I am Patricia Dees and I am a Lupus Warrior. I have been battling lupus since 2008. It started with symptoms that are common for people with lupus—swollen joints, severe headaches, rashes on my face and body, relentless fatigue and kidney problems. The doctors and I chalked it up to the stress of being a newly single mom of four children, working two jobs and trying to make ends meet. Several months later I suffered a massive seizure and ended up in the emergency room where I was finally diagnosed with lupus.
Since being diagnosed, life has been a rollercoaster. Some days are harder than others. Some days I can’t even get out of bed in the morning because the pain and fatigue are so overwhelming. Other days I feel better and am able to get up and get moving. That is one of the hardest aspects of living with lupus, it is difficult to manage and so unpredictable that it makes it difficult to lead a normal life.
I didn’t talk much about my disease at first because many people have never heard of lupus and don’t understand how serious it is. After many years of fighting lupus alone, I was introduced to the Lupus Foundation of America, Heartland Chapter and met many others who are also battling lupus. Through participation in their lupus support group and education conferences, I have learned how to better cope with lupus and how to manage the symptoms. I wanted to get more involved and help others who are also living with lupus so I became a volunteer, ambassador, advocate and a fundraiser for their annual Walk to End Lupus Now.
The chapter really came to my aid when I needed them the most. As a single mother on disability, I feel the daily strain of having to choose between medications, household and personal needs, and other necessities, especially since my 15-year-old daughter was also recently diagnosed with lupus. When the chapter staff heard I was struggling, they stepped in through the organization’s Patient Assistance Fund and helped me with a utility bill payment which prevented the utility from shutting off service. It helped to lift a huge burden from my shoulders so I could focus on getting healthy and travel to watch my oldest daughter graduate from college.
As I begin my reflections, I can’t help but become overwhelmed with gratitude for the people who give generously to the Heartland Chapter so they can assist me in my battle against this mysterious disease.