Last Saturday, Bionews, the parent company of this website, celebrated Rare Disease Day with a virtual event. We planned the event for about 300 participants from the rare disease community who would get together and discuss mental health and chronic illness. They included patients, caregivers, researchers, and…
I have a problem with inertia. The forces that get my engine firing seem to start late, work slowly, and then combust and burn all at once. It’s a long fuse to a full gas tank. Forget the spark plugs and the carburetor. Whether it is…
We talk a lot about the importance of finding and maintaining hope in the rare disease community. While I agree this is important, I also want to acknowledge it isn’t always easy while living with idiopathic pulmonary fibrosis (IPF), a rare and life-threatening lung disease that eventually steals your ability…
I don’t know if humans will recover from this pandemic: the lack of touch, the resocializing to keep our distance, the physical isolation. I have dreams where I’m in groups of happy people touching … and those dreams are actually nightmares. My mom is a hugger.
Since the start of the pandemic, levels of stress, frustration, and confusion have risen to troubling levels. It seems that many of us also are experiencing more concern over new, rapidly spreading coronavirus variants. When I first heard about the variants, I broke down and cried. I felt defeated…
Last month we moved into our new home in Hawaii. My husband, Jonny, flew back to the mainland immediately for several months of Army training, so I was left to get settled on my own. I started tearing through all the boxes and piles of things to make the place…
At a recent hospital appointment, I was asked to complete a survey about my experience. As a patient with a chronic illness, I am at the hospital a lot and am regularly asked to complete surveys. While they sometimes seem time-consuming and redundant, I know they are the hospital’s way…
“Did you wash your hands?” That’s a question I was very familiar with long before the COVID-19 pandemic. My mom, Diana, is an obsessive hand-washer. She is also obsessive about making sure everyone else does it. She’ll merely sense my dad’s craving for…
I thrive in an organized and structured environment. As a young adult, I guess I’m a creature of habit and predictability, but my parents say I’ve always been this way. Last April, I wrote a column about the importance of routine and how the pandemic has disrupted our normal…
My journey to becoming a caregiver for my mom, Holly, was a quick one. I learned about her prognosis and treatment options while she was en route to the ICU to await a lung transplant. The exacerbation of her acute idiopathic pulmonary fibrosis was so sudden that there was…
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