Tag Archives: chemotherapy

An Open Letter to Congress from a Poor, Disabled American

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

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There Are Worse Things Than Cancer

This will anger a lot of you.

It angers me, too. Likely because we don’t think about what we don’t already think about – that is, what we already know to be true. We’re good as humans at remaining steadfast in our knowledge of, well, what we already know. If you believe something to be true and then you are exposed to new information that may invalidate or challenge what you know, you can be thrown off your rocker.  Ignorance is bliss, but in no way is it a ticket out of learning and having your eyes opened. Sometimes growth – learning – hurts. A lot. And makes you angry.

That being said, are you ready to get angry? Ready or not… Continue reading There Are Worse Things Than Cancer