Before I got sick I thought doctors knew everything. I thought doctors would know exactly what to do if I was ever unwell, and that I could just mindlessly follow their advice. My experience with chronic illness couldn’t be more different. I remember the first time…
Columns
Among the many challenges of living with a life-threatening condition are the daily demands it places on both the patient and the caregivers. A life-threatening illness isn’t something one can push to the back of the mind. Every day, people face the need to assess and address myriad symptoms, side…
As a child, I enjoyed writing. My Moma always reminds me of the “I’m sorry” letters I wrote when I did something wrong. Writing cards and notes and mailing them is something I have always enjoyed. Once my parents divorced, we moved around often. This made it difficult for me.
When I first named my column “Recharged and Rewired,” the word “recharged” referred to my use of oxygen. I was thinking of my oxygen home filler system I needed to “recharge” my portable oxygen tanks. At the time, I didn’t go anywhere without making sure…
Society doesn’t make it easy for people with disabilities and health conditions, including in the workplace. Historically, people with disabilities have struggled to hold down jobs. People with pulmonary hypertension (PH) rarely work full time, as it can be physically…
I attempt to take a deep breath, but tightness squeezes my chest. Pain follows, as if someone is crushing not only my lungs but my ribs, too. I woke up the Friday before Memorial Day to this overwhelming yet familiar scenario. Because of pulmonary hypertension (PH), I also battle…
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…
