Hello Creston! I’m totally loving this weather. Aren’t you?
May is Lupus Awareness Month. Lupus is an extremely personal issue for me because my family has been touched by this disease.
Lupus is an auto-immune disease that causes the body’s defense mechanisms to go into overdrive and attack healthy body tissues. The most noticeable symptom of lupus is a butterfly shaped rash across the nose and cheeks, but people with the disease will also experience extreme fatigue, high fevers, headaches, sensitivity to light and hair loss.
There are several types of lupus and they each have somewhat different effects on the body.
My father was diagnosed with systemic lupus erythematosus when I was in grade school. I can’t remember exactly what happened. All I know is that I was told he was terribly sick and would never get better.
He had doctors in Billings, Montana, and Salt Lake City, Utah, monitoring his health and every year he had to go to one place or the other. For a lot of years, the disease was in remission and he was, for all intents and purposes, healthy.
During the time that Dad was in remission, I sort of forgot he was sick. It was always in the back of my head, but since him being sick was a normal part of our lives, all the little indicators of his illness were ... well, normal.
I asked my sister what she remembered about Dad and lupus during our childhood, and she said all she remembers is how worried our grandmother was that we would get it because it’s genetic.
“Whenever we were running around getting sweaty and red-faced she would get concerned and tell us we needed to stop running and calm down,” she said. “I went to see Grandma once [as an adult], and I had just exercised and my face was red, and she was very concerned. I told her it was no big deal and that I was just exercising, and she said, ‘You shouldn’t do that.’ I probably said ‘What, Grandma? Exercise? It’s good for me.’ But she was dead serious that I shouldn’t do it. It makes me wonder if our whole lives we weren’t completely dissuaded from exercise or exertion because they had these concerns. I wonder how many times they were looking at us and wondering if one of us was going to get it next.”
She added that whenever we had labor to do, such as haying or chopping wood, the entire family insisted that dad take lots of breaks and never exert himself, and since she never knew he was sick, she simply thought that over exerting yourself was a bad thing.
Looking back, she’s right, we were always discouraged from being active. It’s little wonder we had weight problems growing up.
Dad died in 1997 as a result of injuries sustained in a motorcycle accident. He had just bought a new Harley and was making a trip to Sturgis for the town’s annual bike rally.
We didn’t know it was going to be his last trip.
We also didn’t know that he had come out of remission and that he somehow knew this was his last chance to go. I think he didn’t want us to know because we would have stopped him from going and he didn’t want us to worry.
After he died, I remember finding a journal he had been writing, and in that journal he chronicled the last months of his life. In one entry he explained that at his last doctors appointment, he was told he only had full use of one lung and part of the other and his kidneys and liver were failing.
There was also a horoscope he had clipped from the paper and the ad for the motorcycle he bought and somehow everything fit together to paint a picture of my dad’s plan to make one last trip to the bike rally.
Apparently, when he came out of remission this last time, his doctors were trying a new treatment on him because I found chemotherapy drugs in his refrigerator.
Lupus affects more than 5 million people and 90 percent of those affected are women, which makes my dad’s case somewhat unique. It’s also genetic, which means that even though my sister and I don’t have the disease, we are carriers of the gene that causes it.
It can be hard to diagnose lupus because its symptoms mimic those of many other diseases and illnesses and it can be several years before a definitive diagnosis is made.
There is no cure for the disease, and any treatment simply slows its progression.
Purple is the color of lupus awareness. To honor those with lupus and to raise awareness for the disease, turn your Facebook, Instagram or Twitter profile purple, or set up a donation event to raise money for research to find a cure. Dates and events suggested on http://www.lupusawarenessmonth.org are;
PJ Day - May 2
International Lupus Awareness Day - May 10
Purple Day - May 18
For more information on the disease, visit http://www.lupus.org.