The lyrics in Natalie Merchant’s song “Wonder” make me think of my son, Cullen: “Newspapers ask intimate questions / Want confessions / They reach into my head / To steal the glory of my story.” Not that there is glory in living with pulmonary hypertension (PH) or receiving a…
“Why can’t I just be happy for someone else? Why am I still so hurt when this has been my reality since I was 22? There are other ways to have children — I should be grateful for that.” So many thoughts and questions come to…
Sometimes I feel like having a health condition is a full-time job. I also have a “real” full-time job. Before I was diagnosed with pulmonary hypertension (PH), I never considered how much admin would be involved in having a serious health…
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…
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