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Advocacy, ankylosing spondylitis

Giving Back is About More Than Money

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I recently wrote a narrative about my relationship with the Spondylitis Association of America for #MyGivingStory, a campaign that focuses on people’s relationships with giving to nonprofits. The story I submitted was not a finalist, but I believe it deserves a life beyond that campaign.

I still remember calling the Spondylitis Association of America (SAA), declaring, “I’m going to be a poster child for Ankylosing Spondylitis (AS).” I had just been diagnosed with AS – a severe, painful inflammatory disease that mainly affects the spine/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. Over 2.7 million people have Spondyloarthritis (the type of disease AS is) in the United States – that’s more than twice the number of people who have Rheumatoid Arthritis. It’s also more than the number of people who have Lou Gherig’s disease (ALS) and Multiple Sclerosis (MS) combined. AS isn’t rare, but it often feels that way.

I was angry. So I became determined to use my physical strength and my pretty face to raise awareness of an ugly disease – I declared I was going to backpack across the country, give speeches, raise money, find a cure, and make Ankylosing Spondylitis a household name. Continue reading Giving Back is About More Than Money →

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, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, Health Insurance, Healthcare, Invisible disease, Medi-Cal, Medicaid, Patient Advocacy, sickness, spondyloarthritis

Biologic Human

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When I first began injecting myself in the leg with harsh, genetically-engineered chemicals, I was terrified. I still am. Not of the shot, but of the drugs going into my body to help manage my Ankylosing Spondylitis (AS).

Biologics, a type of specialty medication made from living cells and tissues, come with potential side effects like cancer, tuberculosis, and heart disease. When I first read the drug pamphlet, the dangers written in margins and between the fine print triggered my first post-diagnosis breakdown. I was 26, had been seriously ill just once in my life, and was finding my groove in the adult world. This was the first of many blubbering, head-throbbing, “Why the hell me?” temper tantrums that left me in a trembling blob on my bed.

What could possibly convince me to push this harsh medication through my body – maybe for the rest of my life? Logic and realism prevailed over emotions, and statistics were drowned out by my need to swallow the pill, so to speak. Above that consuming fear was a desire to have a semblance of my former life back, and this medication promised that possibility.

A week later, I sat in one corner of a large room with a nurse, shaking as I learned how to give myself a shot. She watched as I held my breath and pushed my thumb in and out, quickly, to trigger my first dose. My life flashed before my eyes and I cried precisely two silent tears – what had I done? Certainly now I would die of sudden-onset cancer, be ripped from life by tuberculosis, or my heart would fail in my sleep (if I was lucky). The contradictory decision to sustain life by injecting what I saw as a death-threat substance grabbed me with icy, bony fingers and shook me, hard.

The course of my life was now officially altered. I had joined the ranks of being specialized-medicine patient. I had taken the red pill.

Continue reading Biologic Human →