Reading about and living with lupus


When first diagnosed with lupus, I started reading about lupus, autoimmune disease, chronic illness, coping skills, alternative healing, research studies … everything about the disease that I could get my hands on. Sixteen years later, I’m still reading. Did all that reading help? Absolutely. I understand how this condition will ebb and flow throughout my lifetime. I understand that people with lupus will experience the presentation of a disease that is unique and unpredictable. When not on steroids, I can be quite pragmatic.

Reading about lupus and living with lupus? Ahhh, now that’s something different altogether.

Hundreds of thousands of people with lupus get up every morning and go to work or school. Most of us have a love/hate relationship with prednisone. Many of us are too sick to work. We volunteer when our health permits. We enrich our lives with friends and family. We spend a lot of time in waiting rooms and hospitals. We spend a ridiculous amount of money on medication and insurance, if we’re lucky. Some of us don’t have insurance and can’t afford the meds we need. We worship and witness our faith…or not. We take ridiculous amounts of toxic funky medications that potentially make us gain weight, lose our hair, damage our liver, or cause cancer. We hope this medication will help us through a lupus flare so we take it anyway. We know absolutely everything about sun protection and learned about it the hard way. On some days, we can’t walk so well. On some days, we are just too tired. When people ask us how we’re doing, most of the time, we say “just great” because it’s easier than the long answer. We have good days. We drive with the top down anyway. We vote. When we’re lucky we relish and appreciate what it feels like to be in a remission. And if we’re lucky we learn to say “no”.

As for me, I am a mother, sister, cousin, colleague and friend. I’m a singing, well-manicured, cradle Catholic, on-line shopping, tv-watching, cat-loving, ocean-seeking, book-reading, guitar-playing, easily amused traveler living in a land-locked midwestern state. Music runs through my head 24/7. I’m learning to paint with acrylics but I’m not very good … yet. I’m Kathy’s best friend and Judy’s younger sister. I’m an alto. I work for a doctor. I have a wicked-funny sense of humor.

I have lupus and I write.


2 responses »

  1. Sue, I think this blog is wonderful and while serving as a catharis for you during the bad times it will also be educational for those of us who love you and want to understand what you live with day in and day out. You go girl!!

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