We commonly think of change as a new experience. It can be unfamiliar and require effort to come to terms with, but it also can be a repeat of old challenges, forcing you to relive the past. Whether it comes in an old form or new, is welcome or not,…
Have you ever walked in the door and immediately been greeted by your fur baby? If so, you know how good it feels to have been missed — even if you’re greeted with sloppy kisses and a hyperactive bouncy dog. Mine often gets twisted up in my oxygen tubing as…
The morning of my 29th birthday, on May 30, looked different than it did a year earlier. On my birthday last year, I rolled out of bed crying in pain. It was only a few weeks after I had a thoracotomy to repair a congenital heart defect. I…
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…
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…
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