Having a rare disease results in many complex problems, some of which can be debilitating. This has been my experience over the past six months as I’ve struggled with pulmonary fibrosis (PF) and heart issues due to atrial fibrillation with rapid ventricular response. While managing my health…
Modern Day Mutant
— Ann Reynoso
Ann Reynoso lives in Alvin, Texas, working and volunteering as a patient advocate for those with disabilities and communities that struggle with inequalities in health and social care. She was diagnosed at age 53 on December 2019 with lymphocytic interstitial pneumonia and pulmonary fibrosis. Her wonderful support team includes her husband and daughter. She writes both to regain a sense of achievement, post-diagnosis, and to make sure no one feels alone in their journey of navigating rare illness.
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I recently underwent a bronchoscopy and bronchoalveolar lavage. While I was confident that I was under the care of competent professionals and trusted that the procedure would be conducted efficiently, I experienced a brief moment of apprehension and unease just before it. A bronchoscopy allows doctors to view your airways…
New Year’s resolutions are an annual tradition for many of us. We make promises to ourselves to do something better in the year. But this year, I’ve decided to do something different: Instead of resolutions, I plan to make new memories. Why make resolutions I know I can’t keep? After…
Curveball is a baseball term, but it also can apply to life when something surprising or unexpected happens. It’s been several months since my last column, and in that time, life has thrown me a curveball. I’ve been constantly battling my illness, and so much has happened. I am…
I have begun a new, educational phase in my life: I’m working to become a patient advocate. Honestly, I’d never thought about patient advocacy until I was diagnosed with pulmonary fibrosis in December 2019. But it became extremely important to me when I realized that my…
I have a weight problem. But the bigger problem is that no one believes that I don’t choose to be this way. I’m an overweight, middle-aged woman fighting pulmonary fibrosis (PF) and going through menopause. As such, it takes double the effort to lose weight — especially since…
My inspiration for this column came from looking out my window, which was built high up and close to the ceiling. I call it “God’s Window,” because every morning, I can look up to the heavens, and every night, I can see the stars. It’s beautiful when the sun is…
Growing up in the Mexican culture, I was introduced to a lot of home remedies to treat everything — coughs, colds, stomachaches, fevers, bug bites, and even “el mal de ojo,” or the “evil eye.” Mexican folk medicine was an important part of my upbringing, but as an…
It’s been awhile since I’ve really felt defeated, but life has a way of reminding us sometimes of how truly vulnerable we are. Dealing with a rare illness like pulmonary fibrosis can complicate things even more. The last two months have been tough for my family and me. We’ve…
I never thought I’d take for granted the caregiving I receive from my daughter, at least not on purpose. But that’s exactly what I was doing. I knew I could count on her on the days I needed someone to drive me to my appointments, for instance, because when my…
It’s been one year since I joined Bionews, the publisher of Pulmonary Fibrosis News, as a columnist. At that point, I was trying to find my way in life with lymphocytic interstitial pneumonia (LIP) amid the COVID-19 pandemic. I never thought I’d have so much to write about.
Coping with a rare disease can be lonely. After I was diagnosed with lymphocytic interstitial pneumonia (LIP) in 2019, my world crumbled and shock set in. I started searching for answers on the internet, looking for any research about my illness, and talking with other patients. It’s a…
“Wow, that is a rare lung disease. I have heard of lymphocytic interstitial pneumonia [LIP], but I have never known or treated anyone with this disease. Your case will be interesting.” That’s what my cardiologist said when I went for my first consultation regarding my hospital stay for symptoms of…
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