One of my biggest fears is being a nuisance to others. As much as possible, I try not to rely on anyone and have learned to become stubbornly independent. This is why living with idiopathic pulmonary fibrosis (IPF), a debilitating and life-threatening lung disease, has been so hard on me:…
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This is not easy to talk about. I don’t even want to discuss it with my husband. I already feel awkward being intimate while wearing a nasal cannula and don’t want to add another unsexy health issue. My husband and I have always had a strong attraction to each other.
The word “identity,” which refers to a person’s “distinguishing character or personality,” according to Merriam-Webster, may sound simple to understand, but it’s actually often confused with other terms. Before you read any further, take a moment to think about your own identity. When you have a description in mind, please…
It’s normal for people to come and go in our life. Our circle of friends changes when we change schools, start a new job, get married or divorced, and have children. Being diagnosed with idiopathic pulmonary fibrosis (IPF) had the same effect on my group of friends. As my IPF…
Have you ever gotten into the car, started driving, and then snapped out of a trance at your destination with no memory of the trip? Let’s call it driving on autopilot. Relying on your reflexes to operate a vehicle is certainly one way to get from point A…
No one will ever convince me that COVID-19 is just a cold. Unfortunately, I’ve heard this sentiment echoed by healthy friends since the start of the pandemic as a means of downplaying public health measures meant to curb the spread of the virus. But having had COVID-19 twice now, I’ll…
What a rough three weeks my family has been having. I’ve had to put a hold on writing my column because of events outside of my control. Once again, I am angry with this rare illness of mine. It not only puts a hold on my life, but…
Dictionaries play many roles in our lives. In early childhood, we use a dictionary to associate pictures with words. In early education, we learn to use a dictionary to define unfamiliar words and look for alternative meanings. In the computer age, we create spreadsheets with data dictionaries. Dictionaries fill in…
Given the various unfortunate events happening around the world, including the evolving war between Russia and Ukraine, I’ve been reflecting on the many ways my family and I are blessed. At times, I’ve been guilty of not realizing my privilege. I’ve always had the basic necessities, including a roof…
Internet scams are widespread and can infiltrate every aspect of our digital presence. The prevalence of online dating scams, for instance, was recently highlighted in the trending Netflix documentary “The Tinder Swindler.” Scams have become particularly rampant in rare disease communities, and are spreading rapidly via social media platforms,…
