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The Joy of Being Alive

I was never gifted with numbers, but I always felt confident when it came to languages. When my emotions are too overwhelming to comprehend, I look for answers in written work, or I simply start writing down how I feel. It helps me deal with big emotions and determine why I…

Why Don’t We Get to ‘Ring the Bell’?

One of my closest friends, a fellow MG warrior and mom to an MG teen with juvenile arthritis, told me tearfully one day about how her daughter never got to “ring the bell.” You see, her daughter’s primary juvenile arthritis (JA) treatment was chemotherapy infusions administered in an infusion suite…

The Importance of Finding Your Tribe

At school, I wanted to belong to the “cool crowd.” I used to watch them from the outside and was so jealous of the way they seemed to glide around school, owning every little aspect of it. We all wanted to be in their little clique because they were the…

Being a Patient Is Hard Work

It takes serious work to be a patient, regardless of the disease you have. The lay person’s portrayal of chronic illness and the subsequent clinical perceptions of patients leave a lot to be desired in their inadequate awareness, and, at times, acceptance of our reality. These impressions barely scratch the…

The Value of the Good Doctor

The first thing I was forced to learn very quickly after falling ill is that doctors are only human. It does not matter if they are specialists, general practitioners, or retired; human nature is bound to catch up with them at some stage. As we all know, human nature is…

The Cost of Uneducated Care

During my most critical year with myasthenia gravis, I spent an inordinate amount of time in the emergency room and on various hospital floors. A good deal of the ER staff soon got to know me by name and, while clueless as to how to help my rare but potentially deadly…