I’m the almost-pour-milk-onto-my-mom’s-plate-instead-of-in-her-cup kind of tired. The dump-potato-chips-instead-of-cat-food-into-my-cat’s-bowl kind of distracted. The place-things-on-my-parents’-stairlift-instead-of-carrying-them-up-or-down-the-steps kind of exhausted. My name is Colleen Steele, and I have caregiver burnout! It’s not the first time I’ve burned the candle at both ends. I cared for my son Cullen, 25, many times through this level…
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Recent news headlines have sparked significant concern among those of us in the pulmonary hypertension (PH) and other rare disease communities. The massive budget and staff cuts across multiple federal agencies are particularly troubling, prompting a flurry of conversations both online and in private. As we navigate these challenging…
I think it is more effective to watch for good advice instead of asking for it. An Inc. article titled “25 Excellent Pieces of Advice That Most People Ignore” covers words of wisdom that often go in one ear and out the other. “It’s easy to find someone to…
During my senior year of high school, mornings were always stressful. I attended a massive school of about 3,000 students. My driving partner and I lived on the edge of our district, so arriving on time was a constant struggle. In an attempt to be in class by 8 a.m.,…
In addition to physical challenges, living with a complex condition like pulmonary hypertension (PH) also means fighting mental and emotional battles. I constantly feel a push and pull between frustration and gratitude. But these are moments that can teach me a lot about myself and the people I love.
My relationship with counseling and mental health has adapted and morphed during the many years I’ve battled chronic illness. When I was diagnosed with pulmonary hypertension (PH) in 1999, mental health was discussed far less frequently than it is today. I was also only 4 years…
I’ve written more than once about the support I’ve received from my immediate family throughout my health journey. I’m fortunate to have parents and siblings who are invested in my health and willing to accommodate our family time together, always allowing me to be a fully present participant. Through the…
This time of year can feel heavy as many of us start reflecting on resolutions or goals we haven’t yet fulfilled. Maybe you promised yourself you’d eat a healthier diet or get more sleep, but life had other plans. It happens to the best of us. For those in the…
It’s a beautiful day in the country for what appears to be the beginning of autumn. There are acres of trees, mostly green except for a few that have changed to gold. They’re casting a shadow over a lake, but on the other side sun is glistening on the water…
Are you managing chronic pain alongside pulmonary hypertension (PH)? Did it disrupt your holiday plans? If you answered yes, you’re not alone. Many folks in the PH and broader rare disease communities share similar frustrations with having to adjust plans because of unrelenting pain. Dealing with chronic pain…
Many a new year has been greeted with the saying “Out with the old, in with the new.” That is a fair declaration of a calendar flip, but it’s implausible that people will change just as easily on Jan. 1. I’ve often honored New Year’s as if it were the…
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…
