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Archive for the ‘Neuropathy and Cold’ Category

Prose for This Path

January 11, 2011 by Lenka 2 Comments »

Today was another doctor appointment.  Another round of antibiotics for a cold that has settled into me for a longer stay.  And it’s been over a month since my last bout of antibiotics, so I was glad for that.  But we also talked pain medication and how winter affects me and I left the doctor’s office holding so many questions.  What do I do?

And I tumbled around answers all afternoon and evening.  I’m not very fun these days.  I’m irritable, tired, and fussy.  I’m fine, really, but I’m fraying at the seams.  I find myself losing words, obvious words like when that movie star’s name is right on the tip of your tongue, but this time the words are homework, or jacket, or laundry. I’m sleepy all day and then awake at night.  I try to limit projects.  I actually walked out of a craft store with nothing, nothing new to make.  That was huge.  I have no time.  And I know life is very demanding right now.  Ian is two.  Active, endless-energy until we melt down in wailing fits two.  Lovely two :) .  I knew this would be hard.

And I remember the words from five years ago about conserving energy and making long term decisions that will keep me healthier longer.

I wish for answers.  Someone to say, this medicine, this treatment, this course of action will make all the difference.

These degenerative conditions are so tricky.  Especially when we have bills to pay.  Meals to cook.  Houses to clean.  Life doesn’t stop for us.

And tired is finding me fast :) .  So this thinking was the inspiration for the quick poem.  About how we stand on this path and we look for advice from our doctors, our friends, our family.  But really we are standing on this path alone and we have to make the best decisions for ourselves.  That takes a heck-of-a-lot of courage.  And strength.

I’m so glad that we have each other.  We really are creating a garden online with our stories.  Reaching out and sharing what matters.  We are amazing :)

 

A Different Image

January 9, 2011 by Lenka No Comments »

Instead of chasing, I should have found an underwater picture :) .

My zero-inbox plan lasted one day.  I have 97 emails to go through from the past four days- yikes!  Clutter in every corner of the house.  We are winning the Christmas tree marathon.  Ours is standing proud, blinking colored lights in the window :) .  A lingering cold pesters me with constant headaches.  All in all, back to the routines :) .  Ian’s bedtime routine is gone, speaking of routines.  So it’s harder than ever to get to the computer to write.  But I need this creative space, even for the rough edges, especially the rough edges, because I am reminded of balance here.

On the positive side of life, I am editing Dirt, Lord of All Things Dark and Mysterious to publish indie-style.  Kindle and Pubit for Nook right now are my plans.  A friend is going through it for errors and my Mom agreed to help (yay Mom) so that’s all happening backstage.  Kids at school are practicing Peter Pan.  Another crazy escapade, but they are so excited and happy so it’s worth the effort :) .  I’m considering publishing the script indie-style for schools everywhere because it really is a fun production.

I managed to take and edit Christmas Dress photos, so those are at the end of the post.

Busy as ever.  But I must keep finding my way here.  My rock.  Last winter inspired me to start this blog and those stormy skies are overhead again.  Cold, cold, cold.  Fussy.  Does fatigue make us feel colder?  I wonder . . .

Anyway, kiddos are getting restless in the bath.  Five minutes.  Over :)

 

And the Fall

December 2, 2010 by Lenka No Comments »

After the beautiful view comes the fall, the cost of all that hard work.  A tough day.  I had to pull myself out of a tar pit to get out of bed, and all day I felt heavy and stiff.  Even my thoughts had a brittle edge.  Not fun.  One of the reasons I started this blog because I wondered if cold affected me.  Well, I don’t wonder anymore.  It’s like a curtain dropped on my shoulders.  A heavy curtain that drags at my steps.  Yikes.  Then the heating bill arrived.  And my husband says that my edge of comfort, 69, is too warm, so he dropped the thermostat a couple of degrees.  I have my Cosysoles, yay, but somehow my muscles in my back tense up from the cold, then ache from the tension, and my thoughts go irritable and impatient.  I curled up under the electric blanket for a little while.  But that doesn’t work very long with a 2 year old.

Speaking of, he’s decided that sleep is overrated so he’s trying to climb on my lap right now.  I have a few Nutcracker photos to post, then off to convince him to sleep :)

Electric blanket, hurrah.

 

Oops

November 30, 2010 by Lenka No Comments »

So just when I think that ‘normal’ is attainable and the schedule is more of a mental game than a physical challenge, I wake up.

Crash.  Paycheck.  CMT hangover.

Why, oh, why do I forget like this?  Legs ache.  Nerves tingle.  Feet sulk.  I am sunk :)

Today should be a slower day.  Gymnastics for the boy.  Dress rehearsal for the girl.  Three loads of laundry to fold.  Piece of cake :)

Oh, and it’s frosty-cold outside which does affect me.  Cold seeps into me even with the heater blasting, bringing fatigue and aches.  I feel old and I’m still young.  Yikes!

If I don’t choose to slow down, the choice will be made for me.  One way or another.  I’m listening.  Slowing down.  See?

 

Podcast! Interview with Patricia, Inventor of CosySoles

November 22, 2010 by Lenka No Comments »


Episode 30 Show notes

This is a determined podcast.  We had challenges with the snowstorm messing with our technical plans (so the recorded podcast was actually take 3 :) ) and I have a lingering cold. I even say Episode 29 instead of 30 and I forget the date in the beginning.  Oops. We almost rescheduled.  But we persisted and I enjoyed our conversation a lot.  Patricia and I started talking about CosySole slippers and handwarmers.  These innovative products allow you to heat them in the microwave and walk around the house or relax in comfort.  Her journey bringing CosySoles to the market is an amazing story of creativity and tenacity.

We then talked about family and CMT (Patricia also has CMT) and life-philosophy (of course :) ).  How has health issues both frustrated and inspired us?  How does it affect our relationships with our children?  Is one mind-set or approach better than another?  Is it better to fight symptoms or accept limitations?

Can we believe that challenges are small and make them fade?

Or do make them worse when we validate them and believe that the challenges are real?

And what influences genetic coding?  How can our beliefs, even before we were were born, influence our life path?

Like I said, a fascinating conversation!  Thank you so much, Patricia, for sharing your stories.  As I’ve said many times before, meeting people like you is the entire reason I publish these podcasts.  We are such a strong, dynamic community!  I believe in us :)

Links:

CosySole Slippers . . . first chance for holiday shopping- last year they sold out!

Video of CosySoles on the Dragon’s Den

Cosy Soles on the Dragon’s Den: Official Episode Recap

Support CMTUS!  Click here for the CosySoles link that donates of a portion of each sale to CMTUS.  CMTUS shares resources, positive living strategies, practical suggestions, and new treatment paradigms for Charcot Marie Tooth syndrome (CMT).

 

The Things I Drop

November 3, 2010 by Lenka 6 Comments »

I drop things.  Little things like pens or spoons that clatter on the counter.  Or toys.  Or X-Box controllers.

And I drop things that better not break.  Like phones.  And X-Box controllers.  And coffee mugs.

Most things can be cleaned up.  And I pay attention to the really valuable stuff.  Like my children.  I’ve never dropped them :)

I have sensory issues.  I think that I have a good grip when I don’t, or that I’m holding tight enough when I’m not.  I feel the thing, but I don’t hold it right, and I don’t even realize until it’s already falling.  Friends get frustrated sometimes.  Mostly because they don’t know.  I’ve heard, “Oh, too much coffee today, huh?”  And “butterfingers.”  And “pay attention.” (that one mostly when I was younger).

And I’ve learned to be okay with dropped things.  Except when I drop something like this

No, I didn’t drop the pumpkin.  Not really.  But it is whole and pretty three days after Halloween.  I dropped the plan to carve on Sunday.  I just couldn’t.  Hold.  It.  Together.  The plan crumbled.  And I stand in the clutter after falling.  Wondering, should I even bother picking this up and putting it back together?  Or let our homegrown pumpkin that we cared for all summer, just waiting for Halloween glory, just let this pumpkin quietly rot . . . and hope the kids don’t notice.

Hope they won’t remember.  Mama dropped the ball.

Except those are Ian’s little fingers, his shadow-hand pointing to our prize pumpkin.  The kids love the pumpkin.

I’ve had more bad days than good days these past few weeks.  Ongoing chronic health issues between doctor appointments.  Difficulty sleeping.  Added responsibilities.  All a recipe for flare ups.  My feet are crazy-roaring these days.  I’m tired all day, and then at night I zing awake.  I wondered if my restless evenings happened because I allow myself two pain medications a day.  One in the morning, when I do my chores or work in a flurry before it wears off, and another in the evening after dinner.

I found that I woke up feeling better if I took something for the pain overnight.  Even though I could sleep through the pain (most of the time), I woke up pretty miserable without overnight pain meds.  First steps hurt  a lot.  With help, I sleep better and I get a few hours in the morning before the bone-deep arthritis ache turns ugly.  And the cold is coming . . . yikes.

Regardless, my schedule means this little window between 9-11pm is golden.  Pain muted.  House quiet.  Oh, the creative ideas clamoring for attention!  I give myself curfews but I still lie in bed reading or watching mind-numbing television.

I just realized, writing this, that my schedule means that my family gets me as one relief-time wears off and before another relief-time arrives (late afternoon-evening).  Hmm . . . doesn’t sound fair to them.  Have to think about that :)

Anyway, about dropping pumpkins . . . I feel bad.  And not because I had to scale back.  Life is about compromise and process over product and all that good stuff.  But I feel bad because I really wanted to carve pumpkins.  I wanted the goopy fingers and crooked grin, the candle flame and overnight magic of Jack-O-Lanterns.  And I could say he’s a Day of the Dead pumpkin, I suppose, I could get creative.  But I’m also angry that I missed the moment.  Those lost moments get to me.  The ones dropped because I am too tired, or not strong enough.

Some days I feel like my life is Humpty Dumpty at my feet and I’ll never put it all together again.

I can’t catch everything.  Do everything.  Be everything.  No one can.  And it’s easy to blame illness and challenges.  But the reality is that we all make compromises or we end up as scary robot-people chasing after what life should be like instead of noticing here and now.

So our pumpkin may be a harvest Jack-O-Lantern.  Take a breath.  And be okay with that.  Yes, our family may have memories of Halloween without Jack, but we’ll also have memories of laughing and trick-or-treating and spending real time together.  That matters.

And when you drop lots of things like I drop lots of things, you hold onto what matters.  You pay attention.  Because dropping things isn’t as important as holding on when it really counts . . . :)

Happy Ian

I know he’s blurry, but he’s happy . . . and he rarely stops moving these days :)

Autumn Leaves

Leaves changing in our backyard.

We are the leaves.  We are the tree.  We change.  We stay the same.

Happy Autumn!

 

Podcast! Tricks and Treats. Happy Halloween! Fable 3 and a Quick Look at the Nook Color E-reader

October 31, 2010 by Lenka 2 Comments »


Episode 29 Show notes

Happy Halloween Podcast!  Yep, I took a few minute to talk about the tricks and treats of living with a disability.

And cool products!  CosySole Slippers are awesome.

And Nook Color is coming soon!

Also, I’m playing Fable 3!

Links:

CosySoles Slippers and Handwarmers

Nook in Color

 

CMT Awareness Week Wrap-Up

September 26, 2010 by Lenka No Comments »

What a week.  Highs and lows.  I started so strong with reaching out to our community.  The conversations with my new friends gave me such inspiration.  I had big plans for follow-up posts.

Then, reality.  It was a busy weekend.  I did push pretty hard.  And got sick.  Really sick.  I’m finally getting relief after a couple of days with antibiotics.  One day I was fine, the next slammed-down with bronchitis and sinus infection.  I feel so fragile sometimes.  Frustrating.  The sort-of nice thing about it was I shelved everything for a few days.  I even took a day off from teaching.  Really slowed down.

Of course, as I feel better, the postponement only feels bigger.  More to get to now than ever.  All in good time.

The big message that sank in this week for me was how we write the CMT story.  I forget what is out there as facts for the public.  And I found CMT described as a hands and feet challenge.  That it affects mobility, dexterity, and may lead to wheelchair-use.

And that sounds small.  How can I say that?

Because CMT is so much more than feet and hands.  I’m not scared of wheelchairs anymore.  What scares me with CMT is bigger than mobility.

CMT is a whole-body experience.  Fatigue, emotional stability, general health are all affected by this condition.  The nerves may fray more quickly (fray is my word- in reality the insulation starts breaking down) around the hands and feet, but it affects nerves everywhere.  Affects more than nerves.  It affects muscles, joints, tendons, circulation.

Now, I don’t want to be alarming.  I would just love if we could get the mainstream attention, the media blast that would propel research forward even faster.

I am a disability advocate.  And being that, I would not change my abilities.  Really.  I am fine with my life.  But the pain.  The cost for my family as I need more and more time for recovery.  The uncertain future.  Those are the big problems with CMT.  This is no small, rare disease.  This is real, powerful, and important.  I send my message to the universal energies.  Notice us.  Let us change the story.

Thanks for the well-wishes this week!  All strength to my community :)

Butterfly

Anika Holds a Butterfly

At school we raised caterpillars.  Last week we did a big release of the butterflies.  Anika was lucky enough to have one stretch its wings on her hands.  So much work, that transformation.  Such magic!

 

Living with CMT, Day 13,903

July 28, 2010 by Lenka 4 Comments »

I hope this plane will find clear skies.  I’ve been in emotional turbulence.  False expectations, I suppose.  Summer is supposed to be my good season.  My break from the constant pain, fatigue, and general malaise that haunts me.  Not this summer.  Could be the baby.  Almost two years old baby.  And when Anika was this age, I had my big fall-apart.

Then again, it could be the medication-adjustments.  Summer is the season for trying new things.  And the fatigue medication works okay, but it spins me out, too.  I didn’t take any today and felt a lot better than the past week.  And I dropped the pain-meds thinking I wouldn’t need them.  Wrong there.  The arthritis in my feet has four years now of aggravation.  The bones are not happy.  And they let me know big time when I quit medication. So I’m taking a low dose of the pain meds and I quit the fatigue meds.

Not to mention that I am on my feet a lot.  Even in summer.  Chores and projects and keeping up with the toddler.  These are not laid-back summer haze-days.

And again, it could just be me.  :)

Degenerative symptoms galore.  I worry about the mad-tumble of troubles, like when Anika was a toddler.  Back then it was the arthritis diagnosis and the weakness/numbness in my hands.  I worry about what may be next.

Then I breathe.  Worry won’t change the path around the corner.  I slow down.  Listen to my girl.  Watch her dance.  Read my boy stories.  And try to stay here now instead of worrying about the future.  We could all worry.

I’ve also been contending with a new frustration.  Anger.  It could be a side effect of the medications, but I’ve been bee-spitting mad.  The bees whirl around in me with stirring whirring fury.  Why is everything such a struggle?

I’m not angry at anyone.  Not at God.  Not at myself.  Just a decentralized anger.  Why can’t I fix this?  I’m clever and creative.  Why don’t I have a solution or two?  Why is waking up in the morning like a zombie climbing from the mud?  Why the 13 thousand days of negotiation and compromise and frustration?

I found articles online that had clinical answers about disability and anger.  Management issues.  A stage in greiving.

And maybe that’s part of the degenerative piece, the constant losses.  So the anger resurfaces.  But I feel an intense and unfamiliar resentment this time.  I want to be better.  Not better in my health, necessarily.  But a better mom.  A better writer.  A better teacher.  A better house-cleaner :) .  I see where I could go, who I could be, if only I had the energy.

Emotional turbulence.  A tidal wave.  And I’ll be fine.  I’ve been here before and I talk myself into a better place.  I figure out new solutions.  I build.  It’s part of the journey.  I just wanted to share the experience from a real perspective, not a clinical perspective.  I’ve said it before and I’ll say it again, the emotions of this journey are universal.  Our challenges may be unique.  And that may intensify our emotions.  But our experience is the human experience.  We can all grow and learn from each other.  Thanks for letting me vent :)

Tomorrow I wake up sunshine :)

 

Living with CMT, Day 13,846

June 1, 2010 by Lenka 3 Comments »

Got a shout out over at ChronicBabe today in the blog carnival, hurrah!  Other great links to articles about favorite self-care tools and techniques.  Cool stuff.

For me, I found a metaphor today.

Some days the CMT is a poodle on a leash, a small thing really.  I can feel it tugging at my life and I may look and say I see you, what a good little thing you are in the hope that it will stay quiet and docile.

Then some days the CMT is a great dane.  Big, heavy, large paws padding alongside me and I just hope it doesn’t decide to lie down and take a nap because there is no way I can drag that dog with me.  I slow down.  Pay attention.  Ask what it needs.

And then . . . then, some days the CMT is a wolf.  Fierce.  Wild.  I can barely understand it at all.  Scary.  And I stop.  Move slow.  Ask it to be kind.  Hope for the best.  And let it take the lead.  I feel small and fragile beside its power.

Better get myself to bed.  Or I’ll wake up with the wolf tomorrow.  Today was a busy, great-dane sort of day.