Tag Archives: AHCA

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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You Should See What the AHCA Has Already Done to My Health

My life is at stake.

You haven’t seen me on social media much lately. This is because the first battle to keep the Affordable Care Act in place – 5 weeks ago – did me in. I haven’t been the same since. My mental health has dipped to depths I never knew existed. I can’t eat. I’ve lost 10 pounds (have you seen how thin I already was????).  I can’t focus on faces, voices, places, things. And I’m in such awful, awful pain. I thought I was broken before – it’s worse now.

I didn’t know it could get worse.

I’m scared for myself; not for what I might do, but for what my body continues to lose. I’m functioning on the surface, but then again, charades was something I always won. My life feels more foreign each day.

You would have thought I breathed a sigh of relief and celebrated when Speaker Ryan pulled the American Health Care Act in March, not having enough votes.

No. I did not exhale. Or celebrate. Continue reading You Should See What the AHCA Has Already Done to My Health