How I Hokey Pokey

Feet in teal sandals pic

In my other life, I swam competitively or ran 6 miles most days.

Then, due to lupus and ankylosing spondylitis, I couldn’t breathe or walk for periods of time. Dressing myself seemed like running a marathon. So did using the restroom. I told God, at age 28, “Please take me if this is a preview of my future.”

One month I spent on the couch. I rolled off the floor and crawled down the hall to use the restroom. Every last thread of energy I used to complete the tasks involved in using the bathroom.

My future dreams included a triathlon. Not using every ounce of stamina to relieve myself.

Physicians and naturopaths tried many different approaches to treat the inflammation that ravaged my body, mind and soul.

I changed my diet as well.

After years of battling the beasts, sometimes I saw glimmers of hope. But often the darkness enveloped my life story.

Yes, I learned volumes from this journey. I’m a prayer warrior, and I learned to stop and breathe in the beauty of jasmine fragrance. I also divorced my drivenness. This go, go, go mentality of many Americans creates chaos of the soul. The drive shoots cortisol throughout our bodies, and stress pumps through our veins. And of course, that was me.

But nowadays – thanks to an injectable medication called Humira – I have part of my life back. I can sleep through the nights without waking all night long in pain. I can walk. I can dress myself. And I can breathe without having a frozen iced venti cup of water on my chest. (This works better than an ice pack, for some reason.)

IMG_1774

Nowadays, every other Tuesday I inject myself. That’s my hokey pokey. As in, I poke myself with a needle that offers me two more weeks of a semi-normal life. (Sometimes I’m still exhausted, feeling as though I’ve been drugged. But that’s another story, and this happens on the sunny days. A part of lupus.)

And yes, I am quite aware of the side effects of this TNF blocker medication. I’m willing to take the risks. Because deep down, I’m an athlete. I love the wind caressing my hair on my pink kayak. (Below: pic with Werner kayak paddle.)

That. Is. Life. I feel the gratitude engulf my soul as I paddle among the seals and salmon.

And this is a piece of my heart that you may learn from:

Don’t share about your friend who died of lupus. Please don’t dance that song in front of anyone fighting any disease.

 

Oh, and also don’t share an approach you know will fix it. Because chances are – I’ve tried it. If you absolutely must share, please ask graciously first. To offer false hope is like piercing me with a broken piece of my life story.

Parking in a handicapped space when you don’t need to? I’m going to TP your house.

Why am I sharing this story?

So ribbons of gratitude weave their way through your own body image story.  Can you breathe today? Jump in gratitude. Can you walk? Rejoice.

Dance like a diva or dude to the music of gratitude.~

 

 

 ____________

Do you have a hokey pokey body image story? Please share.

(*happy feet picture at the top shows my toes separated due to injections of cortisone from years ago. But who cares, right? 😉

The full story is in my book, Tooshie: Defeating the Body Image Bandit

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