One thing we hear a lot about while living with a serious chronic illness is the importance of staying positive. But what does that mean? The “importance of positivity” is a common trope both inside and outside the chronic illness community. While a lot can be…
Columns
“There is ebb and flow. Leaving and coming. Flight and fall. Sing and silent. Reaching and reached.” – Ally Condie I am unfamiliar with the author of that quote and her thoughts behind it. But as I prepared to write my one-year anniversary column, it grabbed my attention. The…
When you hear May 5, do you smell warm chips and salsa? Or taste a tangy margarita? Most of us probably think about Cinco de Mayo. No judgment. I, too, typically enjoy Cinco de Mayo by celebrating at a favorite Mexican restaurant. But on May 5, the pulmonary hypertension community…
Taking care of my body requires getting the right nutrition, exercising in ways I can handle, and paying attention to my mental health. Lately, I have noticed that anxiety and fatigue have increased at the end of my day. When I brought this up…
One of the hardest things about the diagnosis of a progressive illness is grappling with how your disease will affect your future independence. It can be scary and painful to think about how, as your disease progresses, you will become more and more reliant on other…
“I have watched fear change us. I have watched fear ride roughshod over our families, organizations, and communities.” – Brené Brown, “Braving The Wilderness.” In the above quote, lecturer Brené Brown was speaking about fear after 9/11. Lately, we are again learning to live in fear. We are…
Lately, I have been reflecting on the power of words. It started one sleepless night, as I wondered how often I have thought or spoken the words pulmonary hypertension since my son’s diagnosis. Even after his heart and lung transplant relieved him of that dreadful condition, not a day has…
A few years ago, I thought that talking openly about my fears and worries was a sign of weakness. I convinced myself that being strong meant putting on my bravest face for others to see. I may have fooled some people in my life with my “everything is going…
The COVID-19 pandemic is a stressful time for everyone, but it can be particularly stressful for those trying to manage long-term medical conditions. Many people with serious health problems are seeing their doctors’ appointments canceled, postponed, or changed to telephone or teleconferencing appointments. Since my…
I often hear that I’ve changed since my pulmonary hypertension diagnosis. I constantly speculate about whether this might be true, and then repeatedly realize it’s pretty accurate. Surviving every day with a rare and life-threatening disease like PH takes a toll not only on my body, but also my…
When my son was diagnosed with pulmonary hypertension (PH), his doctors were proactive in caring for his physical health and forthright about maintaining his mental wellness. He was 8 years old and facing adult-sized concerns and realities. To help process all that was happening, they referred him to a…
When living with significant health problems, one must balance not only personal worries, but also those of family members and friends. This can be a lot to handle. One of the things that upset me most after my pulmonary hypertension diagnosis…
