Sjogren's World is a great resource.
Yesterday, I received this question from a reader:
I thought I read in one of your blogs that you were interested in what your readers, "have" do you want to know, really?Well, sure I do, for a variety of reasons.
Mostly my intent isn't a morbid interest in finding out what readers "have"; but instead offering sjoggies an empathetic ear to express themselves in terms of their symptoms and react to the difficulties of this disease. Because in all honesty, there aren't a lot of places to do that; at your your mother-in-law's dinner table, for example. Or over a stack of papers at your workplace. Or sitting in Starbucks sipping a skinny peppermint mocha with your friends.
It's important for anyone with a chronic illness to understand what is happening to their body, but above and beyond the information found in Anatomy and Physiology 101, it's also important to understand how others are coping with all the changes that accompany their disease. The need to connect with others is especially important for those of us who deal with a disease that is frequently unknown or misunderstood even by health professionals. When one sjoggie comments that she "crashed", or that he is in a "flare", we know what that means.
When another person with Sjogren's syndrome tells me, "I know how you feel!" it's especially meaningful. Because that person does know how I feel and that is a valuable and rare thing.
When I was first diagnosed, I was certain that since I -- a health professional -- had never heard of Sjogren's syndrome, that nobody else had either. I felt isolated and scared and overwhelmed. It was such a relief to find other sjoggies and compare notes, receive great information, and enjoy tremendous support from those people that could authentically do so.
So, yes. I want to hear from you. Please comment whenever you can to contribute to the discussions that are initiated here or at any other sites where sjoggies gather. Check my sidebar for links to other sjoggie blogs, forums, organizations, and to my email.
So. What DO you have? I really want to know.