My Search for Clean Air in a World Blowing Smoke | California on Fire

I don’t usually have an emotional attachment to the appliances in my home. In general I don’t think much about the refrigerator, toilet, or my kitchen table. Unless they break or smell bad. Then I have some emotions, but not good ones.

But I just got an air purifier and I’m definitely emotionally attached.

This isn’t a post about the air purifier though. I figured you’d want to know ahead of time that this is not a post hailing the low-intelligence robot performing air quality CPR in my living room. I’m sorry if you were here for that.

In all seriousness, wildfires and a medical crisis brought a community of people to this impoverished person’s nostrils. My people showed up and breathed life back into me. Literally.

Kind of. Continue reading My Search for Clean Air in a World Blowing Smoke | California on Fire

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Ankylosing Spondylitis Eradicated? A Post-Apocalyptic Fantasy Called GreenEva

February 17th, 2073.

Everything was eerily calm. Aside from a few fiery crashed planes and the last of the human-powered trains derailing, the world was quiet. Too quiet, except for hungry dogs with full bladders barking inside suddenly empty houses.

Traffic lights changed from yellow to red, red to green, then yellow to red again. Clock towers struck 9:00 AM and the Times Square marquee scrolled unchanging stock market shares. Swing sets swung and flags unfurled in the breeze.

This wasn’t the post-apocalypse sci-fi anyone had read as a teenager.

People had simply vanished. Poof.

The dark green fog, Green Evanescence, had taken every human with it.

Almost every human. Continue reading Ankylosing Spondylitis Eradicated? A Post-Apocalyptic Fantasy Called GreenEva

Disabled Deputy On a Roll

I became a self-titled Episcopal Church Geek as soon as I learned the proper order in which to extinguish altar candles, when I was 7-ish. My early days as an acolyte are blamed on my desire to be just like my closest older brother, who is five years my senior. But, once in, I was so enamored with being part of how church functioned that I never thought of leaving.

I was hungry for more. 

It could seem cult-ish to say I’ve never questioned my faith, but in all honesty that’s the truth. Because the norm in my religious upbringing was that I was encouraged to ask tough questions of God, the Bible, the preacher, our beliefs, rituals, and more. The thing that allowed me to never question my personal faith was the fact that I had permission to question everything about it. The very freedom that I could so easily walk away meant that I had a reason to find out why it was important to stay. 

I was 16 or so when I thought I wanted to be a priest, but it would take another 15 years before I would find my true calling as an Episcopalian. I’m still figuring out the whole priest thing.

This post explores some of the ways I am beginning to bridge my “in real life” disability and chronic disease advocacy work with my passion for helping The Episcopal Church truly welcome everyone. Continue reading Disabled Deputy On a Roll

Medical Pinkwashing and the Gender Binary

Content advisory: this post discusses experiences and examples of medical spaces being uncomfortable/unsafe for people who identify as transgender, genderqueer, nonbinary, or another related identity.


I made this a blog post after publishing it on my personal facebook page and several people commented that they had no idea these experiences existed. I realized it should reach a wider audience. I’ve posted it below without editing except to emphasize certain words and I’ve also added some links for further education.


I’m pretty sure you are aware of the pinkified, radically femme and feminized culture of breast health issues, breast cancer, and the typically-broadcast stereotype that only cisgender women experience them.

I’m pretty sure you all are also aware that all genders and body types can have breast medical issues despite the above-mentioned stereotype.

But I think many people aren’t aware of what it can feel like to be in a medical space intentionally geared towards women’s breast care if you are a nonbinary, genderqueer, or transgender (and other identities) person. Or a cisgender man.

Continue reading Medical Pinkwashing and the Gender Binary

In Support of Rent Control in Sacramento

I’m a severely low-income resident of Sacramento.

This might surprise you considering I’m pretty well-known for my advocacy related to healthcare, disability, and chronic diseases. You’ve seen me on the Sacramento TEDx stage, the Women’s March on Sacramento, in press conferences and on healthcare panels, in this upcoming documentary, and in numerous television interviews about national healthcare policies.

Someone so steeped in the public eye shouldn’t have a worry about housing, right?

Yet what I haven’t talked about publicly is my very fear of becoming homeless. I’ve reached out to local representatives about my fears only to be redirected or ignored completely. It’s time you know what it’s like for me facing barriers to safe, stable, affordable housing in Sacramento, California.

Mid-June 2018 I was officially granted permanent disability benefits, Continue reading In Support of Rent Control in Sacramento

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?

I Talked with Zach, the Try Guy with Ankylosing Spondylitis (Part II)

Since Zach’s vlog announcement of his Ankylosing Spondylitis (AS) diagnosis in September 2017, the video has been viewed over 4.9 million times (as of time of this publication).

In part one of this series I talked about Zach’s story’s impact, the validation that came with his diagnosis, and lessons learned living with a disease that is always beneath the surface.

In part two I dive deeper into Zach’s decision to announce his diagnosis on YouTube, his approach to coping with AS, and whether he calls himself an advocate. Finally, I’ll share his exclusive message to the AS community.

Before I continue, I want to clarify that I am neither doctor nor medical professional. None of the following should be taken as diagnostic, medical or treatment advice. Please consult with your physician before starting, stopping, or changing treatment.

Let’s get started.

Why the video? Continue reading I Talked with Zach, the Try Guy with Ankylosing Spondylitis (Part II)

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