About two years ago I had a very touching experience. I had retired from my counseling practice of 30 years. I was part of a group of 10 wonderful therapists who were good friends as well as colleagues. Once a year we went on a retreat to a…
Just Breathe...Compassionate Help for the PF Journey
I’ve been feeling vulnerable lately. I feel vulnerable having pulmonary fibrosis (PF), being disabled, using supplemental oxygen, and being ever-increasingly more dependent on others. What do I mean by vulnerable? Oxford English Dictionary defines “vulnerable” as “exposed to the possibility of being attacked or harmed, either physically…
I shared in a recent column that I’m going through testing for lung transplant consideration. It has been challenging, but I am grateful because I know many pulmonary fibrosis patients do not have this opportunity. Being poked and prodded is exhausting, stressful, and sometimes painful. But it…
Last week, I wrote about my brain-fog struggles. It’s common to wonder, “Why am I having so much trouble thinking clearly? Is it from pulmonary fibrosis?” I was able to run this question by Noah Greenspan, a doctor of physical therapy who specializes in cardiovascular and pulmonary diseases. He…
Lately, I’ve noticed I’m not thinking through things as well as I used to. It is very hard for me to accept since clear thinking was a strength for me. I was diagnosed with pulmonary fibrosis four years ago. Here’s what my brain fog looks like. Forgetting information…
Last week, I wrote about the top three things I wish I’d known when first diagnosed with pulmonary fibrosis. I shared what a difference it would have made to ignore information online about life expectancy, start exercising as soon as possible, and practice breathing exercises. Today, I’m sharing…
I’m coming up on the fourth anniversary of being diagnosed with pulmonary fibrosis. It’s caused me to ponder what I wish I’d known before my diagnosis. Three things are at the top of my list. Ignore information online about life expectancy My disease progressed rapidly because it…
It is so hard to get used to using supplemental oxygen. I still remember my shock and anger when told I would have to cart oxygen around whenever I moved about. I couldn’t believe it! I had a few choice words to say to my doctor…
All pulmonary fibrosis (PF) patients go through hardships. We watch our lungs and health decline and we suffer emotional pain as we process our foreshortened lives. Grief becomes a companion as we emotionally process all we endure. This disease takes a toll on us. Talk to yourself with…
After I was diagnosed with pulmonary fibrosis, I began evaluating the best way to spend the precious time and energy I have left. Against a backdrop of grief, I made a list of the things I wanted to complete before I passed. Some goals involved increasing…
