Category Archives: Arthritis

#sickbody, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, Grief, health, Invisible disease, sickness, spondyloarthritis

One of the ‘Some Days’

3 Comments

Flashback: March 26, 2015

Today is one of the ‘some days’.

Some days, I wake up in a paralyzed body. Paralyzed by pain, fatigue, anger, confusion, loss.

Some days I wake with two metal rods in place of the muscles around my spine. Someone inserted them during the night and turned on the heat. I am on fire.

Some days I wake in a fog, seeing myself as an island of disease and disability. I am a spider under a lens with its body in focus while the extremities are blurred. My whole being is my lower back, with things like arms and legs tacked on as extras. I feel pain but I can’t move to make it stop. As my senses come alive I become aware of the pain radiating along my whole torso with intensity that only increases.

Some days I wake in fear. I want to move, but movement means pain, yet remaining still means pain. I am afraid of my body yet I am trapped inside it.

Some days my arms flail or just lift and fall when I try to move them – I am paralyzed.

Some days I wake with stiff muscles that spasm if touched. If I bend my knees to my chest to stretch, my body rejects the motion because of those metal rods of muscle some evil force stuck in me and my whole back spasms.

Some days I wake with anger that I am no longer the person I never imagined I could lose. I am grieving the loss of Charis. I am the remnants of Charis and I am trying to make something of what’s left.

I will never give up hope that people living with severe chronic diseases can live more normal lives without fear.

Maybe, one day, I will wake up without fear.

#sickbody, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, health, Invisible disease, sickness, spondyloarthritis

My Body’s Symphony

Leave a comment

When you see me you see a picture of health. A young body. Eyes that shine through the pain. Even my doctor says, “So you’re healthy aside from your diagnosis of Ankylosing Spondylitis, so that’s good.” What an ironic statement.

I see a body in the mirror that looks like mine, but this is not my body anymore.  This body now belongs to someone else, it is a stranger’s body.2015-03-28 14.33.58

Look past my face.  Look past my beautiful face to the pain.  Slight outward signs, my physical insecurities, only wait for the trained eye to discover: discolored splotches of skin, a slight hunch, constant readjusting when seated or standing for long periods of time – indirect signs of a disease that causes far more insecurities than the clinical diagnosis on paper can possibly reflect.

Look at ME! Past the click bait, that fancy model pose that got you here. Here, a glimpse inside my twisted fate, my gnarly spine. I’ve got plenty of backbone, thank you, that leaves me in an ironically fragile state. Bone spurs take root and strike a nerve softly like the soft staccato of pianissimo on the baby grande, until my legs give way – the build up of a chord deep within (thudding along, a low F on the bass clef) until an avalanche of sound screams from within my joints. This is my symphony – all my cells screaming (begging), “Finale!” while the inflamed audience – the peanut gallery – screams, “Encore!” It must be raining today the way Beethoven has woven his angry Symphony number 5 in C minor through my body.  Or maybe Dvořák’s Symphony number 9 in E minor. Beautiful pain. Continue reading My Body’s Symphony →

#sickbody, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, disability, Invisible disease, spondyloarthritis, Uncategorized

Learning How to Fly Again

5 Comments

When I was diagnosed with ankylosing spondylitis my life flipped upside down. It was as if I was born into a new body; one that I never imagined could exist. I was a baby and everything was new again. But not exciting. It was new and scary. And my life is still upside down.

I still remember the feeling of intentionally exhausting myself playing soccer or running or dancing all night, then waking up happily sore the following morning. This is not what my body feels now. Now, no matter what I do the day before – whether I just went to work, cooked, gardened, or even just stayed at home “resting” – my body reacts as if someone is constantly sticking pins into my voodoo doll and twisting them deeper and deeper into my bones and joints.  My muscles are just trying to keep up. Continue reading Learning How to Fly Again →

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

Holding Hands With the Reaper

Leave a comment

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 →