Stepping Out of Hiding to Find a Happier Version of Myself

Columnist Ann Reynoso makes a plan to become a better person and PF advocate

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by Ann Reynoso |

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living with pulmonary fibrosis | Pulmonary Fibrosis News | Main graphic for column titled

My inspiration for this column came from looking out my window, which was built high up and close to the ceiling. I call it “God’s Window,” because every morning, I can look up to the heavens, and every night, I can see the stars. It’s beautiful when the sun is shining and calming when it’s raining.

living with pulmonary fibrosis | Pulmonary Fibrosis News | A large, arched window reaches up toward the ceiling of a room in Ann's home, and looks out at a lush green lawn, tree, and sky.

One of “God’s Windows” in my home. I love to sit in front of it while working on my columns. (Photo by Ann Reynoso)

Gazing through this window has allowed me to take a good look at my life, actions, and reactions. Because of my pulmonary fibrosis, I have been hiding away, trying to make peace with my illness by living in denial.

I’ve discovered I can be uncooperative when it comes to festivities, often making excuses about how difficult and exasperating it is to carry my portable oxygen equipment. But I’ve realized that it’s not my illness holding me back — I’m the one stopping myself from having fun.

On several occasions, I’ve been asked to join friends and family on day outings, but find myself making excuses as to why I can’t go. These may include not feeling well, being tired, or not wanting to expose myself to any viruses. I began to convince myself that I was losing all my loved ones, when, in reality, I was shutting myself away from the world and they were losing me.

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I have allowed myself to believe that I don’t deserve to walk among “normal” people, since I don’t feel normal. I’ve had a hard time shaking off the awkwardness of having to wear a nasal cannula and lug around portable oxygen tanks. I get self-conscious every time someone takes a second look at me.

I also refuse help, even when I know I might need it — especially on the long walk from the parking lot to my doctor’s office. The medical staff are always so nice and try to convince me to use a wheelchair, but I don’t want to seem weak.

Through all of these feelings of inadequacy, I have allowed myself to miss out on the fun of living my life. I’ve been hiding for far too long, and it’s time to take action. I recall the words my mother told me, which I have been using since I began writing my column: “Never hide your illness.”

Because I want to live my best life, I’ve decided to create some goals for myself. I’m a person who must create a plan, otherwise, I get lazy about reaching my goals.

For starters, I want to find a much happier and more balanced version of myself. To do this, I will need to make amends with my family and longtime friends. Second, I’d like to meet other newly diagnosed patients who also struggle with accepting their illness. And third, I want to put my desire to become a better PF advocate into action.

I realize these won’t be easy tasks, especially since working on my self-confidence and self-awareness has been a battle for me. But I am determined to find a happy balance for myself. I can’t help others if I’m not on the right path.

One thing I’ve decided to work on is not thinking about my past or worrying about my future. With a rare, chronic illness, I must learn to live for today, in the moment.

I’m learning to accept that I am human, so there will be times when I struggle with my confidence. This is when I will need to be courageous, silence the critical side of me, and express gratitude toward myself.

Only after I’ve achieved these goals will I be ready to step out of hiding, advocate for my community, and help others find the best version of themselves. I know this will be hard, but I’m up for the challenge.

living with pulmonary fibrosis | Pulmonary Fibrosis News | A long, rectangular window over a bathtub in Ann's home looks out at a tree and the sky.

Another God’s Window. I love how tranquil this looks. (Photo by Ann Reynoso)


Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

Adelaide campbell avatar

Adelaide campbell

You’ve sort of just described me. Gods window for me happens when I have the hood down on my little Fiat and classical music up loud, driving fast, while my gaze roams across farm fields.
But it’s so fleeting.
Today, for example, I’m still in bed, fb messaging, it’s nearly noon, the heat and humidity outside is too much for me …….. so frustrating, I’m a sun lover, and my huge garden calls me.
And I’ve decided I’m just waiting for god. Who I don’t actually believe in. But why bother doing anything else? The end is inevitable. I’m 78, I can’t plan any more foreign solo home stay trips before I’m too old to do it, my children get in touch as and when duty calls, my husband is a very boring and lazy man.
My only social contact now are the seven people with whom I share my daily wordle score.
This happened only a few months ago!
How can my life have changed so much?
What amusing, interesting, stimulating life can I create on an iPad?
It’s not fair.

Reply
Ernestine

Ernestine "Ernie" Shineman

I am a 75 year old female, diagnosed with IPF in November 2019, and thankfully I have had little worsening. The strong real estate market was the determining factor in selling our home in Annapolis, Maryland, and relocating to South Carolina. We have no connections here other than our eldest son, a good thing!
At the time of our move, January of this year, I was on oxygen during the day and had a horrible and painful cough. Prior to our move I had done some homework on the quality of the air in SC versus the quality of the air in Maryland.
Without a doubt the air quality is far worse in Maryland. About 4 months ago I realized that my coughing had almost completely subsided, and my new pulmonologist said I no loner needed oxygen at this time. I have kept the small Inogen machine I purchased, but the larger paraphernalia provided by Medicare is been packaged and returned to them now.
At some point during packing and/or the move I injured my back and spent 3-4 months in major pain. The orthopedist only hooked me up with a brace. I am recently diagnosed with orthostatic hypotension, so I have a problem standing still, fainting. My cardio myopathy, diagnosed 25 +/- years ago remains completely under control. All this came to a head in May when I spent 21 days in the hospital. This started as an ambulance ride to the ER, back surgery, and adjusting medications. They wouldn't even let me go to the bathroom alone. (I had no idea they can put alarms on the bed should the patient try to go the the bathroom solo!) The result of all this is that I have not been cleared yet to get back into pulmonary rehab. I hope to be by October 1st. And I'm still in the "no lifting, no twisting, no leaning", so getting settled in has been impossible. I've long since graduated from a walker to a cane, and am weaning myself off the cane except for balance as needed. I INTEND TO BE BACK TO "MY NORMAL" AS OF A YEAR AGO BY CHRISTMAS! I mention ALL THIS for background only, and to make the point that the South Carolina air suits me well. I have read nothing about air quality being a factor for folks with any lung disease. FOR ME IT HAS MADE ALL THE DIFFERENCE. And I INTEND TO BE BACK TO "MY NORMAL" AS OF A YEAR AGO BY CHRISTMAS!

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Christie Patient avatar

Christie Patient

Love this Ann, you can do hard things! Xo

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