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…
Life is filled with the impatient burden of waiting as we eagerly look toward important milestones, big events, and even the outcomes of the unexpected — both good and bad. And while we can be restless as we keep our eyes on the horizon, these measured moments of waiting…
If I wear a high-cut top or a scarf, you won’t see the 15-cm (almost 6-inch) line plunging from my neck to my cleavage. The scar is a big giveaway that I am not a medically stable person. One of the reasons I don’t feel very self-conscious about my…
Myasthenics adjusting to reduced physical abilities must make lifestyle adaptations. To ensure the continuation of my tertiary studies, I’ve acquired disabled parking on campus. Applying for the placard dented my pride. I struggled for months before finally admitting to needing disabled parking. I could no longer walk the distance from…
What do you do when told there is a treatment that could put you into remission, but your health insurance denies it because there “isn’t enough clinical evidence”? There will never be enough clinical evidence for my rare disease because there are not enough people affected by the condition to make…
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