• It’s Lupus Awareness Month… I just call It May

    May is Lupus Awareness Month. I got the message in my email this morning, but the message was not louder than the joint pain I already had.

    My awareness of Lupus began a few years ago when I was first diagnosed. I believe I went undiagnosed for probably 10 years. I was just sick a lot. I had this rash on my face and body that wouldn’t go away. I felt exhausted, had joint pain, kidney pain, and seemed to get worse in sunlight. It seemed like a weird ghost of an illness that would shape shift into different things. Lupus is definitely a shape-shifter of an illness, but it can be managed.

    This morning, May 1 , I woke with my feet swollen — and I had not danced on any tables or run any marathons the night before. I just had garden variety joint inflammation. My wrists, fingers and elbows were puffy with inflammation too, and I hadn’t played a tennis match, guitar, or even a thumb war. It is safe to say I am pretty aware of the weird, floating inflammation of Lupus. What I didn’t know was that it could attack the throat.

    I had this pervasive cough; it wouldn’t go away. I was afraid to see the Rheumatologist, but I eventually went. He happens to be an arthritis, connective tissue disorder specialist, and an allergist. He measured my breathing with a spirometry test, which tests how much air I can blow out and how much I can suck in. If you know me, I am totally full of hot air, but none of it showed up on the test. He said, “you have the lung capacity of an elderly smoker.”

    He looked at me over the rim of his silver framed glasses and added, “You need more tests.”

    It’s never good when the specialist sends you to another specialist. I cried all the way home. I’m not old. I’m a little soft around the edges, cranky, but I am not ready for the rest home or the big rest home in the sky. I just have Lupus. The next specialist said that I have a larynx problem and it is common with connective tissue disorders like Lupus.

    For me, it isn’t Lupus Awareness Month, it’s Lupus Awareness Lifetime. Sometimes it is silent; sometimes it makes my skin break out in big pink spots; sometimes, my joints swell; sometimes my throat swells or my skin gets tight and sometimes my lungs and kidneys are involved. Sometimes it is hard to talk, sometimes I need help putting on my own clothes. When I can, I party like a rock star, bike, hike Stebbins Cold Canyon, and enjoy whatever I can do. Other times, the wolf sneaks up and gives me a painful Lupus nip.

    Lupus means wolf and she’s a biter.

    Many people in my town have Lupus or know someone with Lupus. For Lupus Awareness month, I’d like to invite people to write in what lupus looks like to them. Also, please check out The Lupus Foundation of America. It has a lot of information on the disease. Please visit their website to find out more. Wear a purple wristband and show your support, pledge support, join the walk for Lupus, or send an e-card to 10 people on May 10 to support awareness.



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