Category Archives: Grief

Advocacy, ankylosing spondylitis, chronic disease, chronic pain, Grief, Invisible disease, Relationships, sickness, spondylitis, spondyloarthritis

Your Friend Just Got Diagnosed with Ankylosing Spondylitis. What the Heck?

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First of all, what is Ankylosing Spondylitis (AS)?

Wait, how do you even pronounce it?

Ankylosing Spondylitis (An-kee-low-sing Spon-dih-ly-tuss) is a disease that causes inflammation throughout the body, especially in the spine and low back, and can cause bone spurs to fuse joints together, typically in the spine. As you can imagine, extra bone growing in your body that’s not supposed to be there can be quite painful. Additionally, since AS is systemic it can also damage organs including the eyes, liver, lungs, and more.

AS is generally treated by a specialist doctor called a rheumatologist. The clinical treatment recommended to slow down the progression of AS, as stated in the 2015 AS treatment guidelines published by the American College of Rheumatology, is a biologic drug if non-steroidal anti-inflammatory drugs fail (my understanding is that a combination of therapies is common, both pharmacological and complementary). A biologic is a specialty drug made from living cells (biologically, rather than chemically) that, in short, suppresses the immune system. In ankylosing spondylitis, the body constantly attacks itself, seemingly without a real danger present, which causes inflammation and damage. The biologic drugs slow that reaction but in doing so also decrease the body’s ability to fight infection. You can read more about how autoimmune vs auto-inflammatory diseases work here (hint: AS isn’t proven to be autoimmune).

So now that you know a teeny bit more about AS imagine you are the one who was just diagnosed with it.

Scary, huh?

Congratulations are in order simply because you are reading this blog post. It’s difficult to believe, but I often hear from people whose family and friends shun them for “faking being sick.” These same family and friends often don’t make an effort to learn what their loved one is actually experiencing. So thank goodness you believe your friend and want to learn more.

Continue reading Your Friend Just Got Diagnosed with Ankylosing Spondylitis. What the Heck? →

#sickbody, Charis, Christianity, Current Events, Episcopal Church, Grief, LGBTQ, Politics, Survivor, Women

I’m Still Proud

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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 →

Current Events, Death, Equality, family, Gender, Grief, Inequality, LGBTQ, Love, Mass Shooting, Relationships

Orlando Happens Every Day

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We say it would never happen here. It could never happen to me.

But it did happen. It happened to us. It happens every day, on street corners, in homes, at workplaces, on Facebook. Hatred isn’t always seen. Homophobia isn’t always obvious. But they’re always intrusive and divisive.

We on the receiving end are accustomed to being wary of holding hands or kissing in public because we know someone could be watching and choose to target us. Fear builds. And builds. And builds until we hide our identities, even from ourselves, when we leave the safety of our homes or keyboards. Some of us can’t hide (or pass) because we look too masculine to be a woman, too feminine to be a man, too gay to be straight – too much “them” to be “us.”

Queer love and existence has always been more private out of necessity and out of fear. We are keenly aware and constantly reminded that there are people who hate us for who we love or how we identify. It could be anyone, so we tread lightly in public, many of us. And now we are pushed even further back into our homes, our bedrooms, our closets…because maybe these are the places we’ll be safe. The only places we can be safe, maybe.

We don’t want to hide. Continue reading Orlando Happens Every Day →

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, disability, Grief, health, Healthcare, Invisible disease, Patient Advocacy, Relationships, Role Models, sickness, spondyloarthritis

My Struggle With Three Simple Words

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How are you?

Just three words.

Just three words silence my voice but incubate my thoughts.

The responses I want to give get caught in my throat as I open my mouth to speak; I gag wordlessly without any outward signs of panic; I feel a glass wall erect itself to support and contain my stoicism while I suffocate.

The words I want to use expand in my chest like air being pushed into an empty balloon, threatening to leak out of my mouth in a jumble of hot air and exhaustion.

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Usually I manage to push aside the wordlump in my throat so I can still breathe and respond in a socially acceptable way. I say polite things, or I say I’m not ok and try to change the subject.

Or I stand there awkwardly, ashamed and lime-lighted, drowning in my reality until I realize someone is waiting for my next move. Continue reading My Struggle With Three Simple Words →