Tag Archives: incurable

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

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I Will Never Graduate from Treatment

​Many months ago during a routine drug treatment I heard a happy commotion and looked up to see balloons entering a private room across the infusion center. Noticing my curiosity, the nurse checking my vitals offered, “Last day of chemo.”

My lips curled upward into a celebratory smile, but it was interrupted as a different feeling suddenly took my breath away.

“Oh,” I breathed in sharply, “I’ll never get balloons.”

I was crushed.

The nurse asked, “What are you receiving infusions for?”

“Ankylosing Spondylitis,” I ventured, waiting to see if I would need to explain the disease to her.

“Oh, yes,” she replied, “I have Rheumatoid Arthritis. Perhaps we can bring you balloons for your next infusion?”

Someone walking by offered me a cupcake. I shook my head, no. Continue reading I Will Never Graduate from Treatment

Your Friend Just Got Diagnosed with Ankylosing Spondylitis. What the Heck?

 

First of all, what is Ankylosing Spondylitis (AS)?

Wait, how do you even pronounce it?

Ankylosing Spondylitis (An-kee-low-sing Spon-dih-ly-tuss) is a disease that causes inflammation throughout the body, especially in the spine and low back, and can cause bone spurs to fuse joints together, typically in the spine. As you can imagine, extra bone growing in your body that’s not supposed to be there can be quite painful. Additionally, since AS is systemic it can also damage organs including the eyes, liver, lungs, and more.

AS is generally treated by a specialist doctor called a rheumatologist. The clinical treatment recommended to slow down the progression of AS, as stated in the 2015 AS treatment guidelines published by the American College of Rheumatology, is a biologic drug if non-steroidal anti-inflammatory drugs fail (my understanding is that a combination of therapies is common, both pharmacological and complementary). A biologic is a specialty drug made from living cells (biologically, rather than chemically) that, in short, suppresses the immune system. In ankylosing spondylitis, the body constantly attacks itself, seemingly without a real danger present, which causes inflammation and damage. The biologic drugs slow that reaction but in doing so also decrease the body’s ability to fight infection. You can read more about how autoimmune vs auto-inflammatory diseases work here (hint: AS isn’t proven to be autoimmune).

So now that you know a teeny bit more about AS imagine you are the one who was just diagnosed with it.

Scary, huh?


Congratulations are in order simply because you are reading this blog post. It’s difficult to believe, but I often hear from people whose family and friends shun them for “faking being sick.” These same family and friends often don’t make an effort to learn what their loved one is actually experiencing. So thank goodness you believe your friend and want to learn more.

Continue reading Your Friend Just Got Diagnosed with Ankylosing Spondylitis. What the Heck?

Dear Prescription Opioid Debaters:

Dear debaters,

I am a 30 year old who inherited a lifelong inflammatory disease called ankylosing spondylitis (AS). AS can cause the spine to fuse together from bone spurs and can affect organs and other joints. AS causes significant pain, to put it lightly.

I am also a former college athlete and marathoner. I know what it means to push through pain as an athlete. But I cannot push through the pain caused by my disease. Pushing through it causes the disease to progress and the pain to increase.

My main treatment is a drug made from living cells (the same class of drugs that treats many cancers); it helps slow the progression of my disease. Because this treatment is [finally!] working, it also reduces some of the worst symptoms. But AS is a severe disease with no cure, so even with this specialty drug I still have plenty of pain.

And, like millions of chronic pain patients who fight simply to survive daily, I’ve tried everything to control the pain. Continue reading Dear Prescription Opioid Debaters: