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Bull's-eye.
Constance Dickey, RN, would have been right on if she
had seen the trademark bull's-eye rash of Lyme disease.
But she had a different rash, knew little about the
disease, and was not overly concerned about it despite
two tick bites.
Showering after a three-day fall cleanup of her family's
rustic summer camp near Bar Harbor, Maine, she found
two deer ticks on herself, one on each shoulder. "It
kind of grossed me out," Dickey said. But she thought:
No bull's-eye rash, no problem.
"Unfortunately, that was my big mistake,"
she said.
What she's learned since then as a voting member of
the International Lyme and Associated Diseases Society
and in establishing support groups in eastern and southern
Maine from her home in Hampden, is that not every Lyme
case shows the distinct rash. Recovery through antibiotics
is excellent when it is diagnosed early, but for those
untreated-as Dickey was for five years-it is about 80
percent.
"Some people say 'Oh, that's wonderful,' "
she said. "And I say 'No, it isn't. It's not good
enough to do acute care nursing.' "
Dickey was at the height of a 25-year career at Eastern
Maine Medical Center in Bangor. She had 15 years as
an operating room nurse and nine in emergency when her
physical and mental stamina began to flag.
The diagnosis: chronic fatigue syndrome and fibromyalgia.
The remedy: a transfer from being an emergency room
nurse to the less-demanding role of nurse triage operator.
Talented physicians, Dickey said, "wanted to put
me on morphine and disability" as she deteriorated
to about 20 percent of her former self.
"This has got to be more," she told herself
and began studying Lyme disease. As she researched symptoms
and cases, it dawned on her: "This is me exactly.
I had to know why they didn't think I had Lyme disease.
I didn't know that I did, but I needed to rule it out."
An infectious disease specialist at Boston University
pulled together seemingly incongruous symptoms-too many
of them, anyway, to easily fit any single diagnosis-and
began treating Dickey for Lyme. She is three years into
an antibiotic regimen that she said has brought her
back to 65 percent normal.
Lyme is a spirochetal disease, like syphilis, Dickey
said. It's multisystemic, affecting vision, cognitive
thinking, the cardiac system, every organ in the body.
She likened the bodywide nerve pain and fatigue to what
a severely ill cancer patient might feel. "It's
a pretty profound fatigue," she said. "It's
not like you can take a nap for half an hour and get
up and do something."
Dickey is 50 years old and said she feels 80 most of
the time. Although nursing as a profession is still
out of the question, treatment has restored important
aspects of her life.
She is quilting again, a milestone, considering that
at the worst, she couldn't fathom a 2-inch square. "I
couldn't quilt, I couldn't write checks, I couldn't
add and subtract," she said.
As a professional quilter, Dickey said she is most
proud of "Pali Snails," published in Greatest
American Quilts magazine. It was the last quilt she
made before she fell ill. The snails' trails pattern
is traditional; what made "Pali Snails" special
was its vividly colored, hand-dyed and hand-painted
material.
"I made quilts when my children were little and
I just had this burning desire to carry on what our
foremothers had done," Dickey said. "I decided
to stick to bed quilts because they didn't make wall
quilts or art quilts."
To a degree, nursing is back in her life, too, although
she's still trying to figure out how to get paid for
raising awareness of Lyme disease.
Dickey spends much of the three to five hours a day
that she is able to work at the computer, sometimes
camping at www.lyme.org, virtual home of the Lyme Disease
Foundation. She answers e-mail and questions from online
participants in the support groups, steers people toward
treatment and keeps physicians focused on the disease.
The tick population is exploding across the United
States and, with it, cases of Lyme, Dickey said.
After her experience as a medical professional, from
ignoring the possibility of the disease to accepting
it for too long as chronic fatigue and fibromyalgia,
"I can't turn my back on the people who aren't
nurses," she said.
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