In which I observe World Lupus Day

 (Adapted from an essay I wrote 13 March 2021.)

I don’t often write about my health here, mainly because I’m afraid of being too maudlin, but since today is World Lupus Awareness Day, I thought I’d give it a shot.

Just (or at least mostly)the facts, ma’am…

Lupus is an autoimmune disease, and it’s an “invisible illness”, which means that people with lupus typically don’t look sick. 

I was sixteen when I was diagnosed with systemic lupus erythematosus (SLE). 

I don’t remember a lot of the details. What I do remember is being too ill to do a lot of the stuff a 16-year-old girl wants to do.  I remember taking high doses of prednisone, my face swelling up like a chipmunk, and gaining a lot of weight. 

I’d started taking piano lessons when I was eight.  Ten tears later, the joints in my hands were red and swollen, and it was painful for me to play.

Over the following years, the lupus also affected my kidneys, my lungs, my neurological system, and my circulatory system. 

My only attempt at having a child ended when, at 29 weeks, my daughter Holly was stillborn.

I developed high blood pressure and elevated cholesterol levels, though my physicians couldn’t be certain if they resulted from the lupus or the prednisone I’d been taking for so many years.

At the age of 31, I was walking to work when I felt a twinge in my chest.  “All I need now is bronchitis,” I remember thinking.  Throughout the day the pain came and went, until finally a co-worker persuaded my to call my doctor, who urged me to come to the ER as soon as possible.  It turned out I was having a mild heart attack. 

It was eventually determined that I had four blocked arteries, and bypass surgery was recommended.  Due to my other health problems, I was kept under observation while the tests and prep were done, a very long three weeks. 

The surgery was the impetus I needed to make a change in my life.  The following September I returned to school to get a graduate degree in librarianship.  

Jobs in my field were scarce in the mid-1990s, and my search for a professional position led me to northern Saskatchewan.  Dissatisfaction with small town life took me to Boston.  A vacation in Los Angeles lured me to Southern California, where I met the love of my life.

I haven’t had a flare for several years now, though I still have to be very careful not to get too stressed or tired.  I’m still on multiple medications, but (thankfully) managed to kick the prednisone habit a few years ago. 

I was told a few years ago that two of the bypasses are now blocked. 

I had an ischemic heart attack two years ago, and retired a few months later.

There are still days when it’s really hard to get out of bed in the morning because I’m so fatigued, or because my joints hurt so badly.

I feel very fortunate that my husband, family, and friends are so understanding.

Please feel free to post questions and comments below. I promise I'll respond.