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

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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)

I talked with Zach, the Try Guy with Ankylosing Spondylitis (part I)

When Try Guys member Zach Kornfeld announced he has Ankylosing Spondylitis (AS) in September 2017 I was so relieved.

I know what you’re thinking. Relief sounds super self-centered, so let me say right now that I was also really sad for Zach’s diagnosis; I wouldn’t wish Ankylosing Spondylitis on my worst enemy. But when you live with a common-but-unknown disease, awareness is what you live for.

Well, it’s what I live for anyway. And when a celebrity makes an announcement a lot of people pay attention.

Zach’s video marked the second “Ankylosing Spondylitis coming out” by a celebrity figure in two years (Dan Reynolds announced his in 2015) and it made a big splash in the AS community. Spondylitis Twitter was buzzing. Spondylitis Facebook and Instagram were buzzing, etc etc. It was exciting to see someone talking frankly about AS to a really large audience (as of April 27, 2018 the video had nearly 4.9 million views). Zach was telling all our stories by telling his own and we clung to this moment as a chance to be seen and heard.

Here, let me lay this out for you better.

Ankylosing Spondylitis is an immune-mediated inflammatory disease that can progressively damage joints in the body, especially in the spine, and in some cases cause the spine to fuse into a column of rigid bone. Additionally, AS is a systemic, or whole-body, disease; so it can cause fatigue, cognitive impairment, sleep impairment, and damage multiple organs in the body. There is no cure, so the goal for treatment is to reduce inflammation to slow the progression of the disease and manage symptoms.

Many of us who have AS had never even heard of the disease before a doctor sat us down and opened their mouth to a flood of slow motion gibberish, “You have A n k y l o s a u r a s d i n o s a u r S p o o n d a c t y l a u r u s B l i b b i d y B l o p p i d y B o o.”

Then, as if our disease isn’t hard enough to pronounce, our own friends and family struggle to even understand what we’re experiencing and that it’s serious. And a lot of general practitioners have already forgotten the one paragraph about AS they read during medical school. There are even rheumatologists (the specialists who treat AS) who refuse to diagnose women. More about that another time.

And yet AS affects so many people. Ankylosing Spondylitis falls under an umbrella of diseases called Spondyloarthritis, which affects an estimated 2.7 million people in the USA alone. That’s more than Amyotrophic Lateral Sclerosis (ALS)/Lou Gherig’s Disease, Multiple Sclerosis, and Rheumatoid Arthritis combined. Estimates vary regarding the number of people specifically with AS in the US, but it is the most prevalent type of Spondyloarthritis. That’s a LOT of people.

I wish nobody had AS, but since a lot of us do and we largely suffer in silence, Zach’s video was cause for celebration – not for his being diagnosed, but for his willingness to talk about it in front of millions of people.

When I saw his video I knew I wanted to help his story reach more people. I knew I wanted to talk to him.

So six months later I reached out to him about a chronic disease documentary I’m in (shameless plug) and it turned into a Skype interview.

Continue reading I talked with Zach, the Try Guy with Ankylosing Spondylitis (part I)

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

16 Things I Take to My Infusions for 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.


When I began receiving infusion treatments for Ankylosing Spondylitis I had no idea how to prepare for my appointments. What do I bring? What do I wear? Do I need a ride?

Now, well over a year of regular infusions later, I often tell people that infusions are my favorite appointments because I actually feel like a patient. All I have to do is show up and be treated; I don’t have to steel myself for a consultation, review medical records ahead of time or expect to receive a new diagnosis or a change in medication. I just show up, get poked with a needle and catch up on emails or Facebook until I fall asleep. Minus the awkward IV pole, it’s the perfect SpA treatment (all you Spondyloarthritis folks got that joke, right?).

Here is my list for infusion days:

Continue reading 16 Things I Take to My Infusions for Ankylosing Spondylitis

Giving Back is About More Than Money

I recently wrote a narrative about my relationship with the Spondylitis Association of America for #MyGivingStory, a campaign that focuses on people’s relationships with giving to nonprofits. The story I submitted was not a finalist, but I believe it deserves a life beyond that campaign.


I still remember calling the Spondylitis Association of America (SAA), declaring, “I’m going to be a poster child for Ankylosing Spondylitis (AS).” I had just been diagnosed with AS – a severe, painful inflammatory disease that mainly affects the spine/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. Over 2.7 million people have Spondyloarthritis (the type of disease AS is) in the United States – that’s more than twice the number of people who have Rheumatoid Arthritis. It’s also more than the number of people who have Lou Gherig’s disease (ALS) and Multiple Sclerosis (MS) combined. AS isn’t rare, but it often feels that way.

I was angry. So I became determined to use my physical strength and my pretty face to raise awareness of an ugly disease – I declared I was going to backpack across the country, give speeches, raise money, find a cure, and make Ankylosing Spondylitis a household name. Continue reading Giving Back is About More Than Money

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a voice for many

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