One Patient's Positive Perspectives

Why write about lupus?

What is the motivation to write and blog about lupus?  People struggling with lupus, in their own life or that of a loved one or friend, need to know they are not alone.  Writing about my own experiences comes from my yearning to help others get through their health struggles victoriously.  My hope is that I will urge them to find healthy perspectives, and perhaps help guide them away from self-defeating and self-destructive behaviors.  At times my goal is even to urge and cajole other to strive for finding their greatest quality of life, and to help them discover the power of thankfulness.  It is a sad thing when we see ourselves as victims.  We have a choice about how we view the circumstances of life.

Facing an incurable, nagging, uncontrollable and unpredictable auto-immune disease like lupus can be a daunting obstacle to contend with. I am encouraged greatly by precious family and friends who pray for me, help me, encourage me and love me! Everyone should have this blessing of a powerful support network in their lives. Sadly, this is not the case for so many lupus patients.

A need to tell the personal side of lupus

Those who face their disease painfully alone can now reach out for encouragement and perspective through the vast resource of the internet. There are many medical sites dealing with excellent lupus information, and these are important resources for all of us with lupus. However, there is still a great need for telling the personal side of lupus.  I try to tell my lupus story as honestly and accurately as possible, hoping it will help others.

The Lupus Book, by Daniel Wallace, M.D.

When I was first diagnosed with lupus twenty years ago, the Internet we know and use did not exist. (Yes, younger readers may be amazed that there was once a time the Internet did not exist, and average people did not own their own computers.) There was no active chapter of the Lupus Foundation of America in my city or state, so I set out quite alone trying to come to grips with learning about my disease and how to manage it.   My search led me to the County Library, where I spent many hours searching through online medical research services  I purchased Dr. Daniel Wallace’s patient-focused “The Lupus Book” and read it from cover to cover a few times.

I write to offer a shorter path to steer new patients to the information I struggled to find, and to help encourage lupus patients and their families in the challenges and lupus adventures they face.

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Comments on: "Lupus and the motiviation to write about it" (2)

  1. Dear Lupus Adventurer,
    We are so glad you found Dr. Dan Wallace’ Lupus Book helpful in coping with lupus. He is on the Board of Directors of the Lupus Research Institute (LRI) and founded Lupus LA, a member of our Coalition of patient groups. His clinic in Los Angeles is one of the largest centers for lupus care and research in America. You showed so much strength in facing your illness despite the lack of support in your area — no one should have to deal with lupus alone. We hope you and all people with lupus will reach out to us for support — 212-685-4118 and visit our website lupusresearchinstitute.org.

    Best wishes,
    All of us at the LRI

  2. I love reading your blog! I have Lupus, RA and Fibromyalgia and am in pain a good bit of the time. When I feel good, I feel like I have imagined all the pain, when I feel bad-its the pits. I find that reading your blog helps me out and between your blog and my support group I know I’m not alone and its not in my head. Thank you for doing this for the rest of us Lupus suffers!! Hugs, Brenda

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