Category Archives: chronic disease

#sickbody, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, Health Insurance, Healthcare, Invisible disease, Medi-Cal, Medicaid, Patient Advocacy, sickness, spondyloarthritis

Biologic Human

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When I first began injecting myself in the leg with harsh, genetically-engineered chemicals, I was terrified. I still am. Not of the shot, but of the drugs going into my body to help manage my Ankylosing Spondylitis (AS).

Biologics, a type of specialty medication made from living cells and tissues, come with potential side effects like cancer, tuberculosis, and heart disease. When I first read the drug pamphlet, the dangers written in margins and between the fine print triggered my first post-diagnosis breakdown. I was 26, had been seriously ill just once in my life, and was finding my groove in the adult world. This was the first of many blubbering, head-throbbing, “Why the hell me?” temper tantrums that left me in a trembling blob on my bed.

What could possibly convince me to push this harsh medication through my body – maybe for the rest of my life? Logic and realism prevailed over emotions, and statistics were drowned out by my need to swallow the pill, so to speak. Above that consuming fear was a desire to have a semblance of my former life back, and this medication promised that possibility.

A week later, I sat in one corner of a large room with a nurse, shaking as I learned how to give myself a shot. She watched as I held my breath and pushed my thumb in and out, quickly, to trigger my first dose. My life flashed before my eyes and I cried precisely two silent tears – what had I done? Certainly now I would die of sudden-onset cancer, be ripped from life by tuberculosis, or my heart would fail in my sleep (if I was lucky). The contradictory decision to sustain life by injecting what I saw as a death-threat substance grabbed me with icy, bony fingers and shook me, hard.

The course of my life was now officially altered. I had joined the ranks of being specialized-medicine patient. I had taken the red pill.

Continue reading Biologic Human →

#sickbody, Advocacy, ankylosing spondylitis, Charis, chronic disease, chronic pain, disability, Invisible disease, open letter, Patient Advocacy, sickness

Dear Gate Agents and Flight Attendants, From People Who Don’t Look Disabled

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Dear gate agents,

I’m one of those passengers who shouldn’t be in the pre-board line.

You know the ones.

I’m dressed nicely and I have makeup on; I appear healthy and able-bodied. I don’t use a wheelchair. I’m young. I sometimes sit on the floor and stretch. Aside from my pillow and sometimes my cane and wrist braces, there is not much evidence pointing to a broken body. According to popular opinion, I don’t look disabled.

You want to do your job well, and part of that is accommodating people with disabilities. But often, when I request a pre-board pass, you look at me like maybe I’m cheating, like maybe I learned a trick somewhere just to get a better seat or not wait in line. Maybe you think I’m smug or even entitled. Sometimes you question if I need the pre-board pass on the basis of disability right after you sweetly, wordlessly hand one to the woman in front of me Continue reading Dear Gate Agents and Flight Attendants, From People Who Don’t Look Disabled →

#sickbody, Advocacy, Charis, chronic disease, chronic pain, Current Events, Death, disability, health, Health Insurance, Healthcare, Inequality, Invisible disease, Medicaid, Patient Advocacy, Politics, sickness, SSDI

Repealing Obamacare Could Kill me

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The Affordable Care Act (affectionately termed Obamacare) is likely to be repealed in a few months.

I’m told personal stories are powerful, so I want to share mine.

I was always going to be healthy. Aside from a slight concern when I quit a job that offered health insurance and took another job without it, I never once considered I would need a team of doctors. I boast a background as a college athlete, professional mover (yes, heavy furniture, etc) and otherwise health-aware person.

But my body lied to me.

Nearly four years ago, I was diagnosed with Ankylosing Spondylitis, a severe disease that causes rampant and painful inflammation in the spine and other joints in the body, sometimes leading to the growth of bone spurs that fuse spinal vertebrae and hips. I wasn’t diagnosed by a healthcare provider at first – I found out I inherited this disease from my father after matching our symptoms.

Four years ago, I had a dilemma. Continue reading Repealing Obamacare Could Kill me →

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, Burning Man, Charis, chronic disease, chronic pain, disability, Invisible disease, spondyloarthritis, Survivor

Burning Man and My Disease

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An oft-used quote at my alma mater is: “From the outside looking in, you can never understand it. From the inside looking out, you can never explain it.”

This year I went to Burning Man, an arts, music, and alternative lifestyle event/”festival” in Black Rock Desert in Nevada. Upwards of 70,000 people come together every year the week leading up to Labor Day to party, play, explore, gift, create, and survive in the middle of a desert complete with dust storms, extreme temperatures, and limited access to resources. You just have to experience it.

Aside from a desire to engage in a society where clothes are optional, costumes are revered, and money is virtually outlawed; I needed an escape from my life which, in short, has never been easy. I needed the spiritual retreat my priest experienced at his first Burning Man in 2015.

My initiation as a virgin to Black Rock City involved hugging a naked man, hitting a gong, and rolling in the dust. Immediately, I was Home.

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Sculpture by Laura Kimpton

I went to Burning Man intending to spend time at the Temple, where people leave things they need to release: prayers, tokens, fears, celebrations, memorials. There are weddings, funerals, meditations, and services; people crying and hugging and others alone in silent introspection. It seems the Temple consistently attracts a larger crowd than any other place in Black Rock City. It’s a place to take a breather from partying, to find a safe space from an overwhelming emotional experience, to celebrate or remember, or just stop and feel. As with all things Burning Man, the Temple does not stay. We cling to its temporal nature and wait for it to be set ablaze the final night, cleansing us of whatever we left there. It’s a symbol of transition and release. Continue reading Burning Man and My Disease →