Facing Outrageously Expensive Copays, I Turned to Foundations for Help
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…
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’m struggling to lose weight for a lung transplant, but I won’t give up
Weight loss is a recurring topic during my medical appointments, and I frequently discuss it with my transplant team. I wrote about this a couple years ago in a column titled “Using Ozempic…
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I’m Learning to Manage Unnecessary Feelings of Guilt
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.
Breaking the Chains and Taking Back Control
“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…
Knowledge Is Power: A Recipe for Healthier Days
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…
Seeking a Better Understanding of My Rare Disease
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…
Researching My Illness: Learning to Let Go and Trust My Physician
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…
After All These Years, I Have Learned to Love My Imperfections
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 —…
Planning for Retirement Despite My Anxieties
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…
How Writing Helped Me Maneuver Detours and Work With My Limitations
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…
The Journey to Discovering My Human Superpowers
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…
Remembering My Mother, a Pillar on My Support Team
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…
‘Stay Strong and Never Hide Your Illness’
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…
