Tag Archives: But you don’t look sick

Holding Hands With the Reaper

People tell me I should smile more.

But look inside me.

My toes. My toes point soundly forward in shoes that should have my prescription orthotics in them.  I choose not to because I’m 28 and I’m wearing heels as long as I can, so I can feel the “normal” parts of my 20s – and choose pain that I cause myself, thank you very much. I want reminders in 5 years that I could pass as someone my age.  Right now my toes are sound.  I trust my toes, most of the time.

My plantar fascias are aching. They threaten to cramp most nights as I lie in bed, still awake after hours of restlessness.  They ache and throb as if my heart itself has moved to the bottom of my feet. I ask a lot of my feet. These feet hold me in place as I struggle against the rest of me to cook, bathe, check the mail, pedal my bike, press the sewing machine pedal, and occasionally walk in high fashion runway shows.

Though I’m largely unaware of the pain until I pop my ankles, they remain stiff all the time. I rotate my feet clockwise and counterclockwise, back and forth in quick rhythm, in attempt to loosen my ankles and rice krispies happen.  You know, snap, crackle, and pop. Rice Krispies don’t hurt, but my joints do. How can these sounds accompany so much hidden pain that suddenly takes the red carpet?

My knees are chronically, invisibly enlarged from years of soccer and running long before I knew why my injuries were so intense, why they didn’t heal like they should. My quads and hamstrings play injury-tennis, back and forth. The pain is in your court now, left hammie. My weakened muscles are constantly overcompensating for what my body can’t naturally do: fight inflammation, toxins created by overuse, expectant injury, and scarred tissues and bone spurs.  Instead, my body fights my joints as if they are alien matter. Continue reading Holding Hands With the Reaper

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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.

Continue reading Patient Advocacy & Courage; Becoming a Voice For Many

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 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