The first World Sjogren’s Day was July 23, 2010, one day after I had my first (and only) daughter. Which, my doctor says, was the likely trigger for me developing primary Sjogren’s Syndrome myself (the causes of autoimmune disease are largely unknown but like lupus, it’s thought to be triggered by hormones, and is most often diagnosed in women of childbearing age). Sjogren’s is often co-current with other autoimmune diseases, including lupus.
Sjogren’s (show-grins) attacks healthy cells and causes dry eyes and dry mouth. But whoa Nelly, it’s so much more: never-ending fatigue, chronic pain, extreme sensitivity to stress (+ or -). Best of all, it makes me feel hungover to varying degrees most days, sans the good time the night before.
It’s a life sentence. It’s partially managed by medications but most of my good days are due to major lifestyle changes. And it’s not all bad: I’m learning how to live a balanced life. I’m learning how to say no. I’m learning that beyond my daughter, family, and close friends, I don’t need much. I’m honing in on what adds joy to my life, and discovering all the things within me that block that joy. I’ve stopped being in a rush, stopped being busy just because being busy is what we do. I’ve found work I love that helps support my family without running my health into the ground.
But it’s hard. If you’re still reading, know that you likely accomplish more before 11 am than I will all day. So yes–feel good about that! Good health is a beautiful thing. I miss my old Energizer Bunny self–she did All The Things (and had oh-so-much fun!). New me still has big dreams. And hates how long these take to accomplish.
Everyday with Sjogren’s is different, and despite my best efforts, unpredictable. I’m lucky to have the love and support of so many. And I’m so lucky to have been forced to slow down, as I’m not exactly sure I’d have enjoyed being a mom nearly as much had my body not forced me to stop and smell the roses, so to speak.
My story isn’t unique. The truth is that we all have a disease that’s impacted our lives or the lives of those we love. I ask you to take another 5 minutes of your life and watch this video that demonstrates the importance of funding basic science. It starts with this question: It’s 1960, and you have $10 to donate: where’s your $ best spent? You might be surprised.
If you’re still with me, thx for letting me vent AND get on my soapbox.