The words “palliative care” often frighten those of us living with a life-threatening illness. This is because the term historically has been associated with end-of-life care due to its link with hospice care. But the two terms were formally separated in 1990, when the World Health Organization officially recognized palliative…
Living With IPF — Charlene Marshall
Charlene Marshall 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.
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Exercise is important for people with chronic illness. But as someone living with idiopathic pulmonary fibrosis (IPF), a disease characterized by progressive scarring of the lungs and difficulty breathing, I know working out is easier said than done. I’ve also found some strategies that make it easier for me.
Learning to use supplemental oxygen as a young adult was arguably the hardest part of my idiopathic pulmonary fibrosis (IPF) diagnosis. My life changed once I required the help of a plastic tube with two prongs up my nose to complete basic tasks that most people take for…
I have never met a cohort of people more resilient than children. I am reminded of this every day in my career, as I am privileged to walk alongside families facing hardships and discuss with parents and caregivers how to help their children through difficult times. As a trained therapist,…
Many people around the world complain about the cold, dark winter months. This is even true for Canadians who “should” be used to the frigid temperatures our country experiences every year. I know more people dislike the cold than the heat, but cold weather doesn’t pose health risks to…
I began hearing the term “toxic positivity” this year, and the pandemic has illuminated the term’s meaning for me. According to The Psychology Group in Fort Lauderdale, Florida, toxic positivity refers to “the excessive and ineffective overgeneralization of a happy, optimistic state across all situations.” Since the beginning of…
Last week was the first of an eight-week Pulmonary Wellness Foundation (PWF) peer support group. I have been collaborating with the PWF since January to build this unique peer support group for patients with pulmonary fibrosis. It was surreal to finally launch it. Though I’ve always advocated for the…
People who endure a traumatic experience often divide their lives into before and after the trauma. I’ve heard this is true of those who survive a transplant in the lung disease community. Pre-transplant life is very different than post-operative life. I anticipate this will be true for me post transplant;…
Exercising with a chronic lung disease is not for the faint of heart. Recall your most strenuous workout or physical activity: Your heart beats rapidly, you struggle to catch your breath, and sweat beads down your forehead. Now imagine doing that with lungs that feel stiff and painful upon inhalation.
It’s common for young adults in their early 30s to plan for their future. For some, this might include planning for a beautiful wedding or having a family. For others, it might mean traveling the world, buying a dream home, or landing the ideal job. My ideal future would include…
As we launch into Pulmonary Fibrosis Awareness Month this September, I personally believe there’s a lot that can be done to educate others and to raise the profile of this cruel and life-threatening lung disease. I look forward to sharing in an upcoming column more tangible ideas about how…
At some point in everyone’s lives, we feel overwhelmed by the pressure to perform, whether it’s getting good grades at school, excelling at playing an instrument, or receiving a promotion at work. Many of these are normal pressures one expects throughout their lives. However, patients with idiopathic pulmonary fibrosis (IPF),…
The world must learn to address our widespread anxiety about the ongoing health crisis. As a patient living with idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease that makes me increasingly vulnerable to respiratory infections, I’m familiar with this anxiety. But life must continue, and it’s necessary to find a…
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