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What I Need to Remind Myself When I Walk Uphill With Samter's Triad

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As I trudged up a hill with my husband a few weeks ago, I commented to him that people observing me would just think I was unfit and lazy with the number of stops I was needing to take (I’m never particularly nice to myself). That’s the thing, with hidden illness or disease, only the person occupying said body (and perhaps her doctor) really knows what’s going on inside.

My “insides” are not particularly happy and in a way that’s hard for me to define. I have Samter’s Triad, also knows as aspirin-exacerbated respiratory disease (AERD). Without any of the side effects of treatment, my illness consists of asthma (extremely severe when I was a child), recurrent sinus disease with nasal polyps (I have had 12 operations) and an aspirin allergy, which means I’m also unable to take non-steroidal anti-inflammatory drugs.

The side effects add another layer (layers): long-term use of corticosteroids has left me with adrenal suppression, and a failed aspirin-desensitization trial nearly 10 years ago damaged my poor old lungs and has left me with constant infection in them. I have also developed inflammatory issues in my stomach and joints, just to complicate matters further.

So that’s me, on the way up the hill, lungs crying out in pain. It’s good for them, though, that I do keep pushing them. Every few years or so, when I go through a particularly bad spell health-wise, I pull the edges of my life in closer and tell myself I’m OK, I just won’t walk up hills… or indulge in high-impact exercise of any kind. And then I find myself in another hiatus, and I challenge myself to the odd hill or two again and realize (although I puff and pause a lot), I still have it in me to walk up a small hill.

The way down the hill, though, that’s an entirely different story: my poor old-lady joints (especially my knees) hate walking down hills and stairs. I do it though because it’s a use-it-or-lose-it scenario. Because of that aspirin allergy, I cannot take any of the non-steroidal anti-inflammatories that might make my arthritis a little easier to cope with, so I end up pushing up my daily dose of steroids to relieve the impact of adrenal insufficiency on my joints and muscles. All a vicious circle, really.

All the time, as I puff up hills or sit in my car trying to reduce my anxiety levels, I breathe. My battered lungs continue to inflate and deflate over and over, all day, every day. There is a lot to be said about their resiliency, about my resiliency… I don’t often say it though. More often I’m beating myself up for having to stop as I walk up a hill, or for not being able to dance the way I used to dance, or for struggling with weight loss while taking steroids. What I don’t do enough, not nearly enough, is express gratitude in every day for the incredible strength my body continues to display 51+ years into this life that we’ve been living together. Anxiety, depression, grief and chronic illness all held together by a heart that continues to beat, that continues to love every day. I am incredibly grateful for that, and I need to acknowledge it more.

Life is not a race to the end; it’s an opportunity every day, every second, to appreciate where I am and acknowledge how much of an overcomer I am. Life, even my life, is a gift. That’s my lesson today… hopefully I remember it again tomorrow.

Getty image by Fotozick

Originally published: March 23, 2018
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