Grief comes to me more often than I care to admit. It doesn’t just come when a loved one passes away. When a person acquires a rare disease like myasthenia gravis (MG) later in life, as I did, grief seems to come in cycles. Usually I try to…
The Whispered Roar – a Column by Shawna Barnes
Six years to a tentative diagnosis. Seven years to a confirmed diagnosis. Eight years to thymectomy. Eleven years to find a treatment plan that worked. These are the landmarks of my myasthenia gravis (MG) journey. The starting point was my medical retirement from the U.S. Army…
Note: This column describes the author’s own experiences with prednisone. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. It’s been a year since I started writing about the weight gain I experienced while taking high-dose prednisone to manage…
The song “Build Me Up Buttercup” always plays in my head when someone tells me to “fill your cup.” But how do we fill our cups when we’re too weak to pour from the kettle? This topic has been on my mind lately as I dive into self-care…
Can, or should, you get a massage if you have myasthenia gravis (MG)? Will the use of oils or lotions cause a symptom flare? I see these two questions floating around the interwebs frequently. I’m lucky in that my Veterans Affairs (VA) benefits include this thing called…
Hey, there! How’s the weather by you? Yeah, it’s a scorcher here, too! No, this isn’t just small talk. If you look at forecast maps across the country right now, there are some crazy summer storms brewing. The temperatures have been above average across the nation (at least according to…
The sloth and a snowflake. Why in the world would a person, community, or organization choose those two symbols to represent myasthenia gravis (MG)? Surely there must have been better critters or weather phenomena to represent the one-of-a-kind rare disease that makes us … move … slowly. Huh. Then…
“You should drink celery juice and cleanse your body. It will cure you!” “I’m a distributor for this supplement company, and I know it will make you feel better and cure your autoimmune disease.” “Have you tried yoga?” These are the top three “cures” I’ve heard from usually well-meaning…
Being a teen mom, Iraq, husband No. 3, myasthenia gravis, moving halfway across the country, getting a new team of specialists, and a 5k. What do these random things have in common? They’re all hard things I’ve overcome. On the backside of Memorial Day, I find myself reflecting on…
The good ole Army still has a few things to teach me nearly 12 years after my medical retirement. “Piss-poor planning makes for poor performance” was drilled into my head as a combat medic. When you fail to plan, sh*t invariably hits the fan. But even when you do…