Sjogren's World Staff
Care
Sjogren's World Administrative Director, Chat Host, Forum Administrator
Hi, I'm Care and I live in Charlotte, NC. My illness hit suddenly right after my 45th birthday. I jokingly commented to my friends that I thought my body was beginning to self-destruct. That wasn't too far from the truth. After visiting 6 doctors in Akron, Ohio and "surviving" two major surgeries, including spinal surgery, I was terrified that no one could help me. I lived with constant neuropathic pain, was having difficulty walking and could no longer drive a car. My primary care doctor referred me to The Cleveland Clinic Foundation's Mellen Center for Multiple Sclerosis. It was there that I found a wonderful neurologist who would help me. With a combination of drugs and determination , I struggled my way back to a "semi-normal" life. I was given the diagnosis of Sjögren's Syndrome with nervous system involvement in 1998.
When Sjögren's affects the nervous system it can "mimic" Multiple Sclerosis. Since my symptoms are primarily those seen with MS, my neurologist suggested I join a Multiple Sclerosis support group. I found the idea of a "online" support group appealing since fatigue and pain kept me home most of the time. The Northeast Ohio Chapter of the National Multiple Sclerosis Society was searching for a volunteer to create an NMSS sponsored online MS Support Group. I volunteered even though I knew next to nothing about computers! Through this online support group I found "Spring" who had symptoms very similar to mine. She had been given a probable MS diagnosis. We became friends and did a fair amount of "symptom" comparing. I told her I thought she might have Sjogren's Syndrome. She did! I finally had found someone like me.
I personally would like to encourage others who do not have a definite diagnosis to come join us. The "road" to diagnosis can be a long and lonely one to travel alone. I have many of the invisible symptoms of Sjögren's Syndrome. The pain, fatigue and cognitive problems associated with Sjögren's are not understood by family and friends - As my primary care doctor commented to me, "Don't expect them to understand, if they can't see it, they won't understand"....And it's true.
I am a graduate of Saint Mary's College, Notre Dame, Indiana. My oldest son, Mark, owns his own Construction Company and built a "dream" home for me in Charlotte, NC. My oldest daughter, Amanda, also lives in Charlotte and is currently in graduate school in Melbourne, Australia. A bonus for me, sunshine and two of my children all in one location! What else could I ask for? Help with my car? Gregg, my youngest son, is a self employed Honda/Acura automotive technician. He has been known to disassemble cars in my garage, including my own! An automotive technician in my own garage! YES! Katie, my youngest, is a sophomore at The University of Notre Dame. It is through Katie's expertise that I learned how to use a computer! Katie's words of wisdom, "Just click and pray mom!" I prayed a lot in 1997!
Sjogren's World became a reality in January 2000. Spring and I hope we have helped a few lost souls along the way.
You need not travel that road alone... We'll walk along beside you......
Care
