Before I roll out of bed, I put drops in my eyes. I pinch the bridge of my nose and close my eyes for two minutes as the prescription states. My two minutes go by my way. I count to sixty as fast as I can the first time. The second time I slow down, counting via the Lawrence Welk method—anna one, anna two, anna three… Sometimes I count in Spanish to slow myself down. When I’ve got more important things to do than lie in bed with my eyes closed after I wake up; I count by fives. I’ve been doing this for ten years and most days I have more important things to do.
I repeat this procedure at night and the directions are identical. I'm supposed to keep my eyes closed for two minutes after inserting the drops. I put the second set of drops in before I go to sleep. There’s no need to close my eyes for two minutes when I’m sleeping. Why the drug manufacturer didn’t recommend putting the second set of drops in before going to sleep is one of the millions of mysteries pharmaceutical companies baffle us with each year.
The prescription is Restasis, a liquefied form of cyclosporine. Cyclosporine is an immunosuppressant. It’s one of many immunosuppressant and cytotoxic (chemotherapy) drugs prescribed to me in the last fourteen years during my Julie vs. Julie battle. My white blood cells, which are supposed to fight actual diseases, are overactive, majorly confused, windmill-tilters. They’re producing self-antibodies which can attack any connective tissue in the body, including my tear glands.
My tear ducts are permanently sealed with silicone plugs to help keep moisture in my eyes. This doesn’t affect my ability to cry—I have tears but they’re second-rate. The name of this autoimmune disease that attacks moisture producing glands is Sjogren’s (pronounced Show-grins) syndrome. Venus Williams cited her recent diagnosis with Sjogren’s syndrome as the reason for her withdrawal from the US Open.
There are two types of Sjogrens: primary and secondary. I have secondary, which means I’m blessed with other autoimmune diseases besides Sjogrens. I have Mixed Connective Tissue Disease (MCTD.)
The general reaction to William’s announcement appears to be hey, too bad you had to drop out of the US Open but what about this disease nobody can pronounce? The Chicago Tribune led with “Venus Williams' diagnosis sheds light on Sjogren's syndrome.”
My favorite disrespectful quote from the article is "I am sorry for (Williams) but happy for Sjogren's patients who now have a national spokesman to make people aware of this terrible disease we have," said Audrey Grey-Lowry, of Plainfield, who suffers from Sjogren's.
Articles from the New York Times are titled “Venus William’s Brings Attention to Sjogren’s Syndrome” and “No Easy Answers for Those Who Share William’s Disease.”
Sjogren's syndrome is outta here. I have William’s Disease. It is easier to say.
The assumption that Venus is going to take up the Sjogren’s syndrome cause and become a national spokesperson bothers me. Where is public concern for Venus, the person? She needs time to absorb her diagnosis and find medications that work for her. Where is respect? Because she’s famous she has to take this on? No, she doesn’t. Venus needs time to mourn, to accept she has an incurable, chronic disease she’ll live with the rest of her life—a disease that could end her tennis career.
I’m sorry Venus has to suffer. I don’t care if she’s famous or becomes a spokesperson. I’d rather she has a mild form of the disease and continues to play kick ass tennis. I wish Sjogren’s syndrome wasn’t the thing we have in common. I’d rather belong to the same book club or share a passion for Siamese cats. I’d prefer we shared the ability to play world class tennis. Unfortunately, I don’t play tennis well enough to play poorly.
Causes Jules Jacob Supports
CASA of Southwest Missouri, Master Gardeners of the Ozarks, University of Missouri Master Gardeners, Missouri Court Appointed Special Advocates Association...