A popular phrase people like to say when discussing the climate is, “If you don’t like the weather, wait a minute and it’ll change.” Living with a serious illness often can feel this way, too. You might wake in the morning without issue, and by early afternoon experience an onslaught…
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After several weeks in the hospital due to complications from COVID-19, I couldn’t wait to go home. On the day of my discharge, I thought the healing process from that and other complications from coexisting illnesses wouldn’t take too long. I gauged this from previous hospitalizations. But what…
Ever since I was diagnosed with pulmonary hypertension (PH) in 2017, I have been determined to live as normal a life as possible. As soon as I was able, I returned to work. My doctors had told me that lots of people with PH…
My son Cullen was 8 when he was diagnosed with pulmonary hypertension (PH). During his pediatric PH years, I had the pleasure of meeting other children just like him. Kids who liked to have fun, learn new things, and express themselves through talents they were just discovering. Young people who…
What is the main thing that patients and caregivers have in common? I believe the answer is stress. Therefore, one of the best gifts you can give them is something to help them relax. Gift cards are a way of doing that. During endless days of clinic appointments or hospital…
Online support groups for rare diseases like pulmonary hypertension (PH) are essential spaces that offer people comfort. Patient forums and social media groups also can be places of support. I am involved with the PH News Forums as a…
Being human makes everyone susceptible to embarrassing moments. Some have learned to deal with them by laughing at themselves. Facepalm-worthy fumbles happen, even when dealing with something as serious as a rare disease. Medical faux pas might sound like no laughing matter, but in my experience, they can offer comic…
Whenever I go through an emotionally difficult or physically painful period in my life, I always take time for reflection. After the crying is done, the tantrum is thrown, and I have cursed, yelled, and convinced myself I can’t keep doing it anymore, I pause and allow myself to breathe.
Christmas has come and gone. Didn’t it seem a bit surreal? For me, and I’m sure for many of you, too, last year was unique in more ways than one could imagine. But we made it through, despite the challenges and disappointments that 2020 brought…
When I look at my Christmas tree, I appreciate its Christian symbolism as much as I do its beauty. There are many meanings passed down throughout history, but I have my favorites. The triangular shape represents the Holy Trinity and the upward-pointing branches are symbolic of my praise…
My sons are 13 months apart and affectionately referred to as “Irish twins.” Cullen is 21, and Aidan just turned 20. My husband and I hoped that having them close in age would foster a close friendship for life. But different personalities and a rare disease placed a gap…
“Success is the sum of small efforts, repeated day in and day out.” My son Cullen could have been the poster child for this famous quote by Robert Collier. The 20th century American author of self-help books believed that “when it comes to finding true success, one needs to…
