Category Archives: chronic disease

The Doctor Will See You Now

It’s the season of dropping things, hips and elbows knocking door frames, “Will this flare ever end?” weeks, buckling knees on flat ground, brain fog competing with memories of the years when I felt younger than my age.

It’s the season of “But you don’t look sick, you look Great!” and “Have you tried yoga?”

It’s the season when, as soon as the door latches shut, the safety of our homes becomes the hell of letting our guards down, removing the mask. Our yoga is the inching off the bed on our bellies, gripping the prescription bottle to suck down a pill and doze for 30 minutes in half-inchworm-half-human-pose before grasping our walker to pee in the middle of the night with shuffle-steps amid stifling stiffness and the pain of partially fused joints that used to swim in the joint juice of cartilage. Chronic yoga.

“Yes, I already do yoga. Maybe I’ll show you sometime.” Continue reading The Doctor Will See You Now

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The Disease Everyone Loves to Hate

Content note: this post discusses the topics of suicide and death.


I had a pretty good treatment day recently.

I didn’t even get upset that a new nurse tried and failed to get my infusion started. What’s another blown vein, anyway?

The infusion team was excited because they thought they’d seen a picture of me on a Facebook ad (it wasn’t me) – they’d even saved a screenshot to show me. My conversations with the nurses were light-hearted before I transitioned into catching up on emails.

I hid myself in my favorite corner where I can sometimes pretend I’m the only one in the room and I nearly forgot I was in a building with the word “cancer” all over the front of it.

I love the infusion team. And I better love them – these are treatments that I’ll need for the rest of my life unless this drug stops working or a better treatment shows up. I’m what you call incurable.


But as I was leaving my appointment I almost walked into a vendor table being set up for an event. On the table was a sign reserving it for a lingerie business. And then my eyes caught something else: pink.

Pink was everywhere. Rose petal fabric. Pink shirts. Pink everything. Pink was in the air. It smelled pink.

October. Breast Cancer Awareness Month.

I can’t explain how crushing it was to leave my better-than-usual treatment, then turn the corner into an explosion of pink for an event that screamed, “You’re in someone else’s space.”

I have Ankylosing Spondylitis. The infusions I receive for my disease happen in a medical complex named Mercy Cancer Center. Every time I enter the building I see the name in big bold letters above the door and behind the check-in desk. While I wait for my appointment I see poster-sized lists of support groups and special events specifically for people with cancer. Continue reading The Disease Everyone Loves to Hate

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

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