Category Archives: chronic disease

“The God of All Doctors,” Sterile Environments, & Dirty Medicine

I held a tissue over my face with both hands, pressing my fingers gently into both eye sockets to catch water before it flowed down my cheeks. I breathed in as waves of emotion erupted faster tears and a scrunched up face to hold them in.

I had begun crying mid-visit. Again.

Two years before, I had sat in the same chair and cried the same tears, but today I felt different. Stronger, in a way. Less afraid. The tears felt good.

I heard the doctor stop typing and swivel their desk chair to face me.

I breathed out. Continue reading “The God of All Doctors,” Sterile Environments, & Dirty Medicine

I’m Just Another Lazy Faker Living With Chronic Disease

Staying alive is my job.

Taking pills, managing side effects and flares, figuring out the best mix of treatments for each day’s changing symptoms. Playing medical mystery with my own body every 12 hours.

This is my life’s work.

Managing doctor conference calls and meetings each week to negotiate the most effective care to keep me alive. Navigating the ever changing healthcare system, using my body as a bargaining chip for its own survival through treatments. I am my own case manager. Continue reading I’m Just Another Lazy Faker Living With Chronic Disease

The Doctor Will See You Now

It’s the season of dropping things,┬áhips 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

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