Category Archives: chronic pain

Patient Advocacy & Courage; Becoming a Voice For Many

Do you know how much courage it takes to tell 200 strangers it hurts to have sex?  Courage.

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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.

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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.

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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

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