Adversity is something rare disease patients face on a regular basis. It can take many forms, but it often involves facing a challenging situation or doing something against all odds. When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I don’t think I had any…
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Not having control over a situation is one of the worst feelings; I wouldn’t wish it on anyone! Unfortunately, many patients living with chronic illness often feel this way, and we just have to learn to live with it. Following my 2016 diagnosis of idiopathic pulmonary fibrosis (IPF),…
What choices do you have when you have idiopathic pulmonary fibrosis (IPF) and lung transplant isn’t an option? I’ve been told by more than one patient that they were told to go home and spend the time they have left enjoying a rocking chair on the porch. Whether that is actually what they…
I always try to find meaning and purpose in the smallest of things, and that practice led me to a realization the other weekend. I was trying to nurse back to health one of our hens, which had become ill in the past month. We did everything we could to…
The sound of overhead explosions and bright flashes of light caused by fireworks. The sound of squealing tires followed by breaking glass. The smell of smoke and the sound of a smoke detector. The sound of the alarm on your oxygen concentrator in the middle of the night. Each of…
I have learned a lot about idiopathic pulmonary fibrosis (IPF) over the years. Following my diagnosis in 2016, I read everything I could about this life-threatening lung disease through online forums, research articles, and various websites. My biggest takeaway was that disease progression is nonlinear and looks…
The calendar of any rare disease patient is a marvel, with its complexity and efficiency. I’ve become both a master and a failure in constructing mine. I continue to miss the mark on making time to live life to the fullest. My schedule gained new elements when I was…
My name is Sam, and I read a lot. I enjoy reading. I’m not asking for help or seeking an intervention. I read a wide variety of material and have favorites across many different genres. In the fiction category, I enjoy the Mitch Rapp series, originally by Vince Flynn. In…
Have you ever tried to explain to someone who has never experienced a rare disease how patients can develop lasting relationships with their care team? I have, and it’s often met with skepticism. Many people see their physicians only once or twice a year. But that isn’t the case for…
When I first began experiencing symptoms of idiopathic pulmonary fibrosis (IPF), my condition worsened quickly and kept me from doing many activities I enjoyed. And yet, it took 13 months for me to receive a diagnosis. This time frame felt like an eternity and left me and…
