BY KENDRA GAEDE

The funny thing is that this all began because my immune system was trying to protect me. It just got a little confused as to who was the enemy and started attacking me instead.   At 31, I considered myself fairly healthy. One day I felt an odd twinge in a thumb joint. My hands seemed weaker. I had also begun having unexplainable fatigue and circulation problems. I tried to continue on with life as usual, but it didn’t seem to be working.

Then I could no longer open jars or bottles like before. The joints of my hands swelled so much that my wedding ring didn’t fit. I had to quit playing slo-pitch softball because I couldn’t throw anymore and was unable to run properly. What used to be an easy walk around the block became a painful endeavour that left me demoralized and exhausted.

The parade of doctors and specialists never seemed to end. On the whole, they told me the same thing—we don’t know what’s wrong with you.

Meanwhile, over the months I could feel my body deteriorating slowly and I didn’t know why. Like many lupus patients prior to diagnosis, I thought I must be going crazy.

I was finally diagnosed in a rheumatologist’s office in September of 2006. It was both the best and worst day of my life. While it was a huge relief to know what was wrong, I was yet to understand the ramifications of the diagnosis. I walked to my car, called my mother and cried for 20 minutes straight releasing my grief, anger and sorrow.

Learning to live with the realities of lupus has been difficult for me. I am in the prime of my life, and I have been handed a disease that saps my energy, takes away my mobility and generally frustrates the hell out of me. I am not alone. Approximately 50,000 Canadians live with lupus.

Lupus is chronic autoimmune disease in which the immune system attacks the body’s own healthy cells causing tissue damage, organ failure and sometimes death.

My lupus attacks my joints and interconnective tissues, causing arthritis inflammation and pain, particularly in my hands. Among numerous other symptoms, I also like many patients prior to diagnosis, I thought I must be going crazy.

I also have Raynaud’s phenomenon, a circulation problem that becomes extremely difficult to manage during Winnipeg’s cold winters.

Lupus tends to affect women more than men. These women are often in their child-bearing years, like me. And until my lupus is under control, which doesn’t seem to be on the horizon anytime soon, getting pregnant is not an option.

With treatment, lupus is manageable. I take a myriad of drugs every day to help manage my lupus. They are not a cure, but the drugs make my life more normal and I try to continue to enjoy the things I used to. I have had to modify my expectations a lot.

Lupus Canada and the Lupus Society of Manitoba have been great resources for my husband and I, as we continue along the path of my treatment. Through the Lupus Society of Manitoba I have made friends with others who have learned to manage their lupus and still enjoy rich and productive lives.

Many patients undergo cycles in which the disease becomes quiet after it is brought under control. I hope that I will reach a stage where my lupus symptoms level off, and possibly go into remission, but this is not a given.

Better methods of diagnosis, treatment and follow-up have improved the life expectancy of lupus patients. Most of us can expect to live to an average age. I hope for better than that.

I strongly encourage you to walk in the Walk a Block for Lupus event or support a walker and help raise funds for advocacy, education, public awareness, support and research for this serious, under-recognized disease.

For more information, please contact: Lupus Society of Manitoba Inc. 105- 386 Broadway, Winnipeg MB R3C 3R6

Phone: 204-942-6825 Fax: 204-942-4894 or contact us by email here