Here we are, just a week before Christmas and somehow my brain is still stuck in November. How did that happen? This year has been a whirlwind of activity in terms of managing my pulmonary hypertension (PH) and other health challenges. The past six months have been especially rough…
Columns
“God Rest Ye Merry, Gentlemen” is one of the oldest Christmas carols. The lyrics, which have been altered numerous times to adapt to changes within the English language, are drawn from the Christmas story in the Gospel of Luke. In the 21st century, the common definition of rest is to…
I was diagnosed with pulmonary hypertension in 1999, when I was just 4 years old. My parents were obviously responsible for overseeing my healthcare at the time, particularly my mother, who has been intimately involved with my journey since the day of my diagnosis. The parent-child relationship in…
In defense of the journal
It’s been a rough day. I change into my comfy clothes, pour a cup of tea, prop up my pillows, pull up a cozy blanket, and start to write. Others might open with “Dear Diary,” but I begin with a prayer: “Dear God, please help me …” As I mentioned…
If I asked you to list every medication you or a loved one takes — along with the doses — could you do it? You might be surprised how many in the pulmonary hypertension (PH) community can’t recall those details when it matters most. This year, I learned just…
When patients arrive at a medical facility, they often expect to be greeted with a helpful smile and comforting voice, not met by an inanimate object that could add to the complications illness can perpetuate. According to the Kiosk Information Systems website, “the demand for patient self-check-in and virtual…
When I was in college and my health was in decline with pulmonary hypertension, I had a month when my symptoms became exacerbated. That led to a week of things becoming noticeably worse, which led to a day of increasing worry. By 9 at night, I felt I had…
Music deserves a note of thanks
Music is a universal gift given and received by people of all ages, ethnicities, and cultures. Its versatile melodies, rhythms, harmonies, lyrics, and instruments adapt to any person, place, situation, mood, and event. Music is the keeper of memories, the creator of dreams, and the healer of mind, body, and…
People often ask me, “How can you be so grateful while living with pulmonary hypertension (PH)?” Little do they know that gratitude is a go-to practice for me. If you’ve read my past columns, you’ll know the topic comes up frequently. As Thanksgiving approaches, many start reflecting…
My 25-year-old son Cullen has been trying to deal with trying situations since he was a child. For years he explained to both his parents and medical professionals that something more than asthma or anxiety was making it difficult for him to physically keep up with his friends. A correct…
Last October, I had an annual checkup with my OB-GYN, where I renewed my birth control prescription, which helps to control excessive bleeding in my uterus. This is vital for me because my hemoglobin levels are consistently low due to chronic kidney disease, and I can’t afford regular blood loss.
It’s been a while. Do you remember me? I fell silent in June 2023 after sharing a column titled “How I am coping since my husband passed away.” I’m an only child to aging parents, Mom, 86, and Dad, 94. When my husband, Brian Steele, died, I moved to…
Recent Posts
- FDA updates PAH therapy label with data from recently diagnosed adults
- Grateful to have offered a face and voice for rare disease awareness
- How friends can help ease the burden of living with PH and other illnesses
- Drug treatment varies widely in PAH patients presenting with shock
- Heart measurements may help predict long-term PH mortality risk
