The definition of patient advocacy can vary from patient to patient, and can include many different roles for those involved in any type of chronic illness advocacy campaign or project. What also varies is the patients’ comfort level when getting involved in different initiatives that might focus on…
Columns
The body and mind can do such strange things in response to stress. More and more I am hearing about the physical impact of stress on friends, colleagues and family members requesting a break from work, or managing to recover quickly from a cold only to become sick…
Pulmonary fibrosis patients, like myself, have to deal with lots of symptoms and hardships on a daily basis because of our disease. One of those difficulties for me is trouble sleeping. Sleep problems come from a variety of sources Among them: Medication side effects. Some of those…
In my experience, online virtual support groups are growing — allowing conversations among people living with various sensitivities or intolerances, to those diagnosed with cancer, lung diseases, etc. It’s really interesting to think of how peer support has changed in the past decade with internet use. Personally, I scroll through…
I have grown accustomed to using supplemental oxygen and often overlook people who stare at me, wondering about the young adult who seemingly cannot breathe. While I don’t seem to notice when people stare, it was apparent to friends with me last week. Multiple people asked me,…
Pulmonary fibrosis patients have lots of unique medical needs, especially concerning obtaining medication and supplemental oxygen. A few weeks ago, I wrote two columns about my fight to get liquid oxygen as well as tips to help readers obtain…
I have read many articles on young adults living with a chronic illness since being diagnosed with idiopathic pulmonary fibrosis (IPF). Some I can relate to, while others don’t resonate with me at all. The articles I find most beneficial are ones that suggest tangible tools to help people cope…
Being diagnosed with pulmonary fibrosis is an overwhelming experience In a moment, our lives are changed forever when receiving this diagnosis. How do we absorb being diagnosed with a terminal illness? Where do we get answers to our many questions? How do we get support from others who…
As much as I desperately want to be involved in my friends’ social lives and participate in work events, charity fundraisers, and milestone celebrations such as weddings, stag and does, and baby showers, I find that lately, I have been feeling the stress of obligations. What is…
How do you get liquid oxygen? Last week I shared my struggle to get my oxygen provider to bring me liquid oxygen. It took me five months, but I was finally successful. In case you missed it, last week’s column also included a video demonstrating how I…
