Current Events, Healthcare, Politics

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

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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 →

Advocacy, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, Heroes, Invisible disease, Patient Advocacy, Role Models, spondylitis, spondyloarthritis

Talking Ankylosing Spondylitis with Imagine Dragons’ Dan Reynolds

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I don’t always interview rock stars – it’s not really my thing. But this day was different. This was personal.

It was a chilly morning, much too early for my stiff body to roll out of bed. But this was a big day – I would soon be interviewing Dan Reynolds, the lead singer of Imagine Dragons.

“This wouldn’t be happening,” I thought, “if we didn’t share a wicked diagnosis.”

In late 2015, Dan announced during a show that he lives with Ankylosing Spondylitis (AS). A year later, he partnered with Novartis Pharmaceuticals Corporation and the Spondylitis Association of America to launch This AS Life Live!, an interactive talk show for and by patients living with AS.

Before I keep going, I want to express how lonely it can be to trudge through life surviving a disease that people do not know about. I spend substantial time and energy educating friends, strangers, and even doctors about my condition, which leaves little room for receiving compassion and empathy – like the supportive gestures people usually offer to someone who has a disease in the limelight. Everyone knows cancer is bad, but AS is not a well-known disease, so for a celebrity to name it on stage is life-changing. Continue reading Talking Ankylosing Spondylitis with Imagine Dragons’ Dan Reynolds →

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? →

ankylosing spondylitis, Charis, chronic disease, Current Events, Health Insurance, Healthcare, Medi-Cal, Medicaid, Politics

I Did Some Math to See if I Could Afford the American Health Care Act. Here’s What I Found.

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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. →

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