Category Archives: health

#sickbody, Advocacy, ankylosing spondylitis, chronic disease, chronic pain, disability, Equality, health, Healthcare, Inequality, Invisible disease, Patient Advocacy, Politics, SSDI

Accessing Welfare Is Easy

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Just fill out the forms, submit them, and wait for the phone to ring, right?

Some of you probably know late last year I began the journey to join the throngs of people who subsist off Social Security Disability (SSDI) or Supplemental Security Income (SSI). Truly, I tell you, it was such an easy thing to recognize and claim I could no longer work.

Not.

I got so excited when I thought about the idea of living on an average of SSDI $1,022.29 per month, or SSI $561.60 per month. Actually, less than that, since “The amount you receive each month will be based on your average lifetime earnings before your disability began. It is not based on how severe your disability is or how much income you have.”

Not. Could you do it?

Why have I spent the last two years using every ounce of energy I have to try to earn a living?  Because the last thing I wanted to do was admit that I was too sick to function like the normal, healthy human being I knew I would always be. Because I was raised to work hard, and remember, there are people out there who have it worse than I do. But I learned those things when the biggest challenge in my life was convincing my soccer coach to let me play the whole match without subbing out. I was the super-involved kid in high school: on the soccer team, track team, in band and drama, and a straight-A student who graduated 10th or 11th in my class. I could do anything and everything and that’s the way the world worked for everyone else too, if they would just approach life with all the vigor and energy I had rattling in my pockets.

That was then. It’s different now. A diagnosis of ankylosing spondylitis flipped me over and shook the spare change out of my pockets. Where I used to sleep through North Carolina hurricanes that hurled tree branches and rain pellets onto the roof of my house, I now rarely find REM sleep even in the most relaxed spaces. Fatigue affects my mental and physical functions, sometimes causing me to lose the word I was about to say in the middle of a sentence. My depth perception is off, causing me to hit my head on clothes racks and slam into door frames with my hip.  I now focus on the basic needs to function and survive, which involves a much different skill-set than my original dream of saving the world as a professional soccer player and community garden coordinator. Others my age are focused on getting a promotion at work, losing weight, starting a family, buying a house, and finding a good group of friends to grow old with.   Continue reading Accessing Welfare Is Easy →

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

Why Sick People Neglect Their Healthcare

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Have you ever seen the training videos for retail workers about the dangers of repetitive motion injuries? They came to mind the other day after a recent experience switching medications to treat my ankylosing spondylitis.

Managing ankylosing spondylitis – or any chronic disease – is like the momentum of a repetitive motion injury, but worse. Chronic diseases come with a slightly different package. With enough rest and care, a repetitive motion injury can heal and go away, but chronic (read: always there) diseases have no cure.

For example:

To get a new specialty prescription I must call my doctor, health insurance company, drug manufacturing company, and pharmacy multiple times over several days (or weeks) to finally get the medication in hand. Often guesswork determines who to call next because as a patient I don’t know where the process has stalled. It feels a bit ironic for me to be the last to know. I hear things like this on the phone: Continue reading Why Sick People Neglect Their Healthcare →

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

One of the ‘Some Days’

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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

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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 →