Tag Archives: Arthritis

ankylosing spondylitis, modeling

Raising Awareness on the Runway | I Took Ankylosing Spondylitis to New York Fashion Week

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I modeled in New York Fashion Week recently.

Some might say it was a dream come true, but for me it was someone else’s dream I fell into. Alice didn’t expect to fall down a hole into Wonderland, and I didn’t expect to be diagnosed with a lifelong progressive disease when I was 26.

Around the time I was diagnosed with Ankylosing Spondylitis in 2013 I began modeling. Neither the diagnosis nor the modeling were expected. One happened by an invite I almost grudgingly accepted from a friend. The other happened via email from my estranged father. You can figure out which was which – at least I hope you can.

When I began modeling I had just begun hating my body. It had betrayed me by getting sick after decades of playing soccer, running marathons, and being a professional mover; none of which I could continue regularly after I was diagnosed. Being an athlete had been my whole identity. Suddenly I wasn’t anymore, and not by choice.

Being in front of the camera helped rebuild self-esteem and I began to love my body again, which surprised me. But, even more than enjoying being photographed, I uncovered a treasure trove of humanity behind the scenes. When I began sharing my story with Ankylosing Spondylitis (AS), I found many models, hair and makeup artists, designers, and photographers with their own stories of chronic disease.

We are by and large fed stories of health, ability, and perfection by the polished images we see of models on the runway or in magazines. We tend to believe models are perfect, healthy, able beings with happy lives. And in an industry known for celebrating a very narrow, specific type of beauty and body, nonconformity is ill-advised if you’re in the thick of it.

I learned quickly how easy it is to feign – yet also truly find – confidence and identity when performing for the cameras.

Image by Glenn Jones/Ikona Photography ©2014. My first in-studio photo shoot ever. I had no idea what I was getting myself into.

But anyone who knows me knows I’m not known for my conformity, so it wasn’t long before I was being myself. Continue reading Raising Awareness on the Runway | I Took Ankylosing Spondylitis to New York Fashion Week →

#sickbody, Arthritis, chronic disease, chronic pain, health, Invisible disease, Patient Advocacy, sickness

We All Need Gathering Places

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Arthritis Introspective 9th Annual Gathering: #GrowTogether16

Nashville, Tennessee

May, 2016

Dear Journal,

I’m spending the weekend with a lot of really special people. We’ll drink alcohol, many of us. And take lots of drugs combined. Lots and lots of drugs.

Drugs we wish we didn’t have to take. Did you think this was Burning Man?

No. We’re all sick. We all have some form of arthritis, and many of us brought loved ones with us. We came to have fun – not despite – because we have arthritis.

We didn’t come here to complain. We came to share experiences and be reminded that we aren’t alone. We are a family. We know exactly what it means to survive, and we are determined to be whole humans in the process.

Many of us suffer from multiple chronic conditions because of and/or in addition to our arthritis: depression, anxiety, heart disease, diabetes, chronic respiratory conditions, high blood pressure, etc.

And the drugs. Oh the drugs. Did I mention the drugs? Biologics. Corticosteroids. Chemotherapy. Non Steroidal Anti-Inflammatories. Analgesics (oral and topical), Disease Modifying Antirheumatic Drugs, eye steroids (did you know there are steroids for eyes?). Sleep medication. Anxiety medication. Depression medication. Blood pressure medication. Insulin. Medical Marijuana. Etc. Etc. Etc. Continue reading We All Need Gathering Places →

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, Heroes, Invisible disease, Patient Advocacy, public speaking, sickness, spondyloarthritis, Survivor

My Walk to Cure Arthritis

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I still remember my first time. I showed up curious, yet expecting to be bored. After doing cancer walks and fundraisers for everyone else, this was just another event for people with some horrible condition. I didn’t really take it seriously – after all, arthritis was for old people, not me.  This walk felt like something else to fill up space on my calendar. I could be doing…something else.

It was May 18th, 2013, and I was standing in front of the California State Capitol building at 8:30am. A month earlier I had been diagnosed with Ankylosing Spondylitis. It was “California-HOT.” People were gathered around without much energy – people I didn’t know, until a few friends showed up and held me upright while I wondered for the last time what I was actually doing there. I still didn’t want to accept I actually had arthritis.

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With Suzy, 2013 Arthritis Walk

I had raised over $2,000 for this walk. Raising the money was a way to share my story after the shock of hearing the words, “You have ankylosing spondylitis.”

It wasn’t about the money. It was about screaming at the top of my lungs to be heard after my world fell apart. It was about what I could control. While I couldn’t control this new diagnosis, I could make sure everyone in my life knew about it.

It wasn’t about the money. It was about people seeing my world fall apart, and I wanted my friends to glue me back together and erase the scars. Continue reading My Walk to Cure Arthritis →

#sickbody, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, health, Invisible disease, poetry, spondyloarthritis, Survivor

Holding Hands With the Reaper

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People tell me I should smile more.

But look inside me.

My toes. My toes point soundly forward in shoes that should have my prescription orthotics in them.  I choose not to because I’m 28 and I’m wearing heels as long as I can, so I can feel the “normal” parts of my 20s – and choose pain that I cause myself, thank you very much. I want reminders in 5 years that I could pass as someone my age.  Right now my toes are sound.  I trust my toes, most of the time.

My plantar fascias are aching. They threaten to cramp most nights as I lie in bed, still awake after hours of restlessness.  They ache and throb as if my heart itself has moved to the bottom of my feet. I ask a lot of my feet. These feet hold me in place as I struggle against the rest of me to cook, bathe, check the mail, pedal my bike, press the sewing machine pedal, and occasionally walk in high fashion runway shows.

Though I’m largely unaware of the pain until I pop my ankles, they remain stiff all the time. I rotate my feet clockwise and counterclockwise, back and forth in quick rhythm, in attempt to loosen my ankles and rice krispies happen.  You know, snap, crackle, and pop. Rice Krispies don’t hurt, but my joints do. How can these sounds accompany so much hidden pain that suddenly takes the red carpet?

My knees are chronically, invisibly enlarged from years of soccer and running long before I knew why my injuries were so intense, why they didn’t heal like they should. My quads and hamstrings play injury-tennis, back and forth. The pain is in your court now, left hammie. My weakened muscles are constantly overcompensating for what my body can’t naturally do: fight inflammation, toxins created by overuse, expectant injury, and scarred tissues and bone spurs.  Instead, my body fights my joints as if they are alien matter. Continue reading Holding Hands With the Reaper →