the 1980s. A dermatologist dealt with the itchy and discolored blotches on my skin in the 90s. I endured a painful bone marrow test for cancer. I saw internist after internist and rheumatologists, but no one had an answer.
By the end of 2005, I was losing more energy and suffering more joint and body pain. My husband, Cecil, knew something was very wrong when I went to take a nap as we were preparing our house for a large Christmas family gathering and I slept for five or six hours, missing the whole party.
“That’s when I knew she was really ill,” Cecil said.
By 2005, I was not only experiencing more pain and feeling fatigued, but I also was losing my hair and my appetite.
Cecil called his cousin who is a physician and asked for referrals for physicians. The young doctor he recommended assured me that he would find out what was wrong with me. After a battery of tests, he initially thought I had sarcoidosis, a disease that causes inflammation in the lymph nodes, lungs, liver, eyes, skin and other tissues. But he wanted to do one more test.
That test confirmed that I had lupus.
What is lupus?
Lupus is a chronic and unpredictable autoimmune disease that may cause inflammation and tissue damage to virtually every organ system in the body. In lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria, and germs. The immune system goes into overdrive, and instead of providing protection for the body, it attacks healthy tissues and organs.
There is no one test for lupus. Doctors look for a combination of symptoms, family history and other “markers.” Two of my nieces were diagnosed with lupus. Both died at an early age.
According to the Lupus Foundation of America, at least 1.5 million Americans have lupus. It is believed that 5 million people throughout the world have a form of lupus. Lupus strikes mostly women of child bearing age (15-44), but men, children and teenagers can also develop lupus. People of all races and ethnic groups can develop lupus. But women of color are two to three times more likely to develop the disease.
I was relieved that I finally had a name for what I had been experiencing for years.
Almost too late
My diagnosis 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 and research of lupus patients.
I had an appointment scheduled for February 14, 2006, Valentine’s Day. The Sunday before my appointment, I was in pain and coughing up traces of blood. I stayed in bed all day, curled up in a ball. That Monday morning my husband took me to the emergency room. After an examination, doctors suspected that there was fluid around my heart and lungs. I was admitted to the hospital. I had been diagnosed with lupus a week before.
At around 2 that morning, I experienced acute respiratory distress, coughing up blood, hypotension, presumed seizure, and loss of consciousness. The medical staff ordered a respiratory code (breathing and possible airway blockage emergency). They sedated me and put me on a breathing tube. For 65 days, this was my existence in the intensive care unit.
Because of the tube, I couldn’t talk. Much of the time, I was sedated. My husband and daughter became my voice. My husband stayed by side day and night, writing down everything and questioning doctors. My daughter, Carla, a speech pathologist, realized I needed a way to communicate with the hospital staff and gave me a tablet to type my thoughts.
I was given chemotherapy.
In addition to corticosteroids, lupus can be treated with non-steroidal anti-inflammatory drugs and chemotherapy drugs.
A big challenge was being weaned from the respirator and breathing on my own. When I was off the respirator I felt like I was breathing through a straw. When I was finally weaned from the respirator, I was unable to walk or talk and had to complete three weeks of intensive therapy (occupational, physical, and speech) as an inpatient. There were also months of in-home and outpatient therapy.
Today I am grateful for every day that I am still alive and am able to take care of myself. As I lay in the bed during my hospitalization, I knew that even if I tried to call the nurses before the aide reached me, they would probably ignore my call. I could only whisper and most times the nurses would forget that fact and think that someone was just playing with the call button. I knew the aide took my blood pressure and gave me medication at 6:30 every morning, so I waited and prayed that I could hold out until she arrived.
Although the nurses couldn’t hear me, I knew God could. My mother always taught us to be grateful, no matter what your circumstance. She taught me to look at what I could do about it. You do what you can and leave the rest to God. He will put things around you that will give you what you need. If you die, you die. There’s an eternity after death. So it’s still alright. But I decided that I was just not going to lie down and let lupus take me over.
Thanks to God, my husband, daughters, family, friends, doctors, and hospital and rehabilitation staff, I survived a life and death situation.
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 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.
And I am living with purpose, using my experience to help others.
A retired educator, Kay Mimms is a passionate advocate for lupus awareness and research. She is writing a memoir about her experience with lupus.
This story appears in the Winter 2012 issue of The Well Magazine. Click on the cover to read the magazine