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.In most of my conversations with people who also have idiopathic pulmonary fibrosis, a painful loss they have experienced as a result of their disease is no longer being able to work. Some people have to stop working altogether, while others have to reduce their hours from full-time…
Obligations and what you “should” do as a patient living with idiopathic pulmonary fibrosis (IPF) can be all-consuming. I have learned a lot about myself this week after talking to friends and colleagues. One of the things I must let go of throughout this journey is this idea…
I had an experience last night in the emergency room that has left me thinking a lot. So I decided to turn my thoughts into a column — and I am curious to hear how those of you also living with idiopathic pulmonary fibrosis (IPF) feel about patient…
For the friends and colleagues who see me regularly, many of you know this week was particularly challenging for me. In addition to recovering physically from my latest medication dose and being sick, I also was dealing with the emotional swings of the steroid injections. My puppy…
I have always been active and independent growing up. I like to meet new people and explore the outdoors. I enjoy learning and am committed to professional development. And I get excited and enthusiastic about new initiatives in my personal life, in my education and in my career.
This column comes from a place of physical and emotional exhaustion, so please bear with me. I know I’ll regain the physical strength in a couple of days, and I know the emotional toll will decrease as well, and I’ll see things a little more clearly soon enough. As Annie…
When you’re living with a life-threatening illness such as idiopathic pulmonary fibrosis (IPF), it often feels like everything is on overdrive. What I mean is that I often feel oversensitive to the comments people make, or how they might react to seeing me on oxygen, and this…
After a week filled with others doing things to help me, including spending more than six hours on a weeknight helping me move to a new home, I was thrilled to be able to do something for someone else this weekend. The joy I felt from cooking…
Do you ever feel that sharing difficult news about yourself is a burden on your friends? I have been struggling a little with this recently and, as a result, I am feeling very alone. Writing this column is not easy. To explain further, I have an upcoming…
With Rare Disease Day 2017 coming up tomorrow (Tuesday, Feb. 28), I have been thinking a lot about responsibility. As someone living with a rare disease (idiopathic pulmonary fibrosis, or IPF), I am feeling a bit of responsibility around my efforts to raise awareness for this disease, and…
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