SjSWorld Staff
Care
SjSWorld
Co-Founder,
Communications Director,
Reporter
Hi, my name is Billie and I live in Akron, Ohio. My "illness" hit suddenly in 1993 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 here in Akron 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's Mellen Center for Multiple Sclerosis. I finally found a wonderful neurologist who could help me. With a combination of drugs, 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 Syndrome affects the nervous
system it can "mimic" Multiple Sclerosis. Since
my symptoms are primarily those seen with MS, my neurologist
suggested I join an MS 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 possible MS diagnosis. We became friends and did a fair
amount of “symptom” comparing — I finally had
found someone like me!
I personally would like to encourage others
who do not have a definite MS or Sjögren's diagnosis
to come join us! The "road" to a 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 will be building a home for me very soon! I am
“retiring” to Charlotte, NC in the near future.
My oldest daughter, Amanda, also lives in Charlotte and is
a “Management Information System” consultant. This
is a bonus for me; sunshine and two of my children all in
one package! What else could I ask for? Help with my car?
Gregg, my youngest son, is employed by Chesrown Honda as an
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 graduating from
high school this year. 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!
SjSWorld became a reality in November 1999.
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......
Billie - Care
