Tag Archives: Biologics

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, disability, Health Insurance, Healthcare, Medi-Cal, Medicaid, Mental Illness, open letter, Patient Advocacy, Politics, spondylitis, spondyloarthritis

An Open Letter to Congress from a Poor, Disabled American

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Dear Congress,

My father died last September. He was 68. He experienced severe, debilitating pain from his early teenage years until his death. I now experience similar pain from the same disease he had, Ankylosing Spondylitis (AS), and I fear daily that my life will follow the same path his did.

My dad looked like this (below) because he did not have access from a young age to effective treatments to slow down the progression of his disease:

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He didn’t have access to the treatments because they didn’t exist until 2003, when the first biologic drug was approved for treating patients with AS. By that time he was already a 90-degree hunchback, his spine fused in a rigid column of bone from knobby, painful bone spurs – he was slowly suffocating. The only thing a biologic drug could do was prolong his life and perhaps reduce some of the symptoms.

He died after two surgeries meant to straighten his spine, relieve his organs from being crushed, and give him a more horizontal line of sight. He’d been looking straight down at the ground for decades, unable to see in front of him unless he pivoted his body backwards with one foot pushed toe-first into the ground.

I learned I had AS in 2013 after a period of sudden, un-treatable illnesses that left me in pain and unable to breathe. Urgent Care doctors blamed my frequent visits on panic attacks and attempted to send me on my way with anxiety medication, but I knew my body better than that. Continue reading An Open Letter to Congress from a Poor, Disabled American →

Advocacy, ankylosing spondylitis, chronic disease, Invisible disease, Patient Advocacy, spondylitis, spondyloarthritis

Ankylosing Spondylitis: Are We at a Tipping Point?

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And I don’t just mean our bodies.

Recently, during a visit to the pharmacy, I noticed someone wearing the same compression gloves I was wearing.

“Hey, nice gloves!” I held up my hands to show mine.

She responded, “I have Raynaud’s.”

I said, “I have Ankylosing Spondylitis.”

…crickets. I might has well have just ripped off my clothes.

She looked as though I’d spoken another language. For a disease that is oh-so-NOT-rare, it sure feels like it in these instances. Not only is it a difficult pair of words to pronounce, people’s initial thoughts might revolve around names of dinosaurs – Ankylosaurus Spoondywhat?

Continue reading Ankylosing Spondylitis: Are We at a Tipping Point? →

#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 →