About Lupus Thrivers


Through this work, I meet fellow lupies and our allies, all pilgrims on the same perilous path, activists and advocates, all doing their best to raise awareness of this harsh taskmaster known as lupus.

We may have lupus, whether SLE, Discoid or DIL. We're as likely to have Fibromyalgia, Hughes (or Antiphospholipid Antibody Syndrome), Raynaud's Syndrome, Crohn's, Celiac, Graves' Disease, Sjogren's, Multiple Sclerosis, a type of diabetes or cancer or any other related disease. We might even have a few, rubbing up against each other and rubbing us the wrong way. They're all kissin' cousins in the same ferocious family. We stand together against them, one and all.

It is an honor to share my work, my hope and my resolve with others of equal commitment. It encourages us all to realize that in our efforts, we are not alone. We are compatriots and co-workers at distant desks, linked together by not only our disease but our determination to serve this great purpose.

My aunt, Jeanne Gessner, has raised a big family, hiked peaks and canyons around the world. She and my Uncle Jim rode off on his motorcycle 60 years ago and they're still riding, still flying high, wide and handsome, at 80 years old. After decades of dueling with Celiac Disease, she says, "For some of us, life is a crucible and we are like fine china; we just get harder."

Courage, as our friend Sharon Sanders so rightly says, is not just for those we usually call heroes. In real daily life, it is facing adversity without surrender and helping others do the same. In our lupus community, we are surrounded by heroes. Whatever their own struggles, they all synthesize their pain into the passion of helping others.

Not all of those who labor on our behalf have lupus - many simply have compassion and a strong sense of responsibility. Some of us wend our way through the web, searching for research, resources and real world tips that will help you tie down your wolf. Others sit in forums, offering compassionate support. Many of us do both. Through this weblog, we meet several of our lupie defenders and learn what keeps them fighting for us all.

We may work in close companionship with others of like mind or we may work alone. Yet, we don't feel alone - we are one with all of you, readers, researchers, writers, publishers and all of us in pain. We will not surrender to this disease, nor go gently into that dark night - we're burning the midnight oil, lighting candles in the darkness, reaching out to our friends, known and unknown.

Sometimes it's hard for us to sleep, thinking of others across the globe, wondering who suffers without understanding and support. Sleep doesn't come easy for any of us, with the wolf as bedmate and pain as our blanket. We try to give you what we all need - the strength to go on, the humor to laugh in the face of fate and the tools it takes to prevail.

That sense of duty is a rerun of Sisyphus and the boulder, a task that will never end. We welcome it as we embrace you, glad to be of service and grateful for your support. Life is hard, and lupus widens the treacherous territory but we can ease the trek along our rocky road. The blessings lie under the boulders and our bruises are our Purple Hearts.

We're all rolling the rock uphill, all being rolled over, all crawling out from under and striving forward again and again. If your family just doesn't get it, we do. If those you love won't wrap their understanding around you, we will. If your medical support is not supportive, we are. Here, on our weblog, we share our stories so you will know you're not alone.

Take Care, Take Heart, Take Courage,

Shar

(Our story links are on your left of this page, second and third from the top.)
- posted by Shar @ 1/20/2007