Welcome! Lenkaland shares my adventures. I create photographs that document adventures. I am one of the bestselling authors of the Forest Fairy Crafts books. I advocate for disabled rights. I appreciate you visiting. Enjoy your stay :)

The Maybe Scary Maybe

So one morning, my first steps felt different. Not the usual aches, or the tight tendons that need stretching before my heels touch the ground, not the wobbly balance that evens out within a few minutes. Not even the left hip that’s been flaring up for the past years.

No, the other hip this time. Sore, then “odd”, a little loose is the only way I can describe it. Like it was irritated, or strained, or…?

What happened? Was I wearing different shoes? Was it a misstep? Or is it another degenerative symptom to add to a growing list of degenerative symptoms?

Will it go away? Is it an injury? A strain? A cumulative collapse of a joint that has been twisting wrong or bearing wrong or…?

The questions jumble up. When living with an incurable, degenerative disease, the questions are inevitable. My genes, dealing with a slight error in coding, affect my nerves which in turn affect muscles. There is no treatment or cure. Doctors can only mitigate symptoms of growing challenges with bracing, physical therapy, or surgery.

My genes have a slight alteration that causes nerves to struggle. At one level, this means they send signals slower, or stop sending signals at all. The muscles then get confused, weaken. Which causes joints to not have proper support. And, when primary muscles weaken, secondary muscles step up. They probably aren’t meant to take the primary job, so they pull joints in unintended ways. Which leads to strain. Osteoarthritis. Pain. 

All of that begins with a big Maybe. The traditional route for our bodies is an injury/healing cycle, against a backdrop of aging. That moment when our eyes begin to struggle? Maybe we need glasses. Or that hike seems extra-long, that’s a moment of Maybe. Maybe we need a different hike. 

With chronic illness, maybe happens on the daily. And maybe doesn't follow a linear path, such as maybe I hurt myself but I’ll feel better in a few days. Or maybe I’m tired so I should take a nap. Or maybe I slept wrong but tomorrow will feel better.  

For me, maybe it’s an injury. Or maybe it’s forever. What if this is forever? Maybe I should call a doctor… or maybe the doctor can’t do anything anyway. Maybe it’s a big deal. Maybe it will go away in a few days. Maybe it needs exercise. Or rest. Or ice. Or heat. Maybe I should call a doctor. Maybe it needs surgery. Or maybe I should just get used to it…

And the next day, I might wake up feeling a bit better. So the big maybe becomes a little maybe. See, it’s fine. Nothing to see (or feel) here. Definitely not a scary maybe. Until I wake up the next day and my hip is wonky again. Here go all of the maybes. All over again.

The many maybes become exhausting. Until a moment of clarity when I realize that I really don’t have control over the maybes at all. All that I can control is, what are the best choices moving forward? The maybes can be overwhelming and scary. They create a maze where anyone can become hopelessly lost.

So holding a compass is the only way to navigate through them all. Remembering what’s true. Yes, maybe this will last, maybe this will be difficult, maybe this will rock the world. But I know that my kids need me. I know that the sun will shine and summer will come. I know that certain truths outlast maybes.

No maybe about it. 

update: As of yesterday, it was feeling better so I decided the hip was injured and recovered (yay!). Then today I woke up with it right back to being fussy. Grrr.

So maybe the colder temperatures? What has been my activity level? Maybe more rest? Maybe more movement? Sleeping patterns? Stress? Maybe it’s stress… And thus I fall into the maze of maybes all over again.

For fun, here's Chewie considering that maybe he can get that blue ball in the hot tub, maybe that layer of snow is solid. Don't go there, Chewie!

Lhasa Apso Considers Frozen Hot Tub

Which is a good lesson. Maybe stay away from the maybes :)

Road Trip to Death Valley

Road Trip to Death Valley

Parent's Guide to Bedtime Storytelling, Part 1

Parent's Guide to Bedtime Storytelling, Part 1