All those years, doctors did an excellent
job of treating my symptoms;
however, many times either
the old symptoms would reappear,
or I’d get new ones. Doctors suspected
that I had lupus, and I was
evaluated twice for lupus. Both
times the results were negative.
Later, I was advised that I didn’t
have enough markers - the magic
number being four symptoms happening
at the same time - to determine
a definite lupus diagnosis. I
just continued seeing doctors who
treated the symptoms as they occurred.
Therefore, I was able to
continue my career in education as
the doctors tried to keep my symptoms
under control. In 2004, I retired
after more than thirty years of
continuous, successful employment.
When I first retired, life was beautiful.
I spent my days being involved
in many activities that I
was not able to do while working.
I exercised four days a week, had
breakfasts and lunches with my
retired buddies, took advantage of
free seminars and workshops, participated
in two book clubs, and
began traveling more.
While on a cruise in November of
2005, I experienced something
very alarming. One night my family
and I were having dinner while
cruising the Caribbean. After dinner,
I stood to go to our cabin and
discovered that I could barely
move my legs. I held on to Cecil as
we slowly made our way to our
cabin. The cabin felt extremely
cold to me, and my joints and muscles
hurt as if I had been hit by a
truck. I dressed in layers of nightwear
and a heavy robe, took some
aspirin, hiked the thermostat up to
80 degrees, put my feet under pillows,
and got under all the blankets
that were in our cabin. I don’t
think I had ever felt so cold or experienced
such throbbing pain as I
did all through that night. I finally
fell asleep in the wee hours of the
morning and felt better when I
woke up for the day. During the
remainder of the cruise, I tried to
stay as warm as possible. Little
did I know at the time that being
exposed to lots of sun and high
temperatures might not have been
the best thing for me.
After the cruise, I experienced
even more symptoms: itchy, flaky
scalp, hair loss, no appetite, and
extreme fatigue. We were determined
to find out what was wrong
with me. Because my primary care
physician suspected lupus or sarcoidosis,
he aggressively sought to
find an accurate diagnosis. He researched
both diseases and thoroughly
reviewed my medical history,
my symptoms, and my laboratory
results. I finally received a
definite diagnosis - systemic lupus
erythematosus (SLE) - lupus. I
didn’t like the lupus diagnosis, but
I was relieved and hopeful that I
would get the help I needed.
National Institutes of Health (NIH)
describes lupus as a chronic (longlasting),
complex, mysterious, unpredictable,
and potentially devastating
autoimmune disease that can
affect many parts of the body, in-
(Connued on page 44)
Internaonal Pain Foundaon—43