Since I was diagnosed with pulmonary hypertension (PH) in 2017, I have struggled with people in my life who don’t understand what my illness is or how it affects me. PH is a rare disease that…
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In life, we often try to control things by trying to predict the future. But no matter how hard we try, we are not in control. There is only one person in charge: God. Living with a rare disease like pulmonary hypertension (PH), I relinquish that control more often…
When my son was diagnosed with pulmonary hypertension, we drove from our home in Washington state to California to seek care from a specialist at Lucile Packard Children’s Hospital Stanford (LPCHS). A social worker put us in contact with the Ronald McDonald House (RMH) at Stanford, where we hoped…
I’ve written in previous columns about the difficulties I’ve experienced while navigating romantic relationships with a chronic illness. This week, I wanted to write positively about finding love with pulmonary hypertension (PH), and some of the little things…
I have heard it said that self-care is not selfish. While I may agree with that consciously, my subconscious still has not quite embraced it. When my son Cullen was diagnosed with pulmonary hypertension (PH), we traveled from Washington state to California to seek help from a specialist. We…
If you have found yourself standing in a warm shower as tears stream down your face, you are not alone. It is no secret that living with a rare disease like pulmonary hypertension affects one’s mental health. Although I have touched on this topic before, I want to devote this…
When a new doctor enters my hospital room and asks for a brief medical history, the best I can offer is a 15-minute overview of the last few years of my life. Realistically, for a proper understanding of my medical condition, my story should start…
One thing we hear a lot about while living with a serious chronic illness is the importance of staying positive. But what does that mean? The “importance of positivity” is a common trope both inside and outside the chronic illness community. While a lot can be…
“There is ebb and flow. Leaving and coming. Flight and fall. Sing and silent. Reaching and reached.” – Ally Condie I am unfamiliar with the author of that quote and her thoughts behind it. But as I prepared to write my one-year anniversary column, it grabbed my attention. The…
When you hear May 5, do you smell warm chips and salsa? Or taste a tangy margarita? Most of us probably think about Cinco de Mayo. No judgment. I, too, typically enjoy Cinco de Mayo by celebrating at a favorite Mexican restaurant. But on May 5, the pulmonary hypertension community…
Taking care of my body requires getting the right nutrition, exercising in ways I can handle, and paying attention to my mental health. Lately, I have noticed that anxiety and fatigue have increased at the end of my day. When I brought this up…
One of the hardest things about the diagnosis of a progressive illness is grappling with how your disease will affect your future independence. It can be scary and painful to think about how, as your disease progresses, you will become more and more reliant on other…
