Tag Archives: chronic pain

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

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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

Worth All the Regrets | My Third and Sickest Burn

 

Burning Man saved my life when I desperately needed a reason to keep living with chronic disease and disability. I owe it for reminding me what it means to be a whole human.

I return each year to the event in Black Rock City, a city that rises from the dust and becomes Home to around 80,000 temporary neighbors for 8+ days each summer.

Yet I risk a lot by simply showing up because of my Ankylosing Spondylitis (AS).

My medications severely dehydrate me, I’m at greater risk of sunburn and heat stroke, and symptoms can flare without warning especially if I push too hard. I don’t know what it’s like to not have pain; inflamed lungs make breathing difficult even without inhaling fistfuls of dust; debilitating fatigue can suddenly overwhelm me; and my body is weaker every year, making it difficult to explore without a chaperone lest I become unable to make it back to camp.

In a city where survival is part of living, my decision to be there is radically dangerous and bold.

The reality that every Burn could be my last as my body deteriorates is an unsettling feeling. I don’t want to stop going to Burning Man, but I also fear the inflated odds that I could have a health emergency in the middle of a desert with no access to cell reception or internet.

And during my third Burn, those odds almost won. Three times. Continue reading Worth All the Regrets | My Third and Sickest Burn

Painstipation, Ever Heard of It?

Salix Pharmaceuticals provided me with a stipend and paid for my travel and accommodations related to the event. However, all opinions are my own.

Poop. Number two. Bowel movement. Stool.

If it isn’t hard enough already to talk about living with my invisible, incurable disease and chronic pain, it’s even more difficult to talk about poop — or lack thereof: constipation caused by opioids, a medication I take to manage my chronic pain.

You’re laughing, right? Because I said poop. And I’m sorry not sorry for all the puns in this post.

When I was invited to attend a recent event to discuss Opioid Induced Constipation (OIC), my first reaction was, “Wait, what? Opioids can cause constipation?” I was shocked. I consider myself a well-informed patient and if even I didn’t know, I realized a majority of my audience probably doesn’t know either.

OIC Definition

At this Salix Pharmaceuticals event, I learned of the word Painstipation, which is known as the constipation caused by opioid pain medication in chronic pain patients, also known as OIC. Dr. Joseph Pergolizzi, Senior Partner and Director of Research of Naples Anesthesia and Pain Associates who spoke at the Salix event says, “Some chronic pain patients may not mention opioid induced constipation with their practitioner, so we need to have a ‘do ask, do tell’ policy. It’s important to realize that it starts with conversation. I like to use the phrase ‘Painstipation.’ These are chronic pain patients who are experiencing constipation due to their opioids.” Continue reading Painstipation, Ever Heard of It?