Being diagnosed with pulmonary fibrosis is tough, don’t get me wrong. If I could wave a magic wand and not have PF, I would. As I’ve grieved over the last three and a half years, I’ve come to appreciate some positives related to this diagnosis. To learn more…
Some people would call me unlucky to have life-threatening idiopathic pulmonary fibrosis (IPF) at the age of 28. Even more would agree that I have bad luck if they knew that the prognosis for this disease was three to five years. I am approaching my second year after diagnosis,…
Today, Feb. 28, is Rare Disease Day. Rare Disease Day is a movement founded by EURODIS, a nonprofit alliance that is the voice for people living with rare diseases in Europe. Since its inception in 2008, Rare Disease Day has taken place on the last day of…
Two weeks ago, I was blessed to celebrate another birthday — 61 to be exact! As a PF patient, you know how significant this is. I wonder if every birthday is my last. These thoughts happen for me with every holiday and anniversary, too. I normally would not…
Those immersed in the world of idiopathic pulmonary fibrosis (IPF) know how quickly things can change from stable to critical. Regardless of whether you are a patient, caregiver, friend, or advocate, it comes as no surprise to hear how serious this disease can be. Numerous factors can contribute…
In the past, I thought anxiety entailed someone feeling upset, worried, or nervous. I thought it was situation-based, meaning something triggered it. And I thought anxiety usually manifested in a physical way that was visible to others, such as crying, shaking, sweating, or fidgeting. The older I get, the…
As a PF patient, I love many hobbies that I can no longer do. I miss the normal activities of life that are now too cumbersome or simply wear me out. One of the pastimes I can still enjoy is going to the movies. This is something I…
If you have read my previous columns, you are likely aware that my life before being diagnosed with idiopathic pulmonary fibrosis (IPF) was very different than it is now. This is something I often write about because I can’t believe the dramatic transformation from who I was…
Living with a life-threatening illness like idiopathic pulmonary fibrosis (IPF) evokes a plethora of feelings throughout the course of the disease. Some are positive. At times, a patient is content, grateful, or hopeful. Other times, the feelings are negative and a patient could experience anger, fear, guilt, or…
Using supplemental oxygen is a mixed bag. It is wonderful because it gives us the oxygen we need to keep our body healthy and to stay alive. It is hard due to many reasons I shared in a previous column, including dealing with the tubing. I’ve discovered…
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