Tuesday, June 20, 2006

Pain transforms nurse into activist

AZCentral.com, originally uploaded by rsdscrpsnews.

Pain transforms nurse into activist

Rare ailment, consequences derail her life

Corinne Purtill
The Arizona Republic
Jun. 16, 2006 12:00 AM

It started with nausea, then sweating. Before long, Vicky Jerdee had passed out in her nursing scrubs on the bathroom floor of the Mesa hospital where she worked, unable to speak or move.

From that terrifying day in July 2003, Jerdee's life began to crumble under the weight of a chronic pain condition later diagnosed as Reflex Sympathetic Dystrophy Syndrome.

She lost her job, her house, her health insurance and many friends. A pain she described "like someone's pulling your bones out" stole her energy and freedom, keeping her confined to a rented Ahwatukee Foothills home, where she lives with her teenage son and daughter and her mother.

If she knows she has to go to the grocery store on a Wednesday, she'll start mentally preparing herself for the exhausting trip on Monday.

But Jerdee is fighting back.

In recent months, the 46-year-old has become an outspoken advocate for chronic pain sufferers.

Jerdee is attending a conference today on pain and public policy at the Hyatt Regency Phoenix.

She's been tapped to serve on the board of the non-profit Arizona Pain Initiative, and has been asked to testify before a state Senate committee on the issue.

The work has helped her reclaim the life that chronic pain tried to steal.

"It makes me feel like I'm someone again. I have a purpose," she said.

Jerdee had been working as an endoscopy nurse when her symptoms started. Her condition soon deteriorated to include blurred vision, garbled speech, a foggy memory and peripheral neuropathy, a painful form of nerve damage.

She was diagnosed with RSD, a disorder that causes nerves to send constant pain signals to the brain. It can be brought on by an injury or accident, though Jerdee said she had neither. The Reflex Sympathetic Dystrophy Syndrome Association estimates that between 200,000 and 1.2 million Americans suffer from it.

Jerdee stopped working in November 2003, lost her Ahwatukee Foothills home not long after and moved in with a friend in Mesa. Her two teenage children went to live with their father.

Jerdee had worked as an emergency room nurse and remembered the patients who came in complaining of vague pains in an attempt to score drugs. She remembered the scorn she had sometimes felt for them, and feared that she saw the same look of disbelief in the eyes of doctors and nurses now caring for her.

"You hesitate to go because you don't want people feeling that way about you," she said. "It's degrading."

Without health insurance, Jerdee says she spends about $250 to $300 per month out of pocket for medications, including methadone for the pain.

She started attending a support group for people with RSD. The facilitator told her about the Arizona Pain Initiative, a Phoenix-based non-profit that focuses on pain education and advocacy.

After contacting the group, Jerdee was asked to serve on the board.

With her medical experience and ability to translate medical jargon into layman's terms, "we thought that she was a perfect person to do this," board secretary Anne White said.

Jerdee said she's also been asked to testify before a state Senate task force.

Jerdee's activism has energized her, though pain still shapes her days. She is hoping to qualify for Social Security and Medicare benefits and resume an injection treatment that eases her pain.

She also hopes to get a spinal stimulator, an internal device that blocks the pain response to the brain.

Her goal is to return to nursing within a year. In the meantime, knowing that she can help others who are in her situation keeps her going.

"They're dependent on me and I'm not going to let them down," she said.

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