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:
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
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
Let’s say, just, you know, maybe, could be, hypothetically, I’m living under the Republican-proposed American Health Care Act.
And before I begin, I want to note that I did all of this without a preconceived notion of what the outcome would be. I chose pretty (really) conservative cost estimates to give the American Health Care Act the benefit of the doubt, and to see if, in a hypothetical situation, I would be able to afford the healthcare I need under the proposed system change.
Say I’m 30 (as I am) and, for this example, I’m still able to work. Let’s say I earn $30,000 per year. But it doesn’t matter what I make, because the “tax credit” is now based on age and not income (unless I make over a certain amount). So, as a 30 year old, I get a $2,500 per year tax credit to either A) put into an un-taxed health savings account, from where I can draw money to cover medical expenses, or B) go towards paying the premium of any plan I choose that is considered an “eligible individual health insurance policy” (for instance, I wouldn’t be able to use the tax credit for a plan that covered abortion). Let’s just go with option B for this experiment. Continue reading I Did Some Math to See if I Could Afford the American Health Care Act. Here’s What I Found.
The first time I used a wheelchair was after tearing my ACL during a college soccer match in Washington, D.C. in 2005. My teammates convinced me to use one when we visited the Holocaust Museum, instead of crutches. I remember feeling invisible. I remember being trapped in the middle of congested hallways and exhibit rooms, seeing nothing but the backs of people scooting around and in front of me like I was a planter box in their way. I remember feeling empathy for people who spend a majority of their lives in a wheelchair. I hardly remember anything about the museum from that visit. And I became terrified of ever needing to use a wheelchair again.
On January 21st, 2017, I rolled in the Women’s March on Sacramento alongside some 30,000 people. I have only recently, very reluctantly, decided to begin using a wheelchair because of deteriorating health. My experience from college still haunts me, but I am learning to embrace how much more fully I can participate in life by using assistive devices that reduce pain and fatigue caused by Ankylosing Spondylitis. It’s the difference between staying home and showing up.
However, I was nervous about navigating the march, even with friends to help push me. I expected that I would spend all my energy advocating for space just to be able to proceed in a straight line. I thought I might regret the decision to use the chair, even though not using it could result in being bedridden for days or weeks.
Would I return home wishing I had not gone? Continue reading A New Wheelchair User’s Experience at the Women’s March
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
I’m still proud.
…Of being a Democrat. Because we try to put in place policies that protect and assist the poor, the disadvantaged, the disenfranchised, the marginalized, the needy…people who are less-than by no fault of their own. I’m proud of being a Democrat because we don’t expect everyone has the ability to pull themselves up by their bootstraps but we do want everyone to flourish as best they can with the same or similar opportunities. I’m proud because we reach across the aisle even when our hands are slapped over and over, we accept defeat graciously and we continue our work even if we can’t have the title ‘President’ or ‘Senator’ on our lapel pins. Continue reading I’m Still Proud