Wednesday, April 4, 2012

This is Why

Today's WEGO writing prompt:
I write about my health because......

When I was first diagnosed with Sjogren's syndrome, my fingers couldn't fly quickly enough over my computer keyboard to type "Sjogren's syndrome" into that Google search bar.

Not a lot of information came up. Granted, that was eight years ago. But even so, at the time, the estimated number of people who had Sjogren's was FOUR MILLION.

That's a lot of people wanting to know more about their disease -- and a lot of people who weren't getting useful information.

So I began to write Reasonably Well as much for me as for anyone else. It was a place to store information, to journal my experiences, and to vent. Four years later, I'm still writing for many of the same reasons, but there's more....

I'm writing because I receive letters almost every day in which people with Sjogren's syndrome share their experiences with this disease. They ask questions -- some I can answer, some I can't. They share their grief, their pain, their symptoms, and their frustrations. But they also share successes and humor.

Those letters are what keep me from becoming totally self-absorbed in my disease, because they bring with them the awareness that there's millions of other people out there struggling with the same things that I am. They also bring expressions of gratitude and encouragement that keep me motivated to keep those daily posts flowing. Those letters connect me to the autoimmune community in ways that I couldn't imagine when I wrote my first post.

I am gratified that people that I don't know well can find something of value in Reasonably Well, but I'm also thankful that many of my friends and family members have also gained a new understanding about autoimmune disease and more about my specific experience with AI.

It's so hard to answer those questions that are asked in social situations, "So. How are you?" because the expected answer is always, "Fine. And you?" When I answer any differently, inevitably the conversation becomes awkward. There's those special people and times when the automatic response isn't the one that they expect or want, and for those people it's easy to go into detail. But for those who don't know how to ask, or are uncomfortable with a personal conversation, then they can find answers in my writing.

Sometimes, they find more information and answers than they bargained for. Hehe.

What? You don't want to read all about my Sjogren's related erm.....intestinal motility issues and other disgusting symptoms? Too bad. It's all in there.


annie said...

Thanks for all you do, the information you share, and the great sense of humor that lets me get through my day.

When I was first diagnosed, three years ago,yours was one of the first places I looked up for information. I still enjoy coming to your blog to read not only about sjogren's, but about your family (including Maggie and Lulu), your friends (hi Terese and Greg), and of course Pinky! Also, thank you for introducing other wonderful people who blog about our're all so resourceful and nice. Too bad we'll never meet in person, but we meet in cyberspace.erivage

kd said...

I love it! And am right there with you in regards to the intestinal loveliness. Thank you for writing! My new motto ...sjogren's smogrens. It's not getting the best of me!!!

Amy Junod said...

My local Sjogren's Syndrome Foundation Support Group recently started a Facebook page. Someone posted about a great website we all just HAD to go to. It was yours. :-)
Toyed with the idea of being a name mentioning Pinky and I are buds. (tee hee)
Seriously though you were God sent years ago and am a loyal BICJ fan.

Omgrrrl said...

Keep Writing the Good Write.
Keep Fighting the Good Fight.

Julia Oleinik said...

Thanks, everyone! And Amy -- name drop away. Pinky drops YOURS all the time..

ShEiLa said...

I just had a colonoscopy this morning... all is well. But I must admit when it came to the pain scale... I had to just focus on the abdominal pain... if I even talked about my normal every day pain... especially without my meds... I still may be there.

I am very thankful for your blog.