Tag Archives: lyme disease

Becoming Incurable, chronic disease

Becoming Incurable | Help Make This Chronic Disease Documentary a Reality

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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 →

Advocacy, ankylosing spondylitis, Becoming Incurable, Charis, chronic disease, Heroes, Patient Advocacy, spondylitis, spondyloarthritis, Survivor

Watch This Trailer For “Becoming Incurable,” a Documentary About Chronic Disease

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The day before I turned 30 I received an email that would change my life.

It is not abnormal for me to receive emails from chronic disease patients, news outlets, doctors, and advocacy groups.

But this email was from Victoria, a videographer, sharing her vision of a documentary highlighting the stories of three people living with physically debilitating, incurable diseases. She wanted me to be one of them.

Participating would require me to open my heart, home, and schedule to her camera lens, questions, and vision. Saying no never even crossed my mind. Continue reading Watch This Trailer For “Becoming Incurable,” a Documentary About Chronic Disease →

Advocacy, Arthritis, chronic disease, chronic pain, Invisible disease, Patient Advocacy

There Are Worse Things Than Cancer

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This will anger a lot of you.

It angers me, too. Likely because we don’t think about what we don’t already think about – that is, what we already know to be true. We’re good as humans at remaining steadfast in our knowledge of, well, what we already know. If you believe something to be true and then you are exposed to new information that may invalidate or challenge what you know, you can be thrown off your rocker.  Ignorance is bliss, but in no way is it a ticket out of learning and having your eyes opened. Sometimes growth – learning – hurts. A lot. And makes you angry.

That being said, are you ready to get angry? Ready or not… Continue reading There Are Worse Things Than Cancer →

#sickbody, Advocacy, ankylosing spondylitis, chronic disease, chronic pain, disability

When you see me I’m acting

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When you see me in public I’m putting on a show. Curtains and…action. Seriously. All the world’s a stage.

Especially when you’re sick. And I mean sick.

Whether you have cancer, ankylosing spondylitis (AS), multiple sclerosis (MS), lyme disease, amyotrophic lateral sclerosis (ALS), fibromyalgia, gastroparesis, vitiligo, rheumatoid arthritis (RA), depression, anxiety, post-traumatic stress syndrome (PTSD), etc etc etc, or a mix of more than one extreme disease, you’ll probably relate to the desire for “normalcy” in this post.

Continue reading When you see me I’m acting →