Most of us crave intimacy. Not only on a physical level, but more importantly on an emotional, intellectual, experiential, and spiritual level. I am a very emotional person; it’s easy to see in my writing. I wear my heart on my sleeve. My mother always said I was the…
The holidays are complicated. And getting in the holiday spirit with a chronic illness, in the dead of winter, in the middle of a pandemic, can be, well, challenging. If you are struggling to feel the magic this season, that’s OK. If you’re too exhausted or too sad to…
A doctor once told me he wasn’t sure I’d survive until my 30th birthday. If I did, I’d likely be dependent on supplemental oxygen, unlike any other young adult I knew at the time. This week, I turned 34. Reflecting on my nearly six years with idiopathic pulmonary fibrosis (IPF)…
Being my own advocate means having to be resilient, a trait I have come to acquire. The past two weeks have really tested me, and sparked a fierce determination on my part to obtain financial assistance to help offset expenses caused by my illness. I have been researching…
The pressure we put on ourselves to live full, “successful” lives can be debilitating. Transplant recipients can be burdened with extremely high expectations for what post-transplant life should look like. Organ transplantation is an incredible gift, but those expectations can cause a lot of emotional stress and guilt. Before I…
I never understood the relationship between the heart and lungs before I was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016. As if learning my lungs would fail from this condition wasn’t hard enough to accept, I was also assigned a cardiologist to monitor my heart health, which is often…
In my previous column, I described the roller-coaster ride of my lung transplant evaluation. On Aug. 7, 2020, six years after my diagnosis of idiopathic pulmonary fibrosis (IPF), I was officially placed on the transplant list. Waiting for the call Waiting for the call was both breathtaking…
Last week, I wrote a column about needing to slow down as a patient living with idiopathic pulmonary fibrosis (IPF). Since its publication, I have spent a lot of time strategizing about how to do that. I am often guilty of saying I need to do something but neglecting…
Today’s inspiration comes from a brainstorming session I had with fellow columnists. Speaking with other people who live with rare diseases made me think about what I wanted to express in my column. I realized I feel a lot of guilt, for several reasons. Watching others struggle with PF…
I’ve always been guilty of putting too much pressure on myself. While I was diagnosed with idiopathic pulmonary fibrosis (IPF) five years ago, I still haven’t learned how to slow down and avoid putting so much pressure on myself. This is despite the disease causing me extreme fatigue, breathlessness,…
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