My Lupus Journey: A Story of Resilience, Voice, and Survival

It's an honor to share my Lupus story with the Lupus Lives Foundation.

I am Paula Garrett, a Lupus Warrior. I am a mother, a daughter, a sister, Tee Tee, Teetaboo, Nonni, and a friend. My story begins in Lansing, Michigan, where I was born and raised. I was officially diagnosed with Lupus on February 2, 2000. Unofficially, my doctors believe I have had lupus since I was about 12 or 13 years old. This explained so much growing up.

My name is Karey Gelrud. I was diagnosed with lupus, 29 days before my 21st birthday, back in 2009. I started with severe joint pain, which spread to my joints, and it worsened to the point where I couldn’t walk, and I was extremely weak. My mom called her friend, a Nurse Practitioner, who ran a multitude of tests.

My journey with lupus began 31 years ago at just 17 years old, right before the start of my senior year of high school. What should have been one of the most exciting times of my life quickly became the fight of my life. At the time, I had no idea what lupus was or how deeply it would impact my future. I was diagnosed with SLE lupus nephritis and immediately lost about 25% of my kidney function. Over the years, lupus has attacked my body in ways I could have never imagined. It has affected my skin, causing painful wounds that sometimes required wound vacs and skin grafts to heal. I have spent months at a time under the care of home health nurses, managing treatments that exhausted my long-term disability and FMLA benefits. Lupus has also impacted my vision, forcing me to adjust how I see and navigate the world, including sensitivity to light and difficulty reading small print. There was a time when I could not walk due to the toll of the medications and the disease. After spending a month in the ICU, I developed severe muscle atrophy and had to relearn how to walk. Of all the things lupus has taken, one of the hardest losses has been my ability to have children.

One day in the emergency room completely changed my life. I was just 14 years old when I began feeling overwhelmingly sick—something I couldn’t explain and no one fully understood at the time. What started as a concern quickly turned into something much more serious. I was admitted to the hospital, and after routine lab work, doctors discovered that my kidneys had failed. Within weeks, after being referred to specialists, I was diagnosed with lupus.