I Said “Yes” to Big Pharma

I didn’t want to start this blog.  I knew it would get me in trouble.  The kind of trouble that puts me in front of a crowd of 200 people from around the world to talk about what it’s like to live with Ankylosing Spondylitis.  I’m in trouble. Big time.

I didn’t want to dive into something bigger than I could handle – something that had the potential to amplify my voice into something like…well, like this conference I’m going to in San Francisco the first weekend in November. I’ve really done it now.

Continue reading I Said “Yes” to Big Pharma

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Remembering Rachael, Raising Ruth

Rachael died the day before her daughter was due to be born.

But baby Ruth was already over four months old when Rachael died. She was born so early she weighed less than a pound – 0.95 pounds, to be exact. That’s less than the weight of a four-stick package of butter.

Our physical bodies are on loan to us.  They will die. It is our spirit bodies that are unique and will never die.  It is our spirit bodies that fall in love; our physical bodies only transmit it through touch. It is what we leave behind of our spirit bodies, our love, that becomes our legacy. Continue reading Remembering Rachael, Raising Ruth

Come, let us follow the Rt. Rev. Michael B. Curry to Galilee

Clergy of Trinity Cathedral in Sacramento, CA, Summer 2015
Clergy of Trinity Cathedral in Sacramento, CA, Summer 2015

The Episcopal Church is going Jesus on you. And this is no Jesus you’ve ever been hurt by. This is the life-affirming, love-giving Jesus who is everywhere. He’s at Pride, he’s at the bus stop, he’s at Burning Man, he’s in your kitchen. And everywhere he is, he’s giving people hugs and cake. Continue reading Come, let us follow the Rt. Rev. Michael B. Curry to Galilee

Trailblazing Ranger Women and Girls Playing With Boys

This Friday, October 16th, 2015, Major Lisa Jaster, the third woman to make it through the grueling Ranger School, is expected to graduate and walk away with her well-deserved Ranger tab.  I’m no Army woman. I’m no fan of war or the need for a military.  In fact, I’m a complete pacifist.  But that does not keep me from being proud of trailblazers like Major Lisa Jaster, Captain Kristen Griest and 1st Lieutenant Shaye Haver to remind the world that we – women and men – are more alike than we are different and we [should] have equal access and opportunity in the world.

These women, these fantastic rangers, are each “one of the boys” you could say.  Or not. Continue reading Trailblazing Ranger Women and Girls Playing With Boys

When you see me I’m acting

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

To the stranger who told me I’m not disabled

Most of the time, when people ask for help, they really need it.

Friends at the 2015 Sacramento Arthritis Foundation Walk to Cure Arthritis
Friends at the 2015 Sacramento Arthritis Foundation Walk to Cure Arthritis. Left to right: Cyd, Mel, Charis, Denice, Lori

And many of us are scared to ask because we’re afraid we’ll be attacked for it. A good friend recently put a crowdfunding page together in an effort to help me resist homelessness and survive the winter while I seek Social Security Disability Insurance (SSDI). Today, another friend shared the YouCaring link (edit 2/10/16: link no longer live) on her facebook page in support of me.

What happened next shocked me. Someone commented on my friend’s post about the youcaring campaign to help me. And it wasn’t supportive. It was along the lines of, “When I am hurting I still get up and go to work. Your friend should find a job, she can work.” I engaged in conversation with this person over several hours and took screenshots of the whole interaction, knowing the person might later delete her comments (which she did). My effort was to see her side of the story – and in the end it came out that she had lost a child years ago and she was projecting her grief onto me in the form of hatred and judgment.  It was very sad, and all I could do was continue repeating myself that I would be happy to talk with her in person so she could learn more about ankylosing spondylitis.

Those of us struggling to live with our chronic diagnoses are so often put into positions where we are challenged for our disabilities and forced to prove how sick we are. How degrading.
Continue reading To the stranger who told me I’m not disabled

Helping Charis

Those of you who have been reading my blog, and those of you who know me personally know I’m good at sharing important, gruesome, sad, exciting, powerful pieces of my life so others’ lives may be impacted positively. You have seen that I use my voice to make a difference. You’ve witnessed as I have raised thousands of dollars for the Arthritis Foundation, as I’ve shared my story openly on my blog and in local and national news stories about healthcare.  Those of you who know me best know that I love hosting potlucks – what you may not know is that I love hosting potlucks so much because I love bringing people together who would not otherwise meet.  I love creating community, introducing strangers, being a nucleus to a gathering.

Image by Brian Baker, used with permission
Image by Brian Baker, used with permission

Continue reading Helping Charis

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a voice for many

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