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.
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…
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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…
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…
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.
“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…
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…
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…
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…
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 —…
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…
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…
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…
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…
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