Tag Archives: Chronic disease

#sickbody, Advocacy, ankylosing spondylitis, chronic disease, chronic pain, disability, health, Health Insurance, Inequality, Invisible disease, Patient Advocacy, sickness, spondyloarthritis, Survivor, Uncategorized

The Work of a Patient

November 24, 2015 BeingCharis 11 Comments

I don’t get paid for this but it’s my job.

Ironically, I pay others for the work I do. You may need to read that twice to let it sink in. I pay health insurance companies, doctors, and pharmacists to do a job that I actually do because they don’t – or can’t. Though it’s not on my resume, I’m an unpaid Patient. I make the phone calls when I catch the mistakes because no one else has the time. I make the phone calls when my doctor doesn’t know what my other doctor said, even though they share a computer system. I call to make sure my prescription is filled on time. I call to make sure my insurance company will cover a service because it’s not clearly stated in my plan information. I call to challenge billing errors and then I call to follow up at least three times before it’s settled. Continue reading The Work of a Patient →

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

When you see me I’m acting

October 3, 2015 BeingCharis 13 Comments

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 →

#sickbody, Advocacy, ankylosing spondylitis, Charis, chronic disease, disability, health, Invisible disease, SSDI

To the stranger who told me I’m not disabled

September 26, 2015 BeingCharis 22 Comments

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

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 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 →

#sickbody, ankylosing spondylitis, Charis, chronic disease, chronic pain, disability, health

Helping Charis

September 22, 2015 BeingCharis 2 Comments

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.