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Hello

Welcome! Lenkaland shares my adventures in creative photography, raising kind children, writing, living with chronic illness, raising a daughter with dyslexia, and swimming with mermaids. Hope you have a nice stay!

Days on crutches: 56Time since injury: 8 weeks Diagnosis: Bone contusion, sprained ankle Outlook: unknown, no time-frame for healing, driving, or ditching the crutches (feels like forever) Treatment: Stay off of my foot (ha), ice and elevate three times daily, hope

Epic melt-downs sneak up on me. They wipe me out like a horrible tidal wave that dumps me, a hollow shell, on the shore. They suck. And I don't usually talk that way, but this month I give myself permission to share the dark stretches of this CMT path.

I had my second appointment for physical therapy yesterday. And they people working with me are kind and sympathetic. They listen. They have ideas. They give me a smile that says, "We'll see," when I tell them my tendons are stretched to the limit. But two things happened that spun me out.

First, I had to notice myself. I create a fog most of time time. In the fog, I am fine. Sure, I have accommodations. Sure, I struggle. But I'm fine. Right?

Not so much.

That was the other spin-out. I am there for help with my ankle. And the ankle needs help. But along the way, they suggest this stretch or that exercise. And for many, I had to say, "Oh, I know, but that one aggravates the arthritis in my feet," or, "Sounds great, but that bothers (hands or hip or knees or... insert just about anything here)". Not fun. At all.

They were kind and sympathetic, like I said before. They got a rubber band so I can exercise my fingers and maybe help with the Trigger Fingers that are disrupting my sleep. I wish I could visit them yearly, or more often, so they could give me exercises to maintain whatever strength I have left. Then another exercise made my hip ache, so I shared that story about those troubles.

"Is it sore here?" she asked, touching her thigh right below the hip-bone.

"Yes. Ow. Especially since I have to use this leg with crutches. I don't get to rest the hip at all anymore."

And a look I recognize flickered across her face, just for a moment. A look of concern, of almost-sadness. She explained that the tendon gets irritated when the hip is inflamed. If I don't take care, it could cause even more problems. So she gave me ideas, like rolling a rolling pin gently along the sore tendon to help release the pressure.

I do my best, day to day, not to notice these things. I do my best to see past the numb fingers and the aching hip and constant fatigue. I rise up. And that session made me see how far I am from where is should be, physically, for my age. I did these gentle exercises and even those felt demanding. They kept correcting my posture, and I had to say that my tight tendons pulled me off balance. And my balance is uneven anyway. It is exhausting, explaining my weakness, my quirks, my challenges. Completely, darkly exhausting.

The session held up a mirror, like the magic mirror, except this one showed me that I am broken. Beyond my ankle. Broken with long stories. Broken with gradual crumbling. That should be enough for anyone. Then stress at home collided with my tough physical wake-up call.

Add to it that my husband has been out of work for a year and a half. He is in survival-mode as he applies for job after job and faces rejection after rejection. I am the primary breadwinner in our family. Even with a damaged ankle. Then my girl needs extra academic support at school. So much on my plate. Too much. And my family is incredibly supportive, but we all forget how much energy an injury saps away. Even my daughter said, "I can't remember you without crutches anymore. It like you have always had them." They forget. And asking for help is so difficult.

I fall apart. This path is tough. The ground gets swampy. The sunshine seems way off in the distance. Sometimes I just want to lie down and sleep for a hundred years like Sleeping Beauty. I get weary.

And it is hard for me to write this. I want to weave stories of sunshine and warmth. I want to be the warrior. But CMT chips away at me. CMT needs to be cured. I have not given the quest for a cure that much thought. CMT is just my reality. And I have heard rumors of cures or treatments since I was a kid. It always seems to be five years in the future. And I hope one of the rumors come true. Because, honestly, there is no treatment for CMT. We react and care for symptoms, but there is not a singe thing that can help with root causes of these many, many symptoms. Oh, I hope that changes. Soon. I need it.

Meanwhile, I got to bed early. Threw myself into my teaching day. Moved forward, ever forward. Because the path bends quickly, and opens to lovely valleys with smiling children and wildflowers. Life changes quickly. I must trust.

Life can be bitter. And ever-so-sweet.

20120913-230534.jpg As I was in full scale melt-down (crying), Ian handed me his Iron Man. "Here, Mom, my guy will help you feel better. He helps me when I am sad."

Yes, he helped me feel better. Little gestures make a big difference.

20120913-230605.jpg I surprised Anika by pre-ordering the new Justin Bieber book and it arrived in the mail today. She was so happy! My goal for her, on her path with dyslexia, is to see books with joy and delight (instead of work and frustration). Mission accomplished :)

Wishing you joy :)

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