In Your Own Words: Sharing Your Lupus Journey

"I've been diagnosed with SLE for 30 years. It has been challenging to learn how to adapt my lifestyle so that Lupus doesn't define or dictate how I spend my time. I was able to work 12 hour shifts until 2011 after being diagnosed with AVN, Kienboch's Disease, that affected my dominant hand. I had surgical removal of my lunate bone to relieve the pain but sadly it caused a lot of problems, loss of motion, decreased strength and pain.

The hardest part of Lupus has been living with the pain and fatigue. I try to keep my daily routine the same so that I can stay active. I miss my "before life" where very little thought was put into my plans or physical activities. Now I understand that at times I won't be able to do certain activities, not knowing how you'll be feeling makes planning difficult.

Sometimes I know my family and friends think I'm making excuses even though they have watched my progression...it's ok because deep down I know they miss the old me. Sharing stories and experiences really helps me to cope. This is my life and Lupus is a part of me, it will not rule me!"