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"At first, my symptoms were subtle. I felt a slight
numbness in my hands and a tingling in my legs,"
Upchurch said. "I started dropping things, and
I was tired, but I attributed that to not getting a
lot of sleep after having twins."
Today, Upchurch continues to adapt to the challenges
of living and working with a chronic illness. A divorced
mother of three, she commutes two hours a day to her
job, and returns home at night to care for her children,
including a son, now 12, who was born with Down syndrome
and multiple disabilities.
Despite the challenges in her life, colleagues characterize
Upchurch as warm, open and upbeat. On a bad day, you
may find her using a cane, but on good days she appears
to have boundless energy.
"I've been extremely fortunate that my disease
hasn't progressed drastically since my initial diagnosis,"
Upchurch said. "But I work with MS patients every
day and I've seen how their conditions can change in
the blink of an eye."
She admits that working with patients who have similar
chronic illnesses can be both uplifting and frightening.
"I've developed many close, long-term relationships
with my patients because I spend three to eight hours
a day every month with them in the infusion clinic,"
Upchurch said. "The downside is seeing patients
with MS who are my age and younger who are doing badly.
I can't help but wonder if that's going to be me someday."
Upchurch often finds herself serving as a mentor to
newly diagnosed patients and their families. She advises
them to live each day in the present and to not obsess
about the future. She also encourages them to prioritize,
and tells them how in her own life spending precious
moments with her children has become much more important
than having an immaculate home.
Through the years, Upchurch has learned to shed her
Superwoman persona. If she is especially tired after
a long day, she doesn't hesitate to ask her colleagues
for assistance.
"I tell my patients that when you have a chronic
illness, you need to treat your emotional and physical
energy like a bank account," Upchurch said. "Carefully
choose where you spend your energy because if your expenditures
outweigh your balance, you aren't helping anyone, including
yourself."
In her frequent speaking engagements, Lewis also encourages
patients to live in the moment and to integrate their
chronic illness into their life without letting it define
their identity.
"At the beginning of my lectures, I used to say,
'Hi, I'm Kathleen and I have lupus,' " Lewis said.
"Yet I never mentioned that I'm also a mother,
grandmother, writer and counselor. I've learned to make
my illness a part of who I am but not allow it to take
over my life."
Carrie McGrath, RN, has learned this lesson well. In
1988, she was an 8-year-old diabetes patient at Children's
Hospitals and Clinics in St. Paul, Minn. Today, McGrath
has returned to the hospital as a nurse, working with
children who have diabetes and other chronic illnesses.
"I had a wonderful diabetes educator when I was
a child," McGrath said. "She definitely influenced
my decision to become a nurse."
McGrath still remembers the fear and uncertainty that
she felt after being diagnosed with diabetes. She remains
insulin dependent, using an insulin pump for regular
treatments.
"Both patients and their families have so many
questions after a child is diagnosed with diabetes,"
McGrath said. "Children want to know if it means
they can't participate in sports anymore. Parents want
to know if it's something their children will eventually
recover from, or if it will lead to an early death."
When McGrath tells patients she's a lifelong diabetic,
they are often surprised. At 23, she is youthful and
enthusiastic, a recent graduate of nursing school.
They sit enthralled when she describes how she's always
led an active and athletic life despite diabetes. Her
warm demeanor reassures children as she speaks to them
as both a nurse and a former patient.
Carrie Cady, RN, of Children's Hospital and Regional
Medical Center in Seattle, also serves as a role model
to young patients and their families.
In 1990, Cady was diagnosed with asthma. Several years
later, she was diagnosed with rheumatoid arthritis,
fibromyalgia and Sjögren's syndrome, a chronic
disease in which a patient's autoimmune system attacks
the moisture-producing glands.
Cady keeps her chronic conditions in check by taking
numerous medications, but even her prescriptions can't
prevent the occasional bad days, when even minor tasks
prove challenging.
"There are times where I can't open a baby bottle
because my rheumatoid arthritis is so bad," Cady
said.
For the past 16 summers, Cady has volunteered at Stanley
Stamm Children's Hospital Summer Camp, a nonprofit camp
where young patients from the hospital enjoy a week's
respite. The camp was founded 37 years ago by Stamm,
a cardiologist at Children's Hospital, Seattle, who
wanted to offer children a summer venue where they could
have fun while continuing their medication and treatments.
Cady and other staff donate their time as volunteers
at the camp.
"I work with a lot of children with asthma and
cystic fibrosis at the camp. We use our inhalers together
and make a game of counting puffs," Cady said.
Children at the camp enjoy fishing, horseback riding
and an array of other activities. All children are encouraged
to participate despite their limitations.
"I remember one summer when a girl with cystic
fibrosis wanted to ride a horse and one of the nurses
walked beside the horse carrying an oxygen tank,"
Cady said.
Cady, who is fondly known as "The Bubble Nurse"
for the wand of bubbles she always carries around her
neck, hopes that her zest for life inspires her young
charges.
"The children know I have several chronic illnesses
but they see me blowing bubbles, shooting squirt guns
and acting silly at the camp, and they realize that
life can still be good," Cady said.
Contact Linda Childers at eastbaypr@aol.com
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