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…
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…
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…
My husband is retiring in a couple weeks. I’m not of retirement age, but sometimes life happens and decisions are forced upon us. (Photo by Ann Reynoso) My husband and I have quite an age gap. He is 16 years older than me, making our retirement stages uneven. While…
I had an epiphany last week: It’s hard to find a job! My first thought was that it must be my age. My experience doesn’t matter because I don’t fit into the work culture. (I’d never heard of “work culture” until I saw it on LinkedIn.) My second…
I just finished watching the episode of “Star Trek: The Next Generation” in which Capt. Jean-Luc Picard was taken by the Borg. In one scene, the Borg turned him into a machine, or in Trekkie terms, a “cyborg.” This made me think of my “extra appendages,” my oxygen tanks.
One of the most important blessings in life is having a strong support group. A support team may consist of family members, friends, or a community of people. My support team included three of the greatest people in my life: my husband, daughter, and mother. It is important…
I will celebrate my two-year diagnosis anniversary on Dec. 11. On this day, which changed my life forever, I was finally diagnosed with lymphocytic interstitial pneumonia. My head was spinning when I heard these words. What is this illness? I wondered. Is it curable? It must be curable, I…
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