This is not easy to talk about. I don’t even want to discuss it with my husband. I already feel awkward being intimate while wearing a nasal cannula and don’t want to add another unsexy health issue. My husband and I have always had a strong attraction to each other.
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…
What a rough three weeks my family has been having. I’ve had to put a hold on writing my column because of events outside of my control. Once again, I am angry with this rare illness of mine. It not only puts a hold on my life, but…
Teaching has been a passion of mine since I earned my masters degree in sociology from the University of Houston-Clear Lake (UHCL) in 2013. Becoming a college professor gave me a sense of self-worth. I was proud of my accomplishments, especially since I obtained my degree so late in…
My plan for the holidays was to binge-watch all the Rocky movies. I love this character as played by Sylvester Stallone, and I can relate to how much he struggles to find his way through what life has thrown at him. I particularly identify…
Most of us crave intimacy. Not only on a physical level, but more importantly on an emotional, intellectual, experiential, and spiritual level. I am a very emotional person; it’s easy to see in my writing. I wear my heart on my sleeve. My mother always said I was the…
Being my own advocate means having to be resilient, a trait I have come to acquire. The past two weeks have really tested me, and sparked a fierce determination on my part to obtain financial assistance to help offset expenses caused by my illness. I have been researching…
Today’s inspiration comes from a brainstorming session I had with fellow columnists. Speaking with other people who live with rare diseases made me think about what I wanted to express in my column. I realized I feel a lot of guilt, for several reasons. Watching others struggle with PF…
“But if these years have taught me anything it is this: you can never run away. Not ever. The only way out is in.” — Junot Díaz I have always been a social person. I need human contact and I have always enjoyed spending time with family and friends,…
I am finally on the road to a better understanding of my disease, lymphocytic interstitial pneumonia (LIP), and the course it’s taken throughout my life. In my previous column, I mentioned that I would soon have my second visit with my new pulmonologist. During this visit, I finally got…
I am an advocate for my rare disease, but I still can’t describe it. Several weeks ago, I went to the dentist with my husband. It was a hot and humid day, as it always is here in Texas. I was carrying “Cooper,” the name I gave to my…
As a research sociologist, my goal is to research anything and everything I need answers to. I often become so preoccupied with this search that it becomes an obsession. Many people turn to online research for answers about health issues, and I am no different. When it comes…
How do you learn to love your body while struggling with a rare illness? I used to ask myself this almost daily. I love to eat, and comfort food provides just that — comfort. Vegetables and fruits sound delicious, but they wouldn’t be the first thing I run to…
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