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

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Talking Ankylosing Spondylitis with Imagine Dragons’ Dan Reynolds

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

Ankylosing Spondylitis: Are We at a Tipping Point?

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?

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

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 Dangers of Funding Medicaid with Block Grants; a Patient’s Perspective

When the Patient Protection and Affordable Care Act (AKA Obamacare) was written, the plan was for Medicaid expansion to provide health insurance for people who made too little to qualify for a subsidy to purchase a plan, but too much to qualify for Medicaid under the rules of the past. The goal was to create a system in which no one would fall into a so-called “coverage gap,” and poor people would have access to care regardless of their income.

It worked – for states that adopted the expansion.

A little-known hiccup (ok, heart attack) is that the Supreme Court declared Medicaid expansion optional for states, rather than mandatory. As of January 2017, 32 states have opted in to the expansion (including DC) and 19 states have not. In states that have not opted to expand Medicaid (because of politics) the coverage gap has caused many people to be unable to access affordable insurance or care. This New York Times Magazine article explores the struggles of some of these people: Life in Obamacare’s Dead Zone. However, in states that have opted into the expansion healthcare premiums have risen less sharply and more people are insured.

Case in point: me. I live with a debilitating disease called Ankylosing Spondylitis. I need specialized treatments and medications to slow its progression and prolong my life. Because I’m disabled and cannot work, I am poor, so I am one of over 14 million Californians and over 74 million Americans who receive Medicaid. It is my only option for healthcare. Continue reading The Dangers of Funding Medicaid with Block Grants; a Patient’s Perspective

Participate in The Spondy Project. Get Paid.

About a year ago I connected with the folks of Self Care Catalysts and downloaded their free app, AS Health Storylines (available on android and Apple products), that helps track medication, symptoms, diet, appointments and more. This, and other apps, has helped me – sometimes I need a reminder to take a certain medication; I also like all this information in one place so I can share it with my doctor and disability attorney.

Recently, Self Care Catalysts has also unveiled The Spondy Project, a paid research opportunity for patients with Ankylosing Spondylitis and other forms of Spondyloarthritis. Participants can receive up to $100 for sharing their experiences through an app for up to four months. Read more below to see why I think you should sign up: Continue reading Participate in The Spondy Project. Get Paid.

14 Ways To Become a Chronic Disease Advocate

There is not a one-size-fits-all way to become a chronic disease advocate or activist. Everyone’s journey will be shaped by personal experiences, interests, time and ability.

I’ve gathered these tips from my own journey, but by no means is this an exhaustive list and I don’t recommend attempting them all at once. Also, while directed at people who have chronic diseases, these tips can apply to partners, caregivers, friends and family who want to become allied advocates.

As long as the end goal is to raise awareness publicly for the sake of social or political change, there is no inherently wrong way to create an advocacy platform.


1) Get comfortable telling your own story. Come out as sick. Introduce your disease to friends, family, and peers in a manner that also outlines your clear desire for them to listen – you may even need to say, “This is my story and unless you have lived it, I expect you to really hear me.” No one can tell your story for you and owning your experience can be empowering. Also consider that there are hundreds, thousands, or millions more people experiencing the same things you are.

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Charis giving a TEDx talk in Sacramento, CA in September 2016

Continue reading 14 Ways To Become a Chronic Disease Advocate

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