Saturday, June 30, 2012

Cheering for Venus

Tennis star Venus Williams has won Wimbledon five times, yet when the 2012 tournament started last week she was bounced 6-1, 6-3 in the first round. Just like that -- she was done. I've always liked watching Venus play, but I really started cheering for her when I learned that she has an autoimmune disorder called Sjogren's Syndrome. Diane Pucin of the L.A. Times wrote that the disease "can leave her [Williams] feeling lethargic even when she has rested and eaten well and treated her body as if it is a precious heirloom. But the thing about precious heirlooms is that they can't just be taken off the shelf, dusted off and made new again."

I had never heard of Sjogren's (SHOW-grins) until my rheumatologist had me tested for the disease last year. I didn't want to do the test -- I was sick of tests and the accompanying poking and prodding -- but I think my rheumatologist is brilliant, so I agreed. She ordered a lip biopsy, and it was about as fun as it sounds. A doctor numbed my lip, made an incision inside my mouth, and then used tweezers to pull out about 5-7 tissue samples from my salivary glands. I cried -- not because it hurt, but because I was scared. All of the testing takes it toll emotionally.

I've lost track of how many diseases I've been tested for over the past five years. And most of the tests aren't  "one and done" -- I repeat them every six months, or every year, or whenever something else weird happens with my body. My case is challenging because I tend to show (and test positive for) different things, yet I don't always fall neatly into a diagnostic category. That's the case with Sjogren's. My test result was, in fact, positive. But, since I was on the "low end" of the testing scale, I didn't receive an official diagnosis from UM. I tested positive, but all that the doctors are willing to say is that I have Sjogren's-like symptoms. I take 400 mg of Plaquenil a day as a result.

My kidney disease, IgA Nephropathy, is also an autoimmune disorder, and the UM doctors aren't sure how the IgA and the Sjogren's fit together -- if they do at all. But I'm glad I'm in a healthcare system where the doctors collaborate on my care, and I'm sure they'll figure it out in due time. And I'm so focused on my kidneys that I never even think about the Sjogren's -- that is, until there's a major tennis tournament. Then I remember, and I watch Venus, and I hope that she wins!     

1 comment:

  1. Beautifully written, as usual! I cheer for Venus also, and anyone who is facing a disease of this sort since it is so difficult to understand.

    Your willingness to share your medical journey is educational and inspiring to me. I am proud of you baby daughter!!