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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!

I have a new project. Because I am crazy like that. September is CMT Awareness month and we aren't able to do the cool podcast interviews like last year :(. Too many glitches that we're still working through. So I thought I would give an insider's view of my ride, my life. A little bit, every day of September, that all together might shine a light on this CMT journey. I can guarantee some melt-downs and falls, good days and laughter.  For me, it will be a discovery too.

I realized today, as I thought about this post, that I disassociate from the symptoms a lot.  After all, how many days can I say Ouch before I sound whiny?  I get tired of revisiting the same challenges.  So I ignore them.  And today, as I tuned back into the signals that I was getting from my legs and hands, I realized that I need to pay attention again.  For those of you just finding me, I have a lot of history on the About page and in My Quiet Monsters.  I have lived with CMT my entire life.  Throughout my childhood, it was unknown (though I had symptoms.  No one could figure it out).  I was diagnosed at 13.  In my teens, it was an inconvenience, a by-the-way.  In my twenties, maybe an annoyance, but not really a big deal.  My thirties was it became serious.  Now, it's a daily dance of give-and-take, modify and create, and accept and persevere.  I wake up, manage my day, and fall asleep planning around CMT.  CMT is not just weakness in my hands and feet.  CMT is everything.

Most people have no idea.

Today, I thought this post would be boring.  I teach a kindergarten/first grade class two days a week.  I cannot possibly teach any more days.  Around 2pm, I felt pretty good.  Granted, I wake up with my pain med and my coffee.  And I rise up to the energy of the kids (and crash at home, but that's why I only work two days).  I am determined to take one pain-med a day.  Why?  I don't know . . . I'll think about that one.  So I felt pretty good.  Then I did a painting project with the kids that had a lot of clean-up.  We had an emotional end to the day- kids melting down in the last minutes of class.  That took awhile to smooth out.  And then I put away today's stuff and got ready for tomorrow.  By then it was 4:30.

Driving home, I felt the symptoms smolder in my feet and legs.  The pain stretched up my calves.  Numbness and tingling down my legs, wrapping like ribbons under my skin.  I needed to go home and put my feet up.  But I didn't.  I had agreed to help the school by volunteering at the local street fair.  We ate quickly and I took the kids to the street fair.  More walking.  And I sat a little, but stood more, and by the time we got home at 7:30, my feet were snarling-mad at me.

Uh, oh, 10:14pm now and I promised myself no technology after 10pm.  I stay up too late :).  And I teach again tomorrow.  We're having a Tea Party :)

But no gloomy energy here.  No, this is my life and I embrace it with joy and appreciation.  After all, who can complain about moments like this one two days ago?

Life is good :)

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