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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…
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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…
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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