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…
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This is a difficult blog to write I’ve been making decisions about how to spend my limited time and energy wisely. I was hoping to bounce back after I experienced a decrease in lung function about two months ago. But a trip to my doctor caused me…
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…
I sat down to open my mail a few days ago and received what felt like a slap in the face. Shame hurts. My local utility company sent me a report letting me know that I was using 161 percent more…
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.
