REEDSBURG Emily Rogers has progressed so much during her three-year battle with a rare autoimmune disease that she can write her name again and hold a sandwich without squeezing it so tightly that it squishes between her fingers.

Those are major milestones for Emily, 45, a former teacher and mother of three who has been limited to a wheelchair since Devic's disease took over her body by producing antibodies that attack her spine.

Much of the credit for her progress goes to an expensive drug and the surgical insertion of a pump that sends a muscle relaxer directly into her spinal fluid. But equally important, say Emily and her husband, Phil, was learning to navigate the health care maze before, during and after those treatments.

While the debate over national health care policy rages on following last week's Supreme Court ruling upholding the Affordable Care Act, the efforts the Rogerses have made at being personally involved in their care has been both harder and more effective than any government policy.

"Your health care is a 'we' thing," Phil said, adding that Americans must learn about their illnesses and how to work with their providers and insurers to get the care they need.

"You have to be engaged in your health care just like you should be engaged in your education."

The couple believe health care, whether administered privately or publicly, is a life game that is won or lost by attitudes, work ethic, knowledge and persistence.

They know Emily's quality of life and recovery depends on how they play it.

"This is the lot that we have," said Phil, a principal and teacher at the St. Peter's Lutheran Church school in Reedsburg. "We pray about it. Our church continues to support us and pray for her and for us through it."

But they know they can't sit still and wait for miracles to occur.

Originally posted here:

We The People: 'Be your own advocate' in health care