I’m going to be honest with you, readers. I didn’t want to write this column. I was sure I lacked the bandwidth to do it, to write it in a manner that was value-added. The previous week felt like a month and left me in search of some extended sleep.
I wasn’t even sure what topic to focus on. I have a draft column about the film “The Big Sick” that needs some polishing (I will get to it because I want to follow up on a prior column about chronic illness and disability in film and television). I called home to San Diego to check in with my parents, and my mom suggested that I write about stretching. I thought mom meant standing on my tip toes and reaching high toward the sky. I was not sure I could make that topic extend the length of a column. Instead, what mom meant, was stretching — going that extra mile and persevering in life.
Since we are a week from celebrating Thanksgiving in the U.S., I also thought about using this column as a moment to reflect on gratitude. Living with a progressive, rare disease like pulmonary hypertension is often difficult and it is not always easy to show gratitude. My PH diagnosis was life-changing, full of adjustments and hurdles that I’ve strived to overcome on a daily basis. Are there parts of my life that are tougher now, after my diagnosis with PH? Yes.
From feeling out of breath and dizzy after physical exertion to keeping a medication schedule and adjusting to a new normal with an oxygen concentrator, these are changes that feel downright burdensome. Still, this does not mean that I cannot find reasons to be grateful or find goodness in this burden. If anything, I am more grateful than I have ever been for the love, support, and encouragement I have been blessed with over the last year and a half.
Here are five things I am grateful for right now:
My circle of loved ones
I would not be here without the everlasting support of the people I hold closest to me. My family, my partner, my friends, and relatives who stand with my day in and day out. These are the people who build me up and keep me honest. They are the shoulders I stand on. For your love, jokes, advice, realness, and devotion, I am grateful.
Affording my medication
Treating a chronic illness like PH can be incredibly expensive. I have also found that it can be a bit of a challenge for me to remember to take all of my medication throughout the day. Still, I am grateful that I have the means and the ability to get affordable health coverage that gives me access to pills that help manage my PH on a daily basis. Right now, the Affordable Care Act Marketplaces are open for enrollment in the U.S. If you’re in need of coverage, check out www.healthcare.gov. Open enrollment ends on Dec. 15.
Doctors and nurses
The diagnosis road was long, tedious, and full of unknowns; it was not until I was hospitalized that I found some clarity. None of it would have been possible without the caring and attentive doctors and nurses at MedStar Washington Hospital Center and Inova Fairfax Hospital, the latter of which is still part of my medical team. I am grateful for them, and for the respiratory nursing team at Holy Cross Hospital for pushing me through a full summer of pulmonary rehabilitation.
The onset of a PH diagnosis can be extremely isolating, scary, and downright confusing. I knew of nobody, let alone anybody my age, who also lived with PH. Thankfully, I discovered the Pulmonary Hypertension Association, where I found stories of people of all ages who were living their new normal and giving this rare disease their best PHight. I also stumbled upon the social online communities: The PH Men’s PHight Club and Generation Hope: Young Adults with Pulmonary Hypertension. The people I have met through these groups — and the ones I have met through writing this column — provide unique perspectives like only PHighters can, and they have made me feel seen and heard as a member of the larger PH family.
Yes, I am grateful for perseverance, and to my mom for reminding me of its importance. Perseverance is like a long-lost friend. You might forget that he is there. You might not talk often, but when things get tough perseverance shows up in the clutch. Living with PH has reminded me of my perseverance. Along with the people in my life, it is what helps sustain me. For this long-lost friend, I am grateful.
A heartfelt thank you and Happy Thanksgiving from one PHighter to another.
Follow Mike on Twitter @mnaple.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.