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On Aug. 8, I had an appointment with a new neurologist. I was apprehensive about it because he would be the second neurologist I’d see at Veterans Affairs (VA) since our move to Wisconsin. I was quite happy with the neurologist I’d met when we got here, when I…

What do you do when after fighting for years you finally find a medical team that listens and a treatment plan that actually helps? Well, if you are anything like me, you take everything you know and safely push the boundaries as far as you can. Back in January,…

Last week my husband and I celebrated an anniversary on July 20. It wasn’t the anniversary of when we first met (that’s Oct. 15). It wasn’t our wedding anniversary (that’s coming up on Aug. 10). So what was so momentous that we acknowledge it every year? On July 20, 2016,…

Nobody said this life would be easy. We all endure storms we barely make it out of alive. Throw an autoimmune disease like myasthenia gravis into the mix, and life can go from “not easy” to “WTF?” But then you adjust, and “WTF?” becomes your everyday life. During this…

“But Jesus called them unto him, and said, Suffer little children to come unto me, and forbid them not: for of such is the kingdom of God.” — Luke 18:16 As a teacher, this Bible passage always resonates with me. Last November, I traveled back home to Maine…

Three years ago, after I had a thymectomy and before I started high doses of prednisone to treat my myasthenia gravis (MG), I weighed in at a comfortable 170 pounds. After I was prescribed 20 mg of prednisone a day, I managed my weight OK for a while.

Here in the United States, the richest nation in the world in terms of nominal gross domestic product, medical expenses are the No. 1 cause of bankruptcy. People in the rare disease community are well aware of this and among the hardest hit. Seven years ago, I went…

Around age 5, I began having difficulty walking. A couple of times a day I would get a strange, pins-and-needles sensation in my right leg. I was young and didn’t think much of it. When my parents became aware, they were concerned. Multiple doctors told us not to worry. My…

It’s the last Monday of June. The last Monday of National Myasthenia Gravis Awareness Month. Last week, I shared some tips for both myasthenics and our friends and family on how you can continue to turn awareness into action long after this month is over. As the month…

In the book “Man’s Search for Meaning,” Viktor Frankl writes, “If there is meaning in life at all, then there must be a meaning in suffering. Suffering is an ineradicable part of life, even as fate and death. Without suffering and death human life cannot be complete.” A…