Charlene is a fiercely independent 30-something year-old who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.The “Spoon Theory” is a tool that you might find helpful when explaining your chronic illness and the limited energy it allows you for completing activities of daily living. The Spoon Theory uses spoons as a visual representation to quantify the energy. For example, you might start out…
Working with a life-threatening illness such as idiopathic pulmonary fibrosis (IPF) is difficult to manage, regardless of whether that work is full- or part-time. Exhaustion, illness, and hospitalizations often get in the way of being able to complete tasks efficiently, and may also prevent me from meeting organizational deadlines.
It has been just over a month since the successful launch of the Pulmonary Fibrosis News Forums, and we have many of you to thank. The activity created on these new forums tells us that this type of website has been helpful for patients and that it can be…
If you have been reading my previous columns, you might recall that at the beginning of the new year, I decided to write a gratitude piece as each month in 2018 comes to a close. It is hard to believe this is the case for February already!…
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…
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…
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…
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