What does ‘disabled’ look like with myasthenia gravis?
“That spot is saved for someone who really needs it, someone living with a disability.” You can unclench your fists…
Articles by Shawna Barnes
What I wish for in a patient-provider relationship
Doctor to patient: “I went to medical school. I think I know what I’m doing and what is best.” Patient…
3 ways I manage PTSD as someone with MG
Post-traumatic stress disorder (PTSD) is one of those taboo topics many people don’t seem to want to talk about. Good…
How I’ve been fighting brain fog with games and passive listening
What’s that word again? You know, the thing where you can’t remember and your thoughts are fuzzy? Oh yeah! Brain…
Why fix what’s not broken in my treatments for MG?
Rystiggo (rozanolixizumab-noli). Vyvgart (efgartigimod alfa). Soliris (eculizumab). Ultomiris (ravulizumab-cwvz). The one thing these four names have…
How to plan a stress-free wedding when you live with chronic illness
Daisies and strawberry shortcake. Blue tartan and outdoor seating. Home and a new name. On Aug. 10, my husband,…
Grieving who I used to be because of myasthenia gravis
Grief comes to me more often than I care to admit. It doesn’t just come when a loved one…
3 mistakes I made on my myasthenia gravis diagnosis journey
Six years to a tentative diagnosis. Seven years to a confirmed diagnosis. Eight years to thymectomy. Eleven years…
3 lessons I learned after long-term prednisone use for MG
Note: This column describes the author’s own experiences with prednisone. Not everyone will have the same response to treatment.
When people tell you to ‘fill your cup,’ what do they mean?
The song “Build Me Up Buttercup” always plays in my head when someone tells me to “fill your…