Tag Archives: patient advocacy

Mind: Learning from Disability and Disaster.

What can we learn from Hurricane Maria and the long-term loss of both roads and electricity in Puerto Rico and the Caribbean islands? Most of us do not live on an island or area readily isolated from help, yet it … Continue reading

Posted in Health, Mind: Education and Understanding | Tagged , , , , , , | Leave a comment

Mind/ Patient Advocacy. No one is an island, nor is any swan. A new perspective on discovering that we all need help sometimes.

On April 23rd, 8 days before the cygnets hatched, I made my daily visit to the mute swans who live near me. Mama was on the nest and Papa was swimming in deep water, the morning routine I knew. While … Continue reading

Posted in Mind: Education and Understanding | Tagged , , | Leave a comment

Patient Advocacy. Disability and Public Safety II. Communicating Effectively.

Communication relies on reception of another person’s language (to hear or lipread), ability to understand the content of what is said, and two additional steps. The person expected to reply must be able to form a reply mentally and then … Continue reading

Posted in Health | Tagged , , , , , , | Leave a comment

Patient Advocacy. Disability and Safety in Public I. When private information needs to be taken outside the family.

I never thought about disability until I was disabled at 25. For the first two years after my head injury, I was at home or with my husband. I didn’t think about the line between my privacy in public and … Continue reading

Posted in Health | Tagged , , , , , , , , , , , , , | Leave a comment

Patient Advocacy. When you are in the Emergency Department.

Tipsfrom my experience as a doctor, patient, and mother of a medically complex child: What to do when someone is critically ill, you have no time to think, and you need to make every conversation with doctors count. FIRST Think … Continue reading

Posted in Uncategorized | Tagged , , , | Leave a comment

Patient Advocacy. When problems arise at appointments or tests.

I started working on principles of patient advocacy after my medical career ended with a head injury and I realized I was not a smart patient. I was passive too long. It took me 5 years to get the second … Continue reading

Posted in Health | Tagged , , , | Leave a comment

Personal Health Log: Living with Pain and Dealing with Doctors I

When I was very young, identity was simple. I was my parents’ daughter, my brothers’ sister. As I grew older I knew my elementary school as ‘us’ and the other two schools in town as ‘them.’ When I got to … Continue reading

Posted in Health | Tagged , , , , | Leave a comment

Part I. International Autism Day.

As I walked through the family room, a TV announcer said today is International Autism Day. This leaves only a so-so mark on me because every day is autism day for us. Our first and only child was born apparently … Continue reading

Posted in Health, Spiritual | Tagged , , , , , , , , , | Leave a comment

Patient Advocacy. Living through the Down Days

My post-traumatic stress disorder has returned with a vengeance. Everyone who lives with a chronic disorder eventually recognizes that there are periods where it is much less a factor in daily living, some times when it is a conscious factor … Continue reading

Posted in Health, Spiritual | Tagged , , , , , , | Leave a comment

Essay. The only thing to fear…

When I was a little girl, it seemed very easy to say “I’m afraid” and have an adult almost magically appear, hug me or stroke my hair, and say things would be all right. Things change as we grow older. … Continue reading

Posted in Health, Spiritual | Tagged , , , , , , , , , , | Leave a comment