Category Archives: chronic disease

Becoming Incurable | Help Make This Chronic Disease Documentary a Reality

Last summer I announced that I was being featured in Becoming Incurable, a film featuring the stories of three people in Sacramento, California, each living with different chronic diseases: Ankylosing Spondylitis, Lyme Disease, Mold Illness, and Dystonia.

In that announcement I said:

Since that day in February when I received Victoria’s (filmmaker/director) email, I have welcomed her into my life with Ankylosing Spondylitis and hidden nothing from view.

I am heartened by Victoria’s passion, curiosity, and talent in videography and visual storytelling. I am humbled by her desire to make this more than a film. She has poured heart and soul into this and I have witnessed her feel deeply and dream big as she has jumped into the deep end with us three professional, chronic survivors.

What I didn’t realize, even when I told all of you that I was in the film, was how big of an impact it would have in the chronic disease community even before the movie itself was ever finished! Becoming Incurable has become much more than a film; it has become a platform empowering people to share their own stories and lives with incurable diseases, largely thanks to the passion and drive of director/filmmaker Victoria.

Becoming Incurable Banner Image
Voices of the Chronically Incurable

Becoming Incurable, which is scheduled for release in 2019, has already been telling short stories of people living with chronic diseases in the USA and abroad in “Inside Incurable Lives” video episodes and audio-digital magazine issues (find the latest issues on Facebook or the film’s website).

Continue reading Becoming Incurable | Help Make This Chronic Disease Documentary a Reality

Advertisements

I Will Never Graduate from Treatment

​Many months ago during a routine drug treatment I heard a happy commotion and looked up to see balloons entering a private room across the infusion center. Noticing my curiosity, the nurse checking my vitals offered, “Last day of chemo.”

My lips curled upward into a celebratory smile, but it was interrupted as a different feeling suddenly took my breath away.

“Oh,” I breathed in sharply, “I’ll never get balloons.”

I was crushed.

The nurse asked, “What are you receiving infusions for?”

“Ankylosing Spondylitis,” I ventured, waiting to see if I would need to explain the disease to her.

“Oh, yes,” she replied, “I have Rheumatoid Arthritis. Perhaps we can bring you balloons for your next infusion?”

Someone walking by offered me a cupcake. I shook my head, no. Continue reading I Will Never Graduate from Treatment

27 Gifts for Someone with Ankylosing Spondylitis

FYI: if you purchase something through a link in this post I may receive a small commission, but it will not change the amount you pay for the item.


While gift-giving is common for special occasions and during the holiday season, people living with Ankylosing Spondylitis (AS) could use a little extra love year-round. Here’s a long list of items I use almost daily (I really have used all these items recently)! The prices I included are as of the date this was written:

Hot or cold? 

1. This Sunbeam Quilted Heated Mattress Pad ($70) is a little on the expensive side, but the extra padding covers the wires so you can hardly tell they are there.

2. This moist heat Battle Creek Electric MaxHEAT Pad ($65) is also pricey, but after over two years of regular use mine is still going strong. The cover is washable. Be aware that this pad gets super hot!

3. This style of Hot and Cold Reusable Ice Pack ($7) has been around for a while, but it still works really well!

Things to wear

Continue reading 27 Gifts for Someone with Ankylosing Spondylitis

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

 

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?

Dear Prescription Opioid Debaters:

Dear debaters,

I am a 30 year old who inherited a lifelong inflammatory disease called ankylosing spondylitis (AS). AS can cause the spine to fuse together from bone spurs and can affect organs and other joints. AS causes significant pain, to put it lightly.

I am also a former college athlete and marathoner. I know what it means to push through pain as an athlete. But I cannot push through the pain caused by my disease. Pushing through it causes the disease to progress and the pain to increase.

My main treatment is a drug made from living cells (the same class of drugs that treats many cancers); it helps slow the progression of my disease. Because this treatment is [finally!] working, it also reduces some of the worst symptoms. But AS is a severe disease with no cure, so even with this specialty drug I still have plenty of pain.

And, like millions of chronic pain patients who fight simply to survive daily, I’ve tried everything to control the pain. Continue reading Dear Prescription Opioid Debaters:

What I Wish You Knew About Living with an Invisible Disease

You may look at my young, healthy-appearing body and ask, “You’re sick? Why don’t you suck it up and try harder? Why haven’t you tried XYZ?”


What you see is the poker face I’ve spent years creating, the one that allows me to pass in an able-bodied world so I don’t spend every moment defending my disease to faux-cure-evangelists.

What you don’t see is that I’m faking health to preserve my dignity, energy, and ability to accomplish whatever task it is I have to do before I collapse. Faking it is hard, but it’s easier than displaying my pain and then having to use more energy to defend my body’s permanent sickness.

What you don’t see are the grimaces I make when I’m in a safe place, when I allow myself to actually respond to the pain that is unrelenting, the pain that I do my best to ignore in public.

What you don’t see is the fear underlying my existence. Will I die young? Will I lose healthcare? What if my disability is denied? Will this new treatment work? Will I become homeless? Will I find a forever partner?

Continue reading What I Wish You Knew About Living with an Invisible Disease

The Skeleton I Found at Burning Man

 

I attended Burning Man for the first time in 2016. It was the best thing that could have happened for me at that point in my life. I left feeling invigorated and revived, having reclaimed permission to love my broken self again.

I thought Burning Man had given me a new lease on life, but it had actually prepared me to deal with my dad’s sudden death. It was a blessing disguised by what had initially been a more exciting package.

Every burn is different. For me, 2016 was life-giving even in the face of my father’s death. So when I returned to the default world after the event, Black Rock City remained a beacon of hope. It had been my last hurrah before shit hit the fan, like my innocence had been left there.

I spent the next year slogging through continued trauma and unraveling stability. In many ways, the memory and distraction of Burning Man kept me going. My dad had died. I lost and couldn’t regain weight. Trump was elected. My healthcare was threatened multiple times by Congress. Cross-country travel to manage my dad’s estate was physically taxing. Changes in medications caused my appetite and weight to drop even further. And I entered the verge of homelessness.

I was desperate to return to the place that had saved me. So return I did.


The 2017 Burn could not have come at a better time. I arrived in Black Rock City the most broken I have ever been, with very little self-worth remaining. The three things I had managed to hold onto were hope, a shred of determination, and memories from the previous year. Continue reading The Skeleton I Found at Burning Man