Feeling Like a Lab Rat in a Medical Maze

It's been six-plus years that I've been navigating the medical maze to care for a family member with a chronic illness. Over and over, I've become frustrated that “I don’t know what I don’t know.” Sometimes, my search to fill in those knowledge gaps has resulted in a solution that doctors loved, and they would say “I wish all my patients did this.”

Sometimes, the answer was found with other patients traveling a similar road. The advice came from strangers online who offered up their own experience for no other reason than to ease the path of other children and families dealing with similar issues. The sharing and caring, and swapping of strategies was invaluable.

And then there were the frustrations that were never answered. These were often the bigger issues – health insurance plans, the marketing strategies of pharmaceutical companies, the broader question of how our doctors are taught about patient care in medical school.

The creation of this blog comes from a desire to bring all the lessons together. To make it easier for the patient and the caregiver to navigate the medical maze. To support doctors who can knowledgably and accurately treat each individual. To empower ourselves to actively participate in our own physical, spiritual and emotional well being.