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A Bad Day in the Life of Lupus

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I have Lupus, and have had it for sixteen years. It’s been under control, mainly because of high doses of Prednisone, but my rheumatologist feels (as I do) that I’ve been on steroids long enough-too long. It’s caused osteoporosis, tooth loss, massive weight gain, and a host of other side effects, including fulminate pneumonia, for which I was intubated and on a respirator for six days.


But today is the first time in a long time I’ve felt the full brunt of the disease. Actually, it started yesterday when I had an asthma attack and realized that the back of my lung fields hurt. It always signals a lupus flare. And then my temperature went up and the achiness of my joints and other flu-like symptoms crept up, until I was in bed, under three blankets, shivering because I was so cold. My inhalers took care of the wheezing in my lungs, but I was short of breath for many hours afterwards.


Welcome to the world of Lupus. One day, you feel okay. You do your normal activities and go about your business and then WHAM! you’re in bed and can barely make it to the bathroom. I am blessed with a husband who, after twelve and a half years of marriage, is used to my flares. My son, who is eleven, helps me whenever he can. He checks on me constantly, probably because when he was nine, he found me unresponsive in bed one morning, leading to an eight day coma, when my kidneys failed and my lungs failed and I was deathly ill. I came out of that by God’s grace. But I know it’s on my child’s mind and will be forever. I wish I could erase it from his memory.


Lupus affects 1.5 million Americans each year, 95 percent of whom are women in their child-bearing years. I was diagnosed at thirty-four. My lupus was mild when I was diagnosed, but after having my son, it reared it’s ugly head and by 1999, I was no longer able to work as an R.N. I went on Social Security Disability in 2002. We were living in south Florida then, and we thought that moving back to New Jersey would help. But the winter we’ve had ravaged my joints, causing such terrible leg pain that I was living on Vicodin. I go to a warm-water pool three times a week for PT for my fibromyalgia, another illness that often occurs with Lupus. I went twice this week, and was supposed to go today, but I can barely get out of bed, so there’s no way I could make it to the gym.


My bedroom has become my jail cell. I have iced tea, water and coffee brought to me by my husband and son. My husband has taken over the daily chores, despite working two night-shift jobs to pay the bills. Right now, we’re waiting for our insurance cards from my husband’s new job, so I can get lab work done to see where my lupus status is. I also need a V/Q scan, which shows if one has clots in the lungs, which may be a reason for my chronic shortness of breath. I need that scan because if I have a clot, it can travel to my heart or brain and kill me instantly. I have too much to accomplish before I die at fifty.


I am going back to school on-line at Grand Canyon University. I was looking at on-line schools and found that Grand Canyon was the only one that offered English Literature as a B.A. online. And then I saw they had a B.A. in Christian studies and it peaked my interest. I am a Christian, who has accepted the Lord as my savior, and I’ve always wanted to learn more about Christianity. I sat in bed one night, trying to figure out how to use the seventeen years of nursing experience I had in a new way. God’s voice spoke to me and said to be a hospice or hospital chaplain. It was a bolt out of the blue! It was perfect! I worked for ten years as a trauma/flight RN and comforted families dealing with sudden deaths; and then, after being diagnosed with Lupus and not being able to fly any longer, I worked on an oncology unit, where I comforted patients and their families through the death process.


So, I’m going to start school in April, God willing. I am praying this flare ends soon. I have things to do, including going to our new church for the first time on Sunday, and getting a new puppy next Saturday. Life goes on, whether you are sick or not. And I need to get on with life, because I’m not ready for the alternative yet.

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