This is a plea for your help and guidance. I would love to understand the experiences of others as I try to navigate your thoughts and emotions when someone asks “What is “wrong with you.” It would be particularly helpful to hear from a young adult (up to…
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The holidays are coming! They are a challenge to negotiate as a pulmonary fibrosis patient. Here’s some tips I’d like to share to make the most of the holidays while taking good care of yourself. It is normal to have a mixture of feelings…
I’ve been going to pulmonary rehab for about two years. It takes place at a very different kind of gym. It is a pulmonary rehab gym for people who have lung conditions and who need to be monitored (oxygen levels and heart rate) while exercising.
I don’t know about you, but for me adjusting sure is hard. I just got back from a visit to University of California, San Francisco, for my six-month check-up at the Interstitial Lung Department. It’s one of three places in California where lung transplants (along with Stanford…
Treating yourself with kindness and compassion is essential for a healthy and balanced life, especially for those with pulmonary fibrosis As a marriage and family therapist for the past 30 years, I have walked in the trenches with people going through very difficult times. I…
I read an article yesterday in Pulmonary Fibrosis News that told about a woman who was diagnosed with idiopathic pulmonary fibrosis (IPF) in June. Her disease is progressing so fast that she needs a double lung transplant now – like now. She is on the transplant list, but doctors say that…
Sometimes it is hard to keep going when you have pulmonary fibrosis The basics of living life and traveling are now such a challenge for me … like breathing, walking, being tired, having to bring oxygen and needing help. I recently attended a Writer’s…
I recently had a victory in a fight for oxygen, and wanted to share what I learned through the process. I had to fight for oxygen … pretty basic need, right? Like many of you, I’m on supplemental oxygen 24/7. It’s been two years, and it has been a fight…
Inspired by an article written by a wonderful writer, and talented individual who I’m lucky enough to call a friend, I have decided use this post and take a look back at what my life was like a year ago, before IPF. This feels significant in a few different ways,…
If you’re like me, you may have different reactions to the phrase “advocate for yourself.” I get it. Your experience, upbringing and background may embrace this message wholeheartedly, or you may shrink back from it either because you were taught not to advocate for yourself, or you simply…
