When you have lupus and must take medication to control it, you need blood work done every month, two months, or three months. I get my blood drawn every other month. My last blood tests showed that my lupus is “less active” than it has ever been before. I should be jumping for joy, but I can’t. I still don’t feel well. Is this as good as it gets?
This reminds me more than ever that lupus has no cure. It also reminds me how little we know about the disease. It takes a battery of tests to be diagnosed with lupus; why only a few blood tests to say it’s “less active”? Do we need more research on what the different levels of lupus do to the body? I need to know where I stand and how to live better, however active my lupus is.
I feel that my physical symptoms aren’t taken into account when my doctor judges my lupus activity and that really frustrates me. I take 26 prescription pills each day and suffer from major fatigue and pain that kick my butt. I want my blood test results to match how I feel.
I need a doctor who sees beyond my lab results and can help me deal with this disease. To do this I’ll need to change rheumatologists. I’ve been with this one for the last four years and she helped me through a terrible flare, but she’s not effective in this “less active” stage of the disease.
I am embarking on different type of battle with lupus but it is still a battle for my life. Is it possible for me to feel as good as my blood work says? I sure hope so because that is my next goal.
Mission Accomplished: Entering the “less active” stage of lupus and having a deeper understanding of my body, symptoms, and blood tests.