Lenkaland

I get this question a lot, especially around the holidays.  I’ve made seventeen fairies with my students (like the photograph) and ten fairy kits and eight sewn ornaments and now I’m working on eight more angels and three custom fairies.  How is it possible?

• It isn’t.  Not every day.  I have break-downs and melt-downs and it’s a constant balancing act.  I hit the wall and get frustrated, then sort myself out and try with a new plan.
• I am lucky.  This may sound strange, since this is a list of compensation strategies.  But my nerve conduction test showed that I have good nerves alongside the damaged nerves.  So even though I am weak and prone to injury, I still have my fine motor skills (mostly, the little faces are getting more frustrating)
• I am living short-term.  I cannot do this every year.  Probably not even next year.  I don’t know what I will change, but I know I must change.  This pace is not sustainable.
• Lots of coffee.
• Braces for both hands.  I switch back and forth between my right and left hand braces (feels too strange to use both at once ).  They are carpal-tunnel braces available at any drugstore.  My custom brace broke (too much activity, I suppose
• I get defiant.  Oh, fingers going numb, well then, I’ll make four more crafts, just to show who is in charge here.  I do not recommend this strategy.  I know who is charge long-term, and it isn’t me
• I take more Aleve.
• I have help.  At school, my teacher-friends helped children sew the hats.  Other friends and family help entertain my kids.  They all support me 100% (though many say that I shouldn’t do so much).
• I live with the consequences.  I hold the pain and numbness with the understanding that I earned it.
• I let other things go.  We’re eating simple, and the piles are piling up.  But I’ll get to them.  One day
• I switch between activities.  A lot.  I will sew a little, then type, then play with the kids, then sew a little more . . . you get the idea.  My hand therapist said that the repetitive motion is the biggest danger.  So skipping from activity to activity is actually helping strengthen different muscle groups, right?  Or is it just causing more fatigue in different areas?
• I have an end-date.  This week, it’s Friday.  The Fairy Shop will close its doors.  School will have Winter Break.  And I will turn my attention to my family again.  So I hope those days of strict no-crafting will allow for healing.
• I love what I do.  Really, this is what makes it all possible.  I love each and every one of these little treasures.  And I feel so fortunate that I get to bring this magic into the world.  That magic is bigger than the pain and numbness and fatigue.  That’s what drives me, inspires me, motivates me.  I appreciate the fact that I can make them now, so I will.

Off to make more magic

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Why is it that when I hurt, I get angry?  Snarling at the world, dark skies angry.  I think because it triggers all that fear about future limitations, as well as triggering all the frustration with my current limitations.  I bang at the walls that seem to be closing in on me.

I can’t type much tonight.  I have to rest my hand.  It is really really tough for me to rest my hands.  I do not like being still on a regular day, but today I was going to prep angels to sew with Firefly (forget that plan).  I hope to make Christmas Fairies with my Dragonfly class later in the week.  I have ornaments to make.  Craft kits to assemble.  I do not have room for pain.

Pain makes it’s own room.  Settle in for awhile.  Last time this lasted a day or two.  I was good about the resting.  This time hurts more.  It keeps tweaking at me.  Notice, notice, notice.

I notice.

I’m angry.

Deep breaths.

We had a great Saint Mikulas celebration tonight.  He knocked on the windows and left treats for the kids.  A candle for me.

Off to rest these hands.

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My friends can guess this story already by looking at the stairway. The picture says a thousand words

Now, the moment began, not at the top to these stairs, but much earlier in the day. Actually, last night. Ian has an ear infection with a fever so he didn’t sleep well and I gave him medicine at 1:30am. Then up at 6:30am to teach. Rushing home as soon as I could to give him comforting. And I was the empty shell on the shore, tired beyond tired.

This is Nutcracker weekend, so I got Anika dinner and dressed in her mouse costume. We live across the street and parking is rough with the show so I walked the half-block, then across the parking lot. And then. Then the stairs. Oh, and Ian couldn’t stand me leaving, so he tagged along. Not feeling well but determined not to be left behind. The dressing rooms were down these stairs, down the hall, down another few stairs . . .

I just couldn’t muster the energy. We went into the theater lobby with the bustle of pre-show organizing. We checked in with her dance teacher. “They go around and down to the dressing rooms,” she said, already turning her attention.

I took a quick breath. Be brave. Be strong. Because in this moment, it’s easiest to say thank you. And walk the stairs. And deal with the fallout. Instead of calling attention to myself and my story. She barely knows me. “Actually,” I said. “Is there anyone that could walk her down? A group of mice she can join?”

She glanced at me, that glance that feels like it measures me against my words. Wonders how I could be so lazy (my interpretation, I guess).

I stammered, because I do that when I need clear words the most. “I just, it’s hard for me-”

“We don’t have any runners and-”. She still had that quizzical gaze, which I felt as “really?”

“Nevermind,” I said. “I bet one of her friends will be here soon.”

And that was a solution. Anika walked down with a friend. Luckily she’s very independent. And she knows her mom.

Ian and I trudged on home. I tried to rest. I walked down the stairs to pick Anika up, after all.

But the hard place was the moment of speaking needs vs. staying quiet. There is no winning answer. I speak up and I feel guilty. Or I stay quiet and I ache. Especially when challenges are not obvious, speaking up makes waves in what seems to be smooth water. I like to be smooth water. But each chance that I have to make waves is a chance to educate, and to take care of myself. And that’s important modeling for my kids, too. To see that we can be true to ourselves and help each other out along the way.

We all have our stairways. But maybe we don’t have to climb ever single stair alone. Maybe we can skip a few .

PS My feet and legs are still mad mad mad at me … Even with my brave intentions . Oh well, I tried

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I am usually a holiday girl. I bought a tree with my allowance when I was a kid to keep in my room. Five years ago, I hung two strings of lights along the gutters all by myself. Climbing that ladder twenty times was no small feat. I even love wrapping presents. I used to wrap them for my entire family. I decorated and baked and crafted and bought Christmas music.

This year is different. This year, I dug in my heels even against Thanksgiving. This year, the holidays don’t sound sparkly and fun. They sound like work.

It’s the same thing that happened to traveling earlier. I’m sure it’s not just me. I mean, the rest of the year is challenging enough. We’re managing our families, finances, symptoms, lives. And now, just when that was overwhelming enough, have more! Gifts, decorations, events. Evening activities. Traveling. Lots and lots of expectations.

And I see, all over again, how it’s easier to say ‘yes’ and deal the with consequences, instead of saying ‘no’ and explaining why. Especially with invisible challenges, it’s so hard to set healthy limits. Especially when the limits change day to day.

So my goal this week is to get another podcast recorded. I miss our community. I’m trying to revive my frozen holiday spirit. I love this time of year. This apathy isn’t me at all.

I am searching for solutions. I have a few ideas. I am closing orders of custom fairies on December 3. Hard to say no, but I want my family time, too. I will also not craft a thousand gifts. This one is hard for me. But I was good- I bought a few things on Etsy that I could have made myself. Little steps . And … I don’t know yet. I’m trying to think of more.

I’ll let you know as I discover them. I need to take care of myself, too. Oh, I’m trying to buy local and crafty (etsy) so I won’t be walking through big stores.

Small choices that will hopefully add up to magic

I miss the magic

After all, how could I possibly disappoint her? She’s all excited for her Nutcracker show this week. Photos of that adventure tomorrow.

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If I am a house, I have a hundred rooms.  Each room is wired for lovely lighting.  And with the light, the room works.  Everything inside the room is useful and bright.  Ready for action.

My house is tidy.  My house is strong.

Except.  My wiring is muddled.  The wires that bring light are fragile.  They get mixed signals so they weaken.  Rooms get dim.  Everything in that room gets covered in cobwebs.  But the room is still there, and, with effort, can be useful.

Those rooms are not the problem.  Not really.

The problem rooms have no light at all.  The wires are cold and quiet.  No light shines.  Blackness fills these rooms.  And cobwebs choke the corners.  Everything in those rooms crumbles.

I cannot use lanterns to reach these rooms.  The doors are locked and barred.  Dark seeps through the cracks, pulling at hallways.  These rooms are gone.

And I need them.

I hear a lot, “Oh, weakness?  You should exercise.”

But the problem isn’t the lights.  It’s the wires connecting the lights.  If communication gets cut-off, all the exercise in the world will not touch that light. I can work on this house every hour of the day and it won’t matter.

Because my house is haunted.  Doors slam shut.  Lights flicker on and off.   I think I know this house, but the house changes.  Every day.  Over many days.

Still.  I make the most of my time here.  Though it’s haunted, and broken, and tired, it’s my house.

And love shines even with damaged wiring

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Always something

I visited the neurologist yesterday craft a winter-plan.  Winters are crazy-challenging for me.  ”Why haven’t you moved to Palm Springs, yet?” the receptionist teased me.  I am old before I’m forty .

Anyway, given our finances and the fact that I like this area, we aren’t moving just yet.  We are so underwater on our house (owing more than it’s worth) that it will be a long while before we can leave.  We’re the generation that bought in the boom and inherited the bust.  Then lost our jobs.

But we’re holding on.  That’s enough for now.

And I’m paying a ton of money each month for insurance, so I figure I should use it.  He did the basic tests- reflexes (none) and grip strength and resistance measurements.  Then he paid attention to my knee.  ”Does this hurt?”

A little.

“Hmm.  Well, it shouldn’t really.  What about-” He pushed my leg gently while holding my knee and a tweak of pain yanked at my muscles.  ”Ow!” I said in surprise.

“Not good,” he said. “That shouldn’t hurt.  Sorry about that.”

“It’s okay,” I said because it wasn’t that big of a deal.  ”What does it mean?”

“I’m worried that you may be damaging the cartilage in your knee.  The muscles aren’t strong enough.  We need to work on exercises.”

He suggested a few basic strength-building exercises.  And we chose a new medicine to try for the arthritis.  And I walked away, again holding this story that I need to weave into my days.  Because it doesn’t seem like that big of a deal.  But it could be a huge deal.  Strange how my stories change.  And I get used to an idea.  And when new information surfaces, when something like this happens, my whole world rocks on its foundation for awhile.

Because this time, I was okay with dealing with mess in my ankles and feet.  I’m even wearing the braces more.  I accept the decline from my shins down.  Same with my wrists and hands.  They are are fragile and fussy and I know how to care for them (mostly).

But not above that.  Not knees and elbows.  Not shoulders and hips.  Though I should know better.  Really.  Still, not fun to think about.

I’m no different really than a week ago (or am I?).  Just awareness and caution.  That’s the tricky part about degenerative conditions, though, because it can change that quickly.  And it can be a really big deal.

Hopefully that’s the most I need to worry for awhile.  :)

Because exercise is a lovely idea.  But if the nerves are fraying, exercise won’t accomplish much.  I have a story for that.  Tomorrow.  :)

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Fall break meant no school or work for me this week.  Late nights, late sleepy mornings, and a big slowing down.  Even thinking about going on a trip was exhausting, so we stayed home (except for our day-trip to the pumpkin farm).  I needed the time.  Recharging.  The sun shone those golden autumn afternoons.  My energy returned.  My ideas returned.

Energy is worth more than gold.  Really.  I could have a million dollars in the bank (I wish!) and it would be useless if I couldn’t rustle up the energy to enjoy the day.  So I don’t take a single day for granted.  Or a creative project.  Especially since I fell into a creative hole in early October when the ideas turned dull.  No, this week, plans sparkled.

I sewed this skirt for Anika.  Sewing works well for me because the fine motor isn’t too demanding.  I’ve made enough skirts to create my own patterns.  This time around, I took photos to try and remember the process (because I always forget and start each one from scratch ).  I want to make a tutorial for Forest Fairy Crafts so I needed a photo of her wearing the skirt.  The skirt has a print with black branches and owls that have white eyes.

Ian insisted on being in the photo.  He said that he didn’t have a grumpy face.  So we showed him the image on the back of the camera and he brought out his charming “cheese face.”

So lucky to spend my time with them.  In that way, I have the gift of slowing down.  Especially now that we’re broke.  We spend a lot of time at home.  Playing games.  Hanging out.  Being together.  Nice.

Because . . . Have I mentioned that she is growing waaay too fast?  She’s a little lady!

Then we had to take the skirt for a spin, because the best skirts must twirl.  And twirl.

Lovely.

I wrote the tutorial for this skirt!  Click here. Enjoy!

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Episode 35 Show Notes

I reflect on CMT Awareness month and how I have more questions than ever about an ever-changing disorder.

I saw the Dolphin Tale movie with Anika and I share thoughts abut our reactions.

Then, the iPhone 4S for the disability community.  How well can it correct my many typos?  How useful is Siri, really?  And can a smart-phone make my life better, easier, healthier, and more connected?

Is that too much to ask?

Enjoy!

Oh, and an awesome poem by Cristal!  Mutants of the world, unite

My Dolphin Tale Post

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Anika and I went to the movies today.  Hurrah!  That was a treat in itself.  I heard that the dolphin movie was worth seeing.  And I expected messages of injury and recovery and people helping.  But I was surprised by the disability stories.  Rewirting the disability story from a tragic, loss-focused sadness to a chance to transform.  Change.

I knew Winter’s story from my teaching.  We’ve read Winter’s Tail: How One Little Dolphin Learned to Swim Again to our students.  I knew that she overcame amazing odds.  And that people went to incredible lengths to help her.

But they wove a human story alongside her story in the movie.  As her human friends saw how she rejected attempts to help her, they saw their how their own pride held them back instead of helping them move forward.  I thought about myself, and how I resist my own braces.  Saying I don’t really need them.  I’m fine.  But perhaps I am causing damage down the road by overworking muscles.

There were some great lines and I don’t want to give anything away just yet since the movie is new in the theaters.  Maybe when it’s out on video I’ll reflect again with more details.  For now, I was surprised by my own reactions.  The movie-makers wanted to trigger emotions.  Of course.  But I also felt that this movie spoke to me.

Just this morning, I dreamed that, one day, characters with disabilities would have leading roles in the shows my daughter watches (kid sitcoms) or in movies, or anywhere.  And not as a passing storyline where they say, “Oh, gosh, what a terrible diagnosis,” and then continue on just like normal after a few token accommodations.  And not as a sad, inspirational study of suffering.  The reality.  Of a whole life even with damages.

So the thing that I liked was that this movie shared an attitude of embracing disabilities.  Celebrating disabilities.  And, yes, it was also about overcoming challenges and striving towards normal (which is not my belief at all.  I want to celebrate limitations).  And there were plenty of cliches to go around.

Still.  Good messages too.  The supporting roles learned that hiding from the world was unnecessary, that their attempts to protect their family and friends from the truth of their limitations only hurt more than getting out there on their own terms.

There was also a big window into the stories we are creating with the war.  The disability community is growing every day as veterans return forever-changed.  I hope they find sites like mine.  I hope we can create a chance to grow and discover.  I know, trust me, I know the depression and sadness.  But what a transformative idea.  To be made greater.  Rather than smaller.

We all need help sometimes.  And that’s fine.

Now I have a new dream.  I want to visit Winter.  :)

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I forgot the last day of September.  I woke up on October first thinking, how did I manage that?  

I know how.  Friday was wild-busy.  I was at school until 5:30pm.  The shin splints fussed all day long, making me snippy.  I was tired and wired all at the same time.  I got myself sitting down with ice on my legs and forgot about a lot of things.

Saturday was my crash with an all-day headache.  I didn’t worry about the breathing thing because that headache didn’t go away after a few hours.  No, that headache settled in for a long stay.  Today was still a recovery day.  I have got to figure out how to pace myself through the week.  Got to.

The shin splints have thankfully faded.  They lurk- I can feel them slightly, especially if I go to a store, but they’re mostly quiet again.  Nothing like adding more pain to make you grateful for the old pain levels

Anyway, I went back to my long counting.  Day 1 was the day I was born.  I have never known life without CMT.  I wasn’t diagnosed, but I took longer than my peers to sit up, crawl, and walk.  So, over 14,000 days of this story.  Being different.

Quite an adventure

I did make witches this week!  I took them to our local store, Make Local Habit.

I’ve also posted a custom witch on our etsy shop.  I will only be making one or two more for the season.

And I finished my zombie.  I love her.  Pictures tomorrow.  She’s all ragged and imperfect.  Like me

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