Tag Archives: spondylitis

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

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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)

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

I Told My Story at the 2018 Women’s March in Sacramento

Below is a video and transcript of the speech I gave at the 2018 Women’s March in Sacramento. The current video may be updated with an official rally video after it is released.


(Video courtesy of Darcy Totten, Activism Articulated)


Sacramento!!!

My name is Charis.

Five years ago I was asked to testify on a bill and I said to the person, “I am nobody, how can you expect me to say anything to convince these lawmakers to choose the right thing?”

She said, “Charis, all you have to do is share your story. Nobody can tell your story for you.”

Sacramento! Can you share your stories? That’s all you have to do.


I’m a former college athlete. I graduated magna cum laude from a women’s college and I paid off my college loans in 6 years. I could do anything!

But.

Then I was diagnosed with Ankylosing Spondylitis. You can’t tell because I’m hiding the pain, but Ankylosing Spondylitis hurts like hell and my body’s working overtime just to survive. I also live with Post Traumatic Stress Disorder, Depression, and Anxiety.

In 2016, I made the hardest decision of my life. I applied for Social Security Disability. Now, two years later, I am still waiting for a decision on my case. For two years I’ve been surviving on savings and occasional financial help. But with Sacramento’s rent rising astronomically and my savings and health in decline, my future is uncertain at best. Continue reading I Told My Story at the 2018 Women’s March in Sacramento

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