I was diagnosed about 34 years ago. At that time I was 29 years old, married, and had an eight month old daughter. After many months of suffering I was told that I had Systemic Lupus Erythematous. I was handed a yellow tri-fold pamphlet and sent home.There wasn't a lot of information and very little hope. Most of the information listed signs and symptoms and told me that I would be dead in five to ten years. Even in my attempts to discuss it with others the response was often the same. "I knew someone with lupus, they died. This was not what I wanted to hear.
The first ten or so years was rough. So I really don't remember a lot of details about my thirties. I was glad to live to see my daughter enter school and grow, but I was usually hospitalized two to three times per year. With so much sickness, I decided to make some memories. I bought a timeshare and we began to travel. By that time I was divorced and I didn't want my daughter's only memories of me to be constantly sick and in and out of the hospital. By the time I was forty, things had settled down. I had learned to listen to my body and knew how to shut down with medication and rest, rather than fight through and end up in the hospital.
Through the years, the lupus has constantly been there. There have been good days and bad days. On some really bad days it felt like I had woke up with the body of a 90 year old woman. I used to joke that because i had the 90 year old's body, somewhere in the world a 90 year old woman woke up with my body and was having a heck of a good time! I know that was corny, but it kept me going as i chuckled through the pain.
I'm one of the lucky ones. I am blessed that I have not become incapacitated by lupus and at this time the lupus is quiet. I remember at my worse, I bemoaned "why me"? My best friend, Pat, gave me the answer. She told me, "You have it so you can tell someone else that you made it through."
So now I am telling all of you. With God's grace I have made it through. I have studied and learned as much as possible about lupus and about my body and how it works. I have made it this far by faith. And if you have lupus, you can make it too. Keep in touch with your medical team. Learn about your signs, symptoms, and triggers. Build a support system. When the lupus was at its worse I found it easier to have several people, each with a single task. One would babysit, another clean, another take me to the doctor, and another would pick up my meds and grocery shop. But above all keep positive and don't lose your faith. Surround yourself with people who love and care about you. Some negative people had to be removed from my life and even today, I avoid stress and drama. It just isn't worth it. I still have good days and bad days. But I treasure each and every day.
This is my lupus story. I hope it helps you to understand just a little bit more about lupus. Now, go tell your story.