The things no one tells you when you are diagnosed with a painful chronic illness…

Chronic illness leaves you feeling like you’re letting everyone down—especially yourself. It’s a constant game of adjusting expectations, rethinking assumptions, and regulating hopes. That deadline you’re trying to meet, that show you really wanted to go to, the pile of dishes in your sink, your friends who you want to see… all of these priorities…

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I Hate the Spoon Theory

There. I said it. I hate the spoon theory. What is this “spoon theory”, you ask? It’s a metaphor developed by a woman named Christine Miserandino, who has Lupus. This was her attempt to describe what it means to be chronically ill. In the chronic illness community, it’s become shorthand for describing our conditions, our energy…

I’m a Thursday Girl, or … It’s Enbrel Day!

Thursday, August 24, 7:30am I’m awake. I’m in pain. It takes a few minutes for my brain to get going, but when it does, I realize, today is the day. After two months of preparation, this afternoon I will have my first shot of Enbrel. The last time I updated this blog, it was in the…

Going on Biologics takes a lot of Prep!

In the middle of my month of Walking My A.S. Off, I started to wonder if I was making a mistake not beginning the biologics. As I looked back on the tracking of my flare ups, I realized that I had been having more bad days than good days. The reality began to set in…

Reflections on a month of walking my A.S. off…

31 days. 201,738 steps.  In a nutshell, that was the story of my first time Walking My A.S. Off along with fellow spondylitis sufferers and their friends, advocates, allies, families, et cetera, from around the world. I had no idea when I started walking that it would be such an emotional rollercoaster. From good days taking…

Walkin’ my A.S. Off for the Month of May

It's May, and you know what that means? It's time to join other spondys and spondy-supporters as all over the world we lace up our best walking shoes and head out on the town to spread awareness of ankylosing spondylitis. It's wild to think that one year ago, when the people, who now feel like…