Everyone feels the effects of a bad night’s sleep. But for those with chronic illness, sleepless nights can be debilitating. Since being diagnosed with pulmonary hypertension (PH), I have found that if I sleep poorly, I struggle to function, which can make surviving a day at…
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One-sided relationships are unhealthy, so why have one with your doctor? It’s important for both patient and doctor to be committed to establishing an open, honest, and respectful rapport. From pediatric care to adult care, I have guided and encouraged my own son to initiate healthy bonds with his medical…
I can’t count the number of times I’ve heard U.S. President Theodore Roosevelt’s assertion that “comparison is the thief of joy.” Although I’ve tried to apply its lesson to my everyday life, on some days, I find myself trapped in a cycle of comparisons.
A while back, I posted in the PH News Forums about my fear of judgment. I wrote about living with PH and feeling like I am being judged. At times, I feel like a reality star. I picture the TMZ crew and paparazzi following me around. In reality, I…
When my son Cullen was diagnosed with pulmonary hypertension (PH), my husband and I would have gone to the ends of the earth to help him fight it. When asked if we would be willing to drive from our home in Washington state to California to seek care and treatment…
After 15 years with a rare and chronic illness, I have learned much about navigating life and chronic disease. Pulmonary hypertension (PH) is complex and challenging to predict. If you are like me, lacking control over your day is frustrating and anxiety-inducing. But despite those unpredictable days, we…
After I was diagnosed with pulmonary hypertension (PH), the online community I found via social media was a huge comfort. It immediately made me feel less alone, and in the three years I have lived with PH, I have formed genuine connections with people…
Have you ever nodded off at an inappropriate time? For a moment, your body gives in to fatigue. Your heavy eyelids begin to droop, and you start to ease into a peaceful slumber. It’s all going well until you are jolted awake by the force of your head dropping like…
“Everyone knows they’re going to die, but nobody believes it. If we did, we would do things differently.” – “Tuesdays with Morrie” by Mitch Albom Maybe it is because of my work in hospice care, but talking about death and dying doesn’t bother me. Many others, however, are…
“Numbers don’t lie.” Members of my medical team have used this phrase, and I have caught myself saying it lately, too. Doctors say “numbers don’t lie” when congratulating me on improving my pulmonary function test or when my six-minute walk score is better than my previous one. Unfortunately, this…
Learning how to take medications can be a hard lesson for children, but my son Cullen managed it like a champ when he was diagnosed with pulmonary hypertension (PH). I know adults who struggle to swallow pills, but at 8, my son could take them without issue or complaint. It…
“You look so good.” “What’s wrong with you now?” “But you’re too young to be on oxygen.” “Wow, you don’t look sick at all.” “But you went out last night.” If I had to guess, I’d bet that…
