Category Archives: ankylosing spondylitis

Worth All the Regrets | My Third and Sickest Burn

 

Burning Man saved my life when I desperately needed a reason to keep living with chronic disease and disability. I owe it for reminding me what it means to be a whole human.

I return each year to the event in Black Rock City, a city that rises from the dust and becomes Home to around 80,000 temporary neighbors for 8+ days each summer.

Yet I risk a lot by simply showing up because of my Ankylosing Spondylitis (AS).

My medications severely dehydrate me, I’m at greater risk of sunburn and heat stroke, and symptoms can flare without warning especially if I push too hard. I don’t know what it’s like to not have pain; inflamed lungs make breathing difficult even without inhaling fistfuls of dust; debilitating fatigue can suddenly overwhelm me; and my body is weaker every year, making it difficult to explore without a chaperone lest I become unable to make it back to camp.

In a city where survival is part of living, my decision to be there is radically dangerous and bold.

The reality that every burn could be my last as my body deteriorates is an unsettling feeling. I don’t want to stop going to Burning Man, but I also fear the inflated odds that I could have a health emergency in the middle of a desert with no access to cell reception or internet.

And during my third burn, those odds almost won. Three times. Continue reading Worth All the Regrets | My Third and Sickest Burn

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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

Ankylosing Spondylitis Eradicated? A Post-Apocalyptic Fantasy Called GreenEva

February 17th, 2073.

Everything was eerily calm. Aside from a few fiery crashed planes and the last of the human-powered trains derailing, the world was quiet. Too quiet, except for hungry dogs with full bladders barking inside suddenly empty houses.

Traffic lights changed from yellow to red, red to green, then yellow to red again. Clock towers struck 9:00 AM and the Times Square marquee scrolled unchanging stock market shares. Swing sets swung and flags unfurled in the breeze.

This wasn’t the post-apocalypse sci-fi anyone had read as a teenager.

People had simply vanished. Poof.

The dark green fog, Green Evanescence, had taken every human with it.

Almost every human. Continue reading Ankylosing Spondylitis Eradicated? A Post-Apocalyptic Fantasy Called GreenEva

I Talked with Zach, the Try Guy with Ankylosing Spondylitis (Part II)

Since Zach’s vlog announcement of his Ankylosing Spondylitis (AS) diagnosis in September 2017, the video has been viewed over 4.9 million times (as of time of this publication).

In part one of this series I talked about Zach’s story’s impact, the validation that came with his diagnosis, and lessons learned living with a disease that is always beneath the surface.

In part two I dive deeper into Zach’s decision to announce his diagnosis on YouTube, his approach to coping with AS, and whether he calls himself an advocate. Finally, I’ll share his exclusive message to the AS community.

Before I continue, I want to clarify that I am neither doctor nor medical professional. None of the following should be taken as diagnostic, medical or treatment advice. Please consult with your physician before starting, stopping, or changing treatment.

Let’s get started.

Why the video? Continue reading I Talked with Zach, the Try Guy with Ankylosing Spondylitis (Part II)

I talked with Zach, the Try Guy with Ankylosing Spondylitis (part I)

When Try Guys member Zach Kornfeld announced he has Ankylosing Spondylitis (AS) in September 2017 I was so relieved.

I know what you’re thinking. Relief sounds super self-centered, so let me say right now that I was also really sad for Zach’s diagnosis; I wouldn’t wish Ankylosing Spondylitis on my worst enemy. But when you live with a common-but-unknown disease, awareness is what you live for.

Well, it’s what I live for anyway. And when a celebrity makes an announcement a lot of people pay attention.

Zach’s video marked the second “Ankylosing Spondylitis coming out” by a celebrity figure in two years (Dan Reynolds announced his in 2015) and it made a big splash in the AS community. Spondylitis Twitter was buzzing. Spondylitis Facebook and Instagram were buzzing, etc etc. It was exciting to see someone talking frankly about AS to a really large audience (as of April 27, 2018 the video had nearly 4.9 million views). Zach was telling all our stories by telling his own and we clung to this moment as a chance to be seen and heard.

Here, let me lay this out for you better.

Ankylosing Spondylitis is an immune-mediated inflammatory disease that can progressively damage joints in the body, especially in the spine, and in some cases cause the spine to fuse into a column of rigid bone. Additionally, AS is a systemic, or whole-body, disease; so it can cause fatigue, cognitive impairment, sleep impairment, and damage multiple organs in the body. There is no cure, so the goal for treatment is to reduce inflammation to slow the progression of the disease and manage symptoms.

Many of us who have AS had never even heard of the disease before a doctor sat us down and opened their mouth to a flood of slow motion gibberish, “You have A n k y l o s a u r a s d i n o s a u r S p o o n d a c t y l a u r u s B l i b b i d y B l o p p i d y B o o.”

Then, as if our disease isn’t hard enough to pronounce, our own friends and family struggle to even understand what we’re experiencing and that it’s serious. And a lot of general practitioners have already forgotten the one paragraph about AS they read during medical school. There are even rheumatologists (the specialists who treat AS) who refuse to diagnose women. More about that another time.

And yet AS affects so many people. Ankylosing Spondylitis falls under an umbrella of diseases called Spondyloarthritis, which affects an estimated 2.7 million people in the USA alone. That’s more than Amyotrophic Lateral Sclerosis (ALS)/Lou Gherig’s Disease, Multiple Sclerosis, and Rheumatoid Arthritis combined. Estimates vary regarding the number of people specifically with AS in the US, but it is the most prevalent type of Spondyloarthritis. That’s a LOT of people.

I wish nobody had AS, but since a lot of us do and we largely suffer in silence, Zach’s video was cause for celebration – not for his being diagnosed, but for his willingness to talk about it in front of millions of people.

When I saw his video I knew I wanted to help his story reach more people. I knew I wanted to talk to him.

So six months later I reached out to him about a chronic disease documentary I’m in (shameless plug) and it turned into a Skype interview.

Continue reading I talked with Zach, the Try Guy with Ankylosing Spondylitis (part I)

16 Things I Take to My Infusions for Ankylosing Spondylitis

FYI: if you purchase something through a link in this post I may receive a small commission, but it will not change the amount you pay for the item.


When I began receiving infusion treatments for Ankylosing Spondylitis I had no idea how to prepare for my appointments. What do I bring? What do I wear? Do I need a ride?

Now, well over a year of regular infusions later, I often tell people that infusions are my favorite appointments because I actually feel like a patient. All I have to do is show up and be treated; I don’t have to steel myself for a consultation, review medical records ahead of time or expect to receive a new diagnosis or a change in medication. I just show up, get poked with a needle and catch up on emails or Facebook until I fall asleep. Minus the awkward IV pole, it’s the perfect SpA treatment (all you Spondyloarthritis folks got that joke, right?).

Here is my list for infusion days:

Continue reading 16 Things I Take to My Infusions for Ankylosing Spondylitis

Giving Back is About More Than Money

I recently wrote a narrative about my relationship with the Spondylitis Association of America for #MyGivingStory, a campaign that focuses on people’s relationships with giving to nonprofits. The story I submitted was not a finalist, but I believe it deserves a life beyond that campaign.


I still remember calling the Spondylitis Association of America (SAA), declaring, “I’m going to be a poster child for Ankylosing Spondylitis (AS).” I had just been diagnosed with AS – a severe, painful inflammatory disease that mainly affects the spine/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. Over 2.7 million people have Spondyloarthritis (the type of disease AS is) in the United States – that’s more than twice the number of people who have Rheumatoid Arthritis. It’s also more than the number of people who have Lou Gherig’s disease (ALS) and Multiple Sclerosis (MS) combined. AS isn’t rare, but it often feels that way.

I was angry. So I became determined to use my physical strength and my pretty face to raise awareness of an ugly disease – I declared I was going to backpack across the country, give speeches, raise money, find a cure, and make Ankylosing Spondylitis a household name. Continue reading Giving Back is About More Than Money