Tuesday, May 10, 2016

World Lupus Day 2016

Today is World Lupus Day-- a day intended to raise awareness about this complicated and difficult disease.

I have had lupus for 12 years and have written about it quite often on this blog here, here, here, and here. I probably sound like a broken record to many people, but this is my reality.

Lupus affects many different aspects of my life. I share my story and life to help people understand what it means to live with a chronic illness. Lupus Research is finally on the rise after years of being ignored by scientists to study more popular or pressing diseases. Only recently, after a 50 year hiatus, have new drugs been developed to treat lupus. I take an anti-malarial medication which moderates my immune system.

Here are a few facts about lupus:

  • Lupus is an auto-immune disease where the immune system attacks healthy tissue in the body. 
  • At least 1.5 million Americans have lupus.
  • Women of color are two to three times more likely to develop lupus than Caucasian women. 
  • There is no one diagnostic test for lupus. Doctor diagnose lupus based on eleven criteria. Four of the diagnostic criteria must be met to diagnose a person with lupus. 
  • Lupus often mimics or imitates other diseases so it is very hard to diagnose. 
But what does this mean for a normal woman, trying to live an ordinary life? Here are a few ways that lupus affects my daily life.

  • Lupus causes me to constantly readjust and adapt my life and schedule. Lack of sleep is a big trigger, so if don't get a good night's rest, I have to take a nap or sleep in to remain healthy.
  • I must constantly assess my health and adapt to what is needed.
  • Stress can trigger flares, so I must be careful to manage and cope with stress.
  • I see a specialist every three months (or more often if I am really sick) and get several vials of blood drawn every three months.
  • I take medication every single day and will for the rest of my day.
  • Pregnancy when you have lupus becomes really complicated. I had relatively easy pregnancies, but I had to see an OB/GYN and a perinatologist. I had to have ultrasounds on a monthly basis. 
  • I worry about insurance issues. I have to have good insurance because my costs would go through the roof. 
  • I work really, really hard to be healthy. I think about it a lot. The reason I am so healthy is due to good medical care and extreme vigilance about my health. I'm also extremely lucky that my lupus is rather mild. 
  • There have been times when I have had to seriously curtail my kids' activities because I didn't have the energy or strength to deal with their complicated schedules. 
  • I have to be very careful about the sun. I wear sunscreen all the time. If I go outside to garden, I completely cover.
  • I have to adapt tools I use in the kitchen. I rarely make homemade mashed potatoes anymore because peeling potatoes is too painful. I use an electric can opener because it hurts my wrist to use a manual can opener. 
I don't share this post to beg for sympathy. I have a wonderful life with many opportunities and blessings.  I just want people to be aware of this disease. 

1 comment:

Handsfullmom said...

Living with my thyroid disease means a lot of this is familiar to me. In my case, my sleep is just not the quality that I need, even when I am not waking up with a baby, so I really have to protect that daily nap time. Sometimes I start to covet all the things I might have time for if I didn't need that nap, but then I remind myself how much I am blessed to be able to do. You certainly never take good health for granted when you have had poor health for long periods of time.