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Ashland woman battles severe pain of RSD
By Jared Glovsky
For The Sounder It should be recognized that, as human beings, we all have
a love-hate relationship with physical pain. On the one hand,
nobody likes to feel it, but on the other, it’s a remarkable
function in Nature’s flawless design. Pain protects us.
Without pain, we’d sit on a hot stove, or wind up electrocuting
ourselves, or cutting ourselves. Pain is our body’s response
to a violation.
But for Renee Uitto, Ashland, pain has become, literally,
a way of life, which she’d give anything to be rid of.
Uitto suffers from what’s known as reflex sympathetic
dystrophy (RSD). It is a chronic, progressive neurological
condition that affects skin, muscles, joints and bones. In
layman’s terms, it essentially renders the brain unable
to shut off pain. It also increases the body’s sensitivity
to pain, so that something that should not be causing any
pain becomes excruciating.
On account of her RSD, Uitto lives with continuous pain,
in her feet, her legs, her hands. And it’s spreading.
“I first got sick in 2000,” she says, “back
then it started in my feet. It was this severe, burning pain,
so bad I could not touch my feet to the floor.”
Such pain would be terrible in any circumstances, but Uitto
says it’s especially terrifying when you don’t know
what’s causing it, and there’s no apparent reason
for it to be happening.
RSD usually is the body’s reaction to some kind of
trauma. A broken leg, for instance, or a heart attack; but
it can also be triggered by something more minor, like a sprained
ankle. In 2000, when Uitto first began exhibiting symptoms,
there was not nearly as much information as there is today.
Seven years has made a difference.
Uitto did receive a head trauma around that time, but since
the RSD first developed in her feet, and the condition was
believed to be directly connected to the part of the body
where the trauma occurred, many doctors were baffled.
“It was Doctor Cunningham here in town who first said
the words RSD to me,” Uitto says, “he referred me
to a neurology specialist in Marshfield, and he’s been
with my every step of the way since then.”
Uitto was born in Milwaukee, moved to the Chequamegon Bay
area in 1968, where she graduated from Washburn High School.
She’s been married to husband Howard for 32 years (October
18), has three kids, 7 grandchildren, and some ‘great
in-laws’, all of whom she says, particularly her husband
Howard, have been incredibly supportive.
“Howard’s been wonderful,” she says, “stuck
by me from the beginning.”
The development of RSD came as a shock, because Uitto was
quite active prior to the affliction. She was always going,
going, going, even took part in the first couple years of
Book Across the Bay. Now, she must get around in a motorized
wheelchair. Something like Book Across the Bay is no longer
an issue, and even the simplest things like going to watch
her grandchildren play soccer, or their holiday musicale at
school, often turns into an excruciating experience.
Granddaughter Kerri tells of an incident this summer:
“Renee’s always been a fighter,” Kerri recalls.
“From day one, she’s insisted on walking, even when
the doctors told her not to. She refused crutches until it
was absolutely necessary, and when she eventually needed the
chair, she was not happy about it.”
At a soccer match in July, Kerri says they could tell right
away that something was wrong with Renee.
“She looked very uncomfortable,” says Kerri, “her
legs were shaking visibly. As it turned out, the thing that
was causing so much pain were gnats, tiny little insects,
landing on her legs.”
With RSD, the body doesn’t distinguish between levels
of severity. Pain is pain; and it’s always bad.
Moreover, Uitto must have the way cleared for her when she
attends crowded functions, like her grandchildren’s school
concerts, lest someone inadvertently brush up against her.
And she can no longer hold her grandchildren without tremendous
pain.
“That was especially hard,” she says, “I waited
all my life for grandkids, you know, and right around the
time the RSD developed, my first was born.”
Uitto says she has undergone a variety of ‘guinea pig’
treatments for the condition, from morphine pumped into her
spine to electroshock intended to numb the nerve endings,
to plastic casts for her legs, all of which have resulted
in a dashing of spirit.
“I go in with hope every time,” she says, “and
I always come out disappointed. That’s hard to take.”
The only effective treatment for RSD right now is mere medication
to help mitigate the pain, and alleviate depression, another
common side affect of the disease.
“There’s no direct treatment or cure,” she
says, “so the goal must be making patients as comfortable
as possible.”
It’s Uitto’s hope to raise awareness about this
disease, not only among those who might be suffering from
it, but the medical community as well.
“It’s kind of an invisible disease,” she
says, “doctors are only now learning more about it, and
it does not get the same attention as other things.”
She says proof of this can be found in the frustrating tendency
of well-meaning people to remark that she ‘looks fine’,
thus implying that the disease is really no big deal. There
are no apparent outward symptoms, and so, Uitto says, people
can’t understand her body’s betrayal, what she’s
going through.
By raising awareness, Uitto and her family are looking to
make a little of their own hope. Uitto is a member of an on-line
RSD support group, and she and Kerri are working to put together
a RSD walk next spring, similar to the Relay for Life or the
Memory Walk, a chance for folks to come together, reflect,
and share their own stories.
Uitto urges anyone that is experiencing inexplicable pain
to contact their physician as soon as possible.
“Like most diseases,” she says, “there is
a greater chance for effective treatment and even possible
remission if it’s caught early. Mine was not caught early,
and I’m suffering now, because of it.”
Folks interested in learning more about RSD, getting involved
with next spring’s walk, or sending their well wishes,
may e-mail: kuitto@centurytel.net
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