In recognition of Rare Disease Day Feb. 29, Bionews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare campaign was aimed at uplifting people with rare diseases by encouraging them to share their stories and perspectives. The…
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The other day, I was heading home from my intravenous immunoglobulin (IVIG) infusion, grateful to be back on schedule after my recent insurance delay. I was mindlessly singing along to whatever was playing on the radio, which turned out to be Matchbox Twenty — and I realized that…
Yesterday, my doctor cleared me to return to the office, effectively ending my COVID-19 isolation. After testing positive more than two weeks ago, and feeling quite sluggish for several days beforehand, yesterday’s at-home test came back negative. What a relief. Thankfully, as I previously mentioned, I was able…
As I write this, I just learned of the passing of former U.S. Secretary of State Colin Powell. Admittedly, Powell had so many achievements that I’m not sure which title is most appropriate — general, secretary, or chairman. In the coming days and weeks, no doubt many words will be…
Physicians often see us at our worst. Remembering to be mindful of how we treat them could go a long way to help bolster their thinning ranks, which results in fewer hours. Physician turnover and the reduction of clinical hours in the United States costs an estimated $4.6 billion annually,…
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Why I Said Goodbye to Twitter
Last month, I decided to take a break from Twitter. It is the only social media site I use, despite the grumblings of Facebook-obsessed family and friends. My only regret is not doing it sooner. Ditching Twitter wasn’t as hard as I expected. When I told my 20-year-old niece about…
I recently came across a blog post on MedPage Today titled “A Letter to Patients with Chronic Illness.” Although it was written nearly 15 years ago, it’s as relevant today as it was then, revealing oft-obscured insight into the frame of mind of our doctors. Its author, “Dr. Rob,” shares…
I am sick of being sick. Tired of being tired. Sick and tired of being sick and tired. That’s a fairly common sentiment among people living with chronic illness, since “chronic” means it never seems to go away. I’ve been living with sarcoidosis, rheumatoid arthritis, fibromyalgia, and more for…
Since the deaths of Dolly Parton and Tim Curry last week, social media has been flooded with moving tributes. “Jolene,” “9 to 5,” and “The Rocky Horror Picture Show” soundtrack stay with us for their cultural and emotional impact. Due to the music, lyrics, and nostalgia, classics like these endure…
Eyelids fluttering open to a new day, I mentally searched my body for signs that anything was different. But a sore arm with a Band-Aid was the only evidence of my vaccination 12 hours earlier. No headache, fever, chills, or any more fatigue than usual, which I was informed…