Lenkaland

I am inspired by a group of us women with CMT having conversations on Facebook and on our blogs. It is so nice to connect with others who understand the stories, who share similar experiences and challenges. I love the Internet!

I am feeling much better- much better is still far from all-the-way better. I got stronger anti-inflammatory medicine this week that dulls the hip-pain. So I am not in the red-zone of daily pain. Still yellow-zone, though. Hopefully soon I’ll get back to green .

May is so intense. I have a big writing/crafting project due at the end of the month. So every spare moment is devoured by trying to meet a massive goal that may not be attainable. In the middle of it all is this drama with my hip and end-of-the school year teaching. I take deep breaths but then I panic again . The Crash is my daily life these days and I have to push through even when I am dragging.

My pretty words about dancing with limitations and not ‘overcoming’ challenges do not match my path this month. I am push, push, push this month. I have to overcome the challenges of CMT. I am chasing a dream. I have said before that I hope to find Acceptance one day. This is not the day. I ‘own’ my CMT, for sure, and I often accommodate for myself. But I go between acceptance and defiance. This month I defy. And I know I will pay later. My hands are crazy-tingly. I wear a brace on one or the other hand every day. Last night my hand cramped so my fingers curled and I had to use the other hand to straighten them out again (wearing the brace on that hand now). I’ve never had that happen before. Yet, I still have big plans for today.

I have a deadline. A couple more weeks. Then I’ll slow down and heal. Hopefully the CMT gives me that chance. For now, I am grateful for the skills I have. I am making fairies. And that makes me happy.

Aother CMT myth (in my experience) is that CMT is a slow degeneration of nerves. I assumed, growing up, that meant one day was very like another with skills fading away. Instead, I have good days and bad days and bad-bad days. I was drawing at school on the chalkboard and a student asked if I could draw a fairy. “Sure,” I said, “If my hand cooperates.” *I share CMT stories with them in the hopes that they learn disability is difference, not less-than.

I find that my skills fluctuate a lot. From day to day or even from hour to hour. Sometimes, when doing fine motor tasks, I can make steady, even lines. Other days I struggle to control the pen for the simplest lines. Part of it is muscle-fatigue, but another part is a mystery to me. The hardest task for me is drawing the fairy-faces on beads. If you have followed me over the years, you see them getting more and more simplistic. I love the simple faces, but even those can be frustrating. I am so grateful when my hands cooperate and they turn out well.

I suppose I feel the race. I am trying to outrun my deteriorating nerves. That’s why this dream matters so much to me. I don’t know how much longer I will be able to make these. And it breaks my heart. Yet, I also appreciate each and every one. They are a celebration of today.

A good day. I hope

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I need to set out another teacup at my Mad Tea Party. I heard bad news in the doctor office on Monday. This pain in my hip that’s been derailing me for the past six weeks is ‘mild arthritis’ causing major inflammation. Sure doesn’t feel mild. So I got medicine and I am supposed to rest. Ha!

So I am back to adjusting my world. My hope is that once I get this flare up calmed-down, I can go back to my old lifestyle. I will pay more attention to little twinges in my hip so I slow down faster. That sounded funny- slow down faster . But react quicker instead of thinking it will heal up on its own. A few more weeks of crazy, then summer when I can really prioritize getting my health put back together.

Yesterday was the pit. I can talk positive, but I have mental-crashes too. Yesterday was my day to feel dark and lost. Frustrated, angry, and beat-down. And the pain spiked through the roof. My hopes that it was fixable were dashed, so my mental strength collapsed and all those worries and fears smashed into me.

I had a few break-downs and melt-downs. Let a couple of deadlines slip. Then got myself to bed early. A good quote found me.

I am adjusting those sails. Again.

I got this. In my case, those words can mean the darkness- degenerative pain and broken-me. It can also mean light. I can do this. I can embrace change. Rise up. Shine.

Meet that big deadline. Onward

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I found your dream home. If your dream home is potentially haunted next to the gas station. This treasure is for sale. Honest.

I actually connect with this sad house. Once, the wood was strong and straight. And it wasn’t ruined by disaster, or a big dramatic moment. No, this house was worn down. One storm after another. Small moments. Falling together. Falling apart.

I marvel how the wood changes and bends and softens. And while this house is sad, I also see strength. Against the odds, against that softening wood, it stands. It refuses to fall.

I wonder who will buy this house.

I wonder how long it takes, for the little damages to add up and become catastrophic. How long can I stay strong? Pain is meant to go away. We want to heal. And we carry through. I carry through. For a few days, a week. But when does it chip away at our every positive thought? How long can you hurt? Before you must return to everyday life with chores and expectations? How long can you be graceful? A week? Two?

Mine is six weeks. Six weeks and I hit a wall. Big wall. A wall that taunts me. I have gone to the orthopedic specialist about my hip which is either sore or shooting pain down my leg. I feel like a pin has wedged between the bones. I am either numb, exhausted, or pushing through the pain.

I could sink like a stone. The nature of this neuropathy encourages sinking, because there is a little voice that says, this is just the beginning and it only gets worse from here.

Then I breathe.


I notice the rose blooming in our front yard.


And I giggle with my boy.


And smile with my sweet girl.

And remember that change is constant. I had an hour today where medicine gave me relief (this doesn’t always happen). And it was enough for me to gather myself together again. We will figure this out. Summer is around the corner. I have a few more crazy weeks. These days feel manic. But I also keep myself centered in the here and now. Sunshine and roses.

Blossoms and laughter. Tight hugs and sweet moments. Moments that matter beyond pain.

I won’t give up on my haunted house

I find beauty.

Over that wall

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I have had AFOs for, gosh, years now. And while I completely embrace my limitations (mostly), I have never worn the AFOs with a skirt, shorts, or capris. I can’t explain why exactly, but I bet many people will understand. I had a wall that needed breaking down.

I broke the wall on Monday. I wore one with a skirt. To school. On a teaching day. I thought it would last an hour or so before it got uncomfortable with my sore hip, but I ended up wearing it all day. I wear one AFO at a time these days because I feel like my gait gets affected a lot when I wear both of them. And I’m trying to find the balance with this whacked-hip and supporting my lower legs.

I expected a flurry of questions.

I guess I have done well sharing my CMT story after all, because… No big questions, concerned energy, or worry from families. In fact, it was quickly forgotten. I shared with kids at Gather Up that I wore it so my leg could be stronger. Their main concern was, “Does your leg hurt?”. Once I said, no, they shrugged and moved on. One girl asked how I got it in my shoe. Another girl from a former year teaching was worried, but the minute I said it didn’t hurt, she also shrugged and moved on.

The wall that I had built was bigger in my mind than in real life. These tools can integrate. They will not overshadow me.

Which is important as warm weather approaches and I can’t wear jeans and sneakers everywhere. Now, if only I could find a good summer shoe that fits an AFO… There’s a wall to conquer

More sunshine through blossom-heavy branches. Loving this beautiful spring!

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The longer I stay away, the harder it gets to post. I fall so behind! I didn’t get to write about this.


Or this


Or this


Or this


Or even this


The story skipped Easter, our overnight trip to the Monterey Bay Aquarium, her Pioneer School days, and her birthday!

Oh my, this mama gets overwhelmed! I am also working on two big writing projects that I hope to share soon. And we are rehearsing for Peter Pan in class. And my calendar is filling with doctor appointments.

I have constant pain again. This time in my hip. So we are in investigaton-phase. Hopefully it’s easily fixed . That is always the hope, right?

When I stop to reflect these days, I get wildly anxious. I know I do too much. I don’t know how to slow down. I feel like this frenzy will lead to better space. But in the meantime, I don’t know how to patch myself together until I reach those calmer waters. With my husband still searching for work, I am the primary breadwinner in the family. That feels plain wrong, since I am on disability. But it’s true. So all of my choices carry big consequences.

If downtime felt indulgent before, it’s guilt-ridden now. Any quiet is crowded with chores, creative projects, and helping my daughter with her reading. I have no space for healing. For recharging. It’s a crash-and-burn pace. I know it. And I don’t know how to change it.

Only a month before summer, hurrah! Summer is usually a great time for me. Turning off wake-up alarms is healthy

Meanwhile, May will be insane. No off-days. Tomorrow is full with my side-projects.

In June I get to breathe easier. Until then, I will try not to drop our story again. Short and sweet is better than silent

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The annual Easter Egg decorating this year!

Ian realized that wrapping them in a napkin gave them cool texture and colors

Ian called the pink RED and really stuck with a theme for his eggs this year . Anika’s eggs got the other colors.

Of course we needed the traditional zombie egg!  Every year one cracks when boiling and makes a perfect nasty zombie egg

Wishing you a very happy holiday!  This Easter Bunny has got to scamper off and get busy filling baskets

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Exciting times during spring break around here

Cat naps

Building train tracks

Laughing at Mama

Still the cat naps

Waking up?

Maybe . . .

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He chose her. She chose him. It’s a lovely thing, a girl and her cat.

A few weeks ago, as the whole story of her learning challenges sank deep, we wanted to give her inspiration. We searched for a companion cat online. Every kitten that we adored would be adopted just before we called, or would have health challenges, or would be unsuitable for a home with children. Each time she was disappointed. I told her that animals choose us, too. They find a way to be with us. So this weekend we took a chance and visited the Sacramento Save our Shelter.

We visited with many cats. Shy cats. Big cats. Furry cats. Cats who climbed the walls to get away from Ian (poor cat- we didn’t stay long). We met up with an awesome volunteer who didn’t give up. We didn’t require a tiny kitten. Just a young cat that was friendly and enjoyed playing. Anika shared with our helper about her dyslexia and the volunteer shared that she had Aspergers. Power to the different!

The volunteer had the idea that Ian and I could stay with a few cats while Anika and Giovanni met others without a crazy little brother underfoot. I was ready to talk Anika into another visit, another day, by that point.

So I I surprised when they returned with paperwork for Flash. This year-old boy was calm and sweet, playful and safe. The perfect cat. Anika renamed him Tiger.

He is settling into his new home. He was taken from an abandoned house. He spooks with loud noises and it will take time to build trust. But he’s also super-cuddly and gentle with the kids. We all lucked out. How wonderful to be chosen

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Ian watches Backyardigans. I have written a bunch of posts over the past weeks, but I get distracted, or needed, or tired. So tonight I’m determined. Just to keep our story somewhat updated. I’ve already said “please don’t” to Ian as he presses buttons. I really need to get bedtime back under control.

Last week I started a new medication. My third this winter. And I give it mixed reviews. It does help control the arthritis pain in my feet. And it doesn’t knock me for too far sidewise. But it does make me tired tired tired (even more than usual). And it’s giving me crazy mood swings. Irritable, fussy, bleak moods that cloud the sky. I’m timing them at around 4 every afternoon. So I give myself lots of room and try to clear the schedule when I can.

This is an ease-into medicine, so I should feel better soon. I hope. I am between a rock and a hard place and a chasm with this situation. I have three choices. I can opt for surgery which was recommended six years ago. This is no minor procedure, though. It means six months recovery for each foot. And the repairs might do more damage than my current damage. I need to seek out an expert in the CMT foot. And I am losing insurance in a matter of months. My husband is still unemployed and no independent insurance company will touch me. So surgery isn’t an option right now.

So then I go back to lifestyle solutions. But, with my husband out of work, we are more dependent than ever on my part time income. I try to rest as much as possible. Life doesn’t wait, though. And it feels like I can never rest enough anymore. And it’s winter, and cold. The pain spikes up my legs whether I am working or not. It’s a constant vice squeezing at the bones in my feet. Even when I’m sitting down.

My old management system was as-needed medicine. I started this winter recognizing that I needed the medicine daily. So we started a maintenance medication plan. This is different from addiction to medication. This is using medicine as a tool in my life, a way to keep the pain from shredding my days to dust. And I got used to one medicine that the insurance won’t cover (too expensive and off-label- not specific to CMT). The next medicine did knock me sideways. The adverse affects had me ditching it after a few days.

Third time’s the charm. I hope. My family is patient with me as I get through this adjustment phase. I have so much respect for good health and balanced thinking. It’s a scary thing when your mind spirals and you wonder, is the problem the problem? or am I the problem?

Each day gets a little calmer. Then I will stop using the as-needed medicine and hopefully find an even track where I can get back to what matters. My kids. Family. Life.

Enjoy the moments.

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Go confidently in the direction of your dreams!
Henry David Thoreau

Some paths we choose.

Other paths are chosen for us.

Her handfuls of stones are for tossing into the creek. They seem a fitting image for the story she carries to school each day.  A balancing, a weight, and, hopefully, a successful adventure in the end.

Last week, I was picking her up when I heard results of recent testing.  Long time readers may remember My Daughter, Learning to Learn.  Last year we discovered that she has troubles processing sounds, an Auditory Processing Disorder.  She recevies extra help at school and I work with her a lot.  We spent this year focusing on phonetic structures.  How sounds feel when we say them, how they link together and come apart.  And she is making progress.  Not at the same rate as her peers, but still.  A couple of weeks ago she read the Cat in the Hat (a few pages) and was incredibly proud of herself.

At the same time, she’s tired.  She comes home from school exhausted most days.  Homework is a stretch of patience and stamina.  We supplement with games and practice on the iPad, but she will give me that look, the one saying, “I am spent. Is there really more?”  And she’s aware that her friends are moving faster quicker.  She has an amazing teacher and the school is completely supportive.  She is getting help, but she has not had a formal assessment.  Until last month.

“She’s has all the classic markers,” our specialist said.  I teach at the school so she and I share ideas outside the formal meetings.  ”First of all, your girl is so smart!”

I knew, of course I knew.  It was still gratifying to hear.

“She sees big concepts and her visual memory is very strong.  She is very bright.”

Which is nice to hear from others when you work with a struggling child.  I see her light and hear her stories.  I want that celebrated and not lost under the learning challenges.

“She has dyslexia.”

Oh.  I assumed that the specialist was going to share the Auditory Processing, not open a whole new path through the forest.  I took the news in stride.  They are connected.  The left side of my girl’s brain is not doing its job.  For some unknown reason, tasks have been reassigned to the right side of the brain.  So she sees logic and big ideas.  She adores storytelling and creative thinking.  And, yet, written language is a muddled mess.  Sounds and symbols are a constantly shifting quagmire.

I have been reading about Dyslexia since then and I’m getting a better picture of the world through my daughter’s eyes.  Luckily, she has been held with such confidence and support that her self-esteem remains strong (mostly).  We have a meeting at the end of the month to gather our ideas and make goals.  She will officially become a Special Education student.  A girl with a Learning Disability.

I celebrate the different-thinkers.  I celebrate the new ideas.  I celebrate the hidden beauty in tangled paths.  And I will help her along this journey.  She has a very strong support network.  I will keep the story going here, along with ideas that work (or don’t work).  Right now, we’ve already switched homework so she does the bulk of it on the weekend.  She said yesterday that it was easier to finish on a weekend-day.  She wasn’t so tired.

I was glad, really, getting a diagnosis.

My relief may sound strange.  As anyone with a disability knows, though, information is everything.  Getting the label means getting the help.  And that is all good.  The underlying challenges are there, whether you have a diagnosis or not.  This way, we can get her help and accommodations.  Because she shines.

She will blaze her own path

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