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…
I always have been fairly independent. When I was little I played outside alone in a small town where the “scary stories” of a big city just didn’t happen. I was lucky enough to buy my first car very early in my teenage years, which gave me…
I’m not big on hope, even though I have a sign that says “hope” on my porch year-round. Are you thinking “Wait! How can she say that? I want to be encouraged here!” I’m not big on attaching hope to:…
I have tried countless times to describe the feeling of breathlessness to the people in my life who love me and want to understand what I am going through. It doesn’t seem to matter, though, how many times I try to describe what being short of breath feels…
When living with an invisible and chronic illness, such as idiopathic pulmonary fibrosis (IPF), I suppose it’s inevitable that you will have some really hard days (no matter how much you try to find the good in each day). To put it bluntly, some days just suck.
I have a love/hate relationship with my supplemental oxygen. I use liquid oxygen at a flow of 8 litres per minute, 24/7, as well as an oxygen concentrator. I’m grateful to have it, for without it my organs would fail.
A very interesting situation unfolded the other day as I was purchasing something from our local music store. Typically speaking, when most people either see me with my oxygen, or learn that I am living with a terminal illness, they are not sure what to say. They may…
Please accept my apologies if this post is a little bit of a downer. One of the things I promised myself when I started writing this column was that I would be honest and include the good, the bad, and the ugly about idiopathic pulmonary fibrosis (IPF.) There…
A while ago I was feeling tired and found myself debating whether I wanted to put out the energy to get together with some friends. Going out and lugging my oxygen around is a lot of effort, and it wears me out. It hit me that this was…
There is tons of literature that endorses the idea of connecting with others for support when you’re faced with a chronic illness, such as idiopathic pulmonary fibrosis (IPF). I know that literature very well because I thoroughly examined it throughout the writing of my masters thesis this…
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