April is Sjogren's (SHOW-grins) Syndrome Awareness Month. Sjogren’s is an autoimmune disease that attacks the moisture glands in your body. It is systemic, and I know quite a bit about it because I have it. It is not something I post about very often; I don’t want people to think I am a disease. Nor do I want others to worry about me or think I cannot do my job because of it.
You may have heard of Venus Williams, Shannon Boxx, and Carrie Ann Inaba; they all have Sjogren’s and live with it every day of their lives, just like I do. There are adjustments that they each made in order to live a great life, just like I have had to do. My body rejects and attacks my moisture glands; I take medication, some supplements, and drink a whole lot of water!! I carry a water bottle with me where ever I go. I do not produce tears very much, so I wear some special glasses to help me with the dry eye. I need them especially when I am outside, close to a fan, or near air currents. I use a lot of oils and lotions on my skin because it is dry. I have changed my diet, make sure I wear sunscreen, keep eye drops on hand, and get the rest I need. I have never canceled a gig because of Sjogren’s; I have, however, left the dishes in my sink in favor of a nap.
On average, it takes 6-8 years to get diagnosed when you have this disease. In my own experience, I had to keep going to doctors and telling them that something was wrong. I repeated the story until I finally found one physician that would listen to me. Having Sjogren’s has taught me to make myself a priority, to persevere, and be my own best advocate. It has also shown me that if you need tools to help you, you need to make those tools beautiful so that you will want to use them. I have some amazing water bottles, great glasses, and lovely hats!! I work very hard to manage this disease, just as many others manage their own health situations like RA, diabetes, or food allergies. I have also discovered that my attitude affects my management of this disorder.
Sjogren’s is part of my life story. I know you have had your own challenges, too, and those challenges are part of your story. You may even be in the middle of knowing something is wrong — don’t ignore that. I believe we actually know ourselves well and that feeling of pain or discomfort is a call to action. Believe in yourself enough to keep pushing until you get the help you need.
We all have to live with something; let us focus on the LIVE part.