featured, Living Breathless, Uncategorized
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What does remission look like?

Almost as quietly as Sjӧgren’s Syndrome caused my immune system to creep up, nearly turning my life upside down, I slipped into remission. More importantly – I’ve stayed there for one year. I didn’t even realize when, exactly, I went into remission until last month when Dr. B said, “It’s been a year!” (Cue balloon drop.)

So what does that mean? It means that if my immune system stays beat down for another 12 months, I get to start a painstakingly slow drug taper. Maybe, in another five years or so, if all goes well, I can be medicine free! In the meantime, it means I live.

The last couple of years have felt like war. I was diagnosed in 2014, and I was at rock bottom. In 2015, I was out to prove that my life wasn’t over and I pushed and scraped and fought for every breath for every step I took. Last year, I settled in a bit. When my body stopped trying to kill me, I stopped trying to kill it. We learned to work together again. It wasn’t an easy lesson. I’m stubborn, after all. But after a particularly humid hike, in which I ran out of oxygen, literally brought me to my knees, I realized the only way forward was to accept the things I cannot change.

So, you’ll notice that there aren’t as many posts about hiking anymore. That’s not just because I took a sabbatical over the fall and winter. It is because when it’s hot and humid or too cold, I don’t go – or I just go a short distance. I adopted other, lower impact, outdoor activities. No joke, I garden. It started off with just some flowers on my back patio last year. No matter how hot or humid it was, I could always take care of my little container garden and enjoy bursts of color all around me.  This year, I might have gotten carried away.

Keep in mind, I rent. It’s a relatively private townhouse, but I can’t exactly go tear up the grass or anything. Meticulously arranged between my shared front porch and private back patio, I’m growing strawberries, tomatoes, cherry tomatoes, corn (heck, yes! I found corn you can grow in a pot!), and six or seven different varieties of flowers.

What? I don’t believe in doing anything in half measures. It’s going to be beautiful – and tasty.

More importantly, my life is kicking back into gear again. I’ve held myself in limbo for the last couple of years, putting career and educational aspirations on hold while I figured out what I am still capable of. I’m moving past letting an autoimmune disorder (and subsequent lung disease) define everything I do. This is what remission looks like.

This entry was posted in: featured, Living Breathless, Uncategorized

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I’m something you don’t see every day: A person under 80 who walks around with oxygen everywhere she goes. I have Sjogren's Syndrome, an autoimmune disorder which, with the help of my stubborn refusal to go to the doctor, caused some pretty deep damage to my lungs. My lack of breath slowed me down for a while, but I'm back to adventuring - just with Gus, my little oxygen tank, in tow. This year's goal is to complete the 52 Hike Challenge and get myself into a healthier state of being. Join me on my quest to become oxygen free!

3 Comments

    • Thanks, Curt! I read your post about “the dark side” the other day and I LOVED it. Your pictures are amazing.

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