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The emergency room has never been a particularly amicable place. It is an assembly point for people in discomfort searching for assistance with varying degrees of medical problems, from broken bones to food poisoning. However, if you have a rare disease like myasthenia gravis (MG) or a complicated medical…

When you live each day unsure if it will be your last. If you fear that the next time you walk outside and look up at the sky to feel the sun’s warmth on your face, it’s the final time you will do so unaided. Or if you don’t know…

Hope is an empowering word with an ambiguous interpretation. For each person, hope might look just a little different, but its crucial need in our lives remains integral.  When I was first diagnosed, I thought of myasthenia gravis and the emotional, mental, physical, and even spiritual journey…

This past weekend, I attended my doctor’s “special patient day,” a morning event with tea, snacks, and entertainment by local musician Joshua na die Reën. The staff from my doctor’s office was there, including the nurses who take care of me during day treatments and chemotherapy, administrative staff, and the women who assist…

The diagnostic process and the journey to correct a disease by effective treatment can seem linear on paper. The reality rarely matches up. In that reality, many with myasthenia gravis become aquatinted with emotional and mental fatigue, the uncertainty of where to place trust, and the weariness of…

Like most chronically ill people, I often get the line, “I don’t know how you do it.” To be completely honest, nor do I. I just do exactly as healthy people do. I wake up, get up, survive, and go to bed. On some days, I have an emotional breakdown in…

Choosing your healthcare provider can be as important and daunting a challenge as finding your life partner. You need someone who will advocate for you and who has your best interests at heart. You need someone who is passionate about what they do and who wants to make a difference.

Myasthenia gravis (MG) is nothing short of fickle. We are unwelcome companions, thrust into its foibles and constrained by its unpredictable nature.  Subsequently, MG has made my life an uncertain seesaw. In the blink of an eye, I have danced near death, and in the next, I’m seemingly…

Hospital visits that end up going less than smoothly either make or break your spirit. Physical strength comes and goes in the lives of the chronically ill, but it’s our emotional toughness that gives us that mind-boggling endurance no healthy person can seem to comprehend. It is almost like a…

My husband and I have a cat and two dogs because I believe no home is complete without pets to love. Our animals sleep in our bed and come along on family trips — they are our “fur-children.” As my health has declined, I’ve come to see these pets as…