Almost a century has passed since the Carter Family recorded their classic country song, “Will You Miss Me When I’m Gone?” Like any good Appalachian ballad, it is an ominous and mournful melody of life and death, love and loneliness. These concepts are presented as simply and distinctly as…
Spoiler alert: It is not flowers and balloons. A couple of weeks into our stint in the critical care unit due to my husband’s aHUS, a surprise visit from my sister showed me the value of little things and great thoughtfulness. While my husband, Ronald, struggled to simply live,…
Celebrities seem to have it all. Their lives look so easy and enviable. We watch them sing, dance, act, and then share a laugh with late-night talk-show hosts. Their albums, shows, and movies make millions. They wear designer clothes and their hair is perfect. We often assume these beautiful people…
Medications come with warning labels. Maybe rare diseases should, too. Warning: Atypical hemolytic uremic syndrome may cause secrecy in patients and caregivers. aHUS is a rare and life-threatening condition, and there are many reasons not to share a diagnosis or prognosis. Within the family, patients may want to shield loved…
The Serenity Prayer Most people know about the Serenity Prayer. It is a favorite among people with alcohol or drug addictions or those struggling to stop blaming themselves or others for the happenstance of life. Many people have memorized it: “God, grant me the serenity to accept the things…
My husband’s general practitioner, hematologist, and nephrologist each care for the same number of patients with aHUS as I do: one. However, these doctors all handle a few hundred other cases with various ailments and concerns, whereas this is the entirety of my practice. Therefore, I am a specialist. I…
When society shut down at the onset of the COVID-19 outbreak last year, many healthy extroverts panicked. Their world changed instantly and drastically, and they had a hard time coping. Welcome to our world As a caregiver to someone with atypical hemolytic uremic syndrome (aHUS) for the previous…
One of the first casualties of taking on the role as my husband’s caregiver was high heels. That’s ironic, since he is the one who convinced me to wear them. From flats to heels Before we met, I always wore flats. It was sneakers and loafers on my own…
I like that series of Books for Dummies, authored by experts in various fields. Written for the masses with no experience required, they employ a straightforward vocabulary in an easy-to-follow format. Shakespeare, calculus, cooking, quantum physics, beer, and Ireland are among the subjects tackled in these paperback…
Five years ago, my husband, Ronald, and I were overwhelmed with financial worries. Our business was struggling thanks to four broken contracts, a leaky roof, and an impatient banker. We worked long hours, juggled credit cards, sold the convertible, chased every lead, and hoped we could save what we…
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