Category Archives: spondyloarthritis

What Debilitating Fatigue Feels Like While It’s Happening

I live with Ankylosing Spondylitis (AS), or Axial Spondyloarthritis (AxSpA) – the two names represent the same disease. AS is a systemic disease, which means it can impact multiple joints as well as organs. Fatigue isn’t an organ or a joint, but it is a big part of living with AS; a part that doesn’t get a lot of attention.

AS is characterized by inflammation throughout the body, which causes pain. Our bodies are busy fighting this inflammation and pain all the time; when we’re at rest as well as when we’re active, which is exhausting to say the least. Fatigue is a result of our bodies working overtime to fight constant inflammation; our body’s response to its own attempts to save us from ourselves.

Note: that paragraph above is my hypothesis as someone with the disease – it’s not something I have researched or proven.

I managed to write the following during one of the worst fatigue flares of my life. I focused all my attention on channeling the fuzzy thoughts in my head through my fingers to the keyboard on my phone instead of allowing myself the rest my body was begging for. I felt it was important to get the experience down in the moment so I could look back later and understand what I was really feeling. I wanted to document the truth so I would believe what I truly go through, because it’s so easy to question and dissociate from such things after the fact.

Continue reading What Debilitating Fatigue Feels Like While It’s Happening

The Social Progression of Ankylosing Spondylitis

When I was diagnosed with Ankylosing Spondylitis (AS), my world was upended.

I lived in a state of shock for the first month or so, clinging to hope that the diagnosis wasn’t really what I had.

I talked myself out of it. Or at least I tried: 

“I can’t have this incurable disease, can I? Maybe I imagined my symptoms, my pain, my fatigue – all those years of unanswered medical woes.”

I thought these things while also dreading the reality that I knew was true. This disease was with me for life. Period.

And then I learned I wasn’t alone. Everything I was experiencing – emotional, social, physical, medical – was being experienced by millions of strangers I would never meet.

I only realized, years later, the social progression of Ankylosing Spondylitis is something we all experience in our own way. We with the disease have conversations with ourselves, with our friends and family, with our disease community, our doctors, our medications, our side effects. 

The social progression with this disease is real and normal and natural, yet lonely all the same. It happens in different ways for all of us, and it continues for the rest of our lives as we adapt and change and grow and … well, survive our own bodies doing their best to survive.


Continue reading The Social Progression of Ankylosing Spondylitis

To My Chronic Cat, Who’s Incurable. Just Like Me

Juno.

Last night I slid into bed next to you.

I formed my own blankets around the perimeter of your body so my covers wouldn’t be too heavy on top of you.

I slid a sheet over you and up to your neck and placed a stuffed sloth on your other side, so you’d feel safe, warm, and cocooned in love.

You were in the middle of the bed, stretched out from the tips of your furry Maine Coon paws to the fluffiest end of your tail, with your confused, exhausted face trying to find an acceptable semblance of peace and comfort within the echoey plastic orb of the protective cone around your neck.

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Juno the #SpondyCat. ©2018, property of BeingCharis

Your dissent collar, if we wanted to be funny. Continue reading To My Chronic Cat, Who’s Incurable. Just Like Me

How a Pair of Heels Gave Me a Reason to Live with Ankylosing Spondylitis

Shortly after I was diagnosed with Ankylosing Spondylitis (AS) I decided to buy a pair of heels. I could count on one finger the number of times I’d successfully worn heels in the past: to that dance in college after a knee surgery, using my crutches to help me balance.

I grew up in rural North Carolina and heels did not help me climb trees, catch blue crabs, or sail a boat. I didn’t have a use for them. I didn’t know how to wear something that wasn’t running shoes or soccer cleats. I would only try on heels to make my friends laugh while I stumbled around like Jar Jar Binks.

It seems counter-intuitive that I would purchase a pair of heels right after being diagnosed with a disease that causes extreme joint pain, inflammation, and spinal damage. I should be preserving my body and my joints as much as possible, right?

But when I was diagnosed with AS something clicked inside me, and it wasn’t a desire to follow the Yellow Brick Road back home to Kansas. It was a sudden desire to experience everything life could offer before I couldn’t do it anymore. And that somehow meant learning how to walk in heels even if I was only able to use them for a year, 5 years, or 10 years. Even though it didn’t make any sense.

So I bought heels and kind of learned to walk in them.

And then I became a fashion model. I swear it wasn’t planned. During my first photo shoot the photographer had to teach me how to pose gracefully without falling over. Continue reading How a Pair of Heels Gave Me a Reason to Live with Ankylosing Spondylitis