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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Where to begin today?

Actually, yesterday. When we took a fun trip to the zoo with my mom. We had a great time wandering from the giant anteater to the giraffes.

I wore my brace. Still, I knew I would pay for the fun today. And I’m paying all right. Borderline migraine headache, sore hip, fatigue. What surprises me is how quickly I forget. This evening I was puzzling about my headache. And it was my daughter who said, “Remember, Mom, we did a lot of walking around yesterday. That could be the problem.”

Oh, yes. Wise girl.

Then, since I am on vacation, I want to accomplish the neglected corners around the house. Spring cleaning has inspired me to dust and vacuum, sort and organize.

When I need to sit. Do nothing.

Then, I also have two big projects that require big creative energy. Even when I sit, my mind spins. A recipe for disaster. I must seriously slow down.

I wonder if people realize how challenging these limitations are, these ghosts tying knots around my choices.

People may have idle dreams about lounging on the couch, watching movies or reading books. They may think it would be lovely to let chores slip. They may think that a reason to do ‘nothing’ would be wonderful.

They are wrong. ‘Nothing’ becomes a prison. And the resentment, after an afternoon of quiet, or a day, or three days, when I still feel heavy and tired, that resentment can build into many shades of darkness.

But it cannot be fought. I have a few medications, but the relief is short. And the thump of falling to earth when they wear off is annoying. No, this battle cannot be won. It complicates the dance is all. Early rest. Calm mind. And trust. This too will pass. Except it won’t, not entirely. But the headache will fade

Small expectations. Mighty appreciation

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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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Today I woke up thinking, I am not strong enough. I am done. I am done managing the tricky moments, done negotiating, done rationing my energy. Done worrying. Done working so dang hard just to feel like I can barely keep up. Done. Done. Done.

And the first few hours were tough. Winter has arrived, all pretty gloomy clouds and chilly temps. Heavy rain and indoor play.

And we are on Month 11 of unemployment for my husband. And he has his own story to carry. So when I shared mine, he said, well, you think that’s tough, let me tell you about the job market…

But I couldn’t be his rock today. Today I crumbled. Because I was not strong enough. Feeling sorry for myself? Yes. Am I allowed? Yes.

Not every day. Not even every hour of a tough day. But this is no easy twist of perspective, this journey with CMT. This is a long, demanding journey. And it wears me down.

I don’t even have a Mighty Lament these days. I am noticing again how, with the temps dropping, my energy is even more limited. And I notice how emotional, mental, and creative energies can sap my physical strength. That is more adjusting. Constant adjusting.

No, it’s just that… I am tired. The sunshine will return and I will be grateful for the skills that remain, and enjoy the quiet moments, and savor time with my wild children. And it will be sweeter for these tough days that test me, that strip my logic away, that push me to a place that could be called Despair.

Except that time doesn’t wait. And the world keeps turning whether I am strong or tired. And I find that I am stronger than I ever dreamed possible. I will rise up.

So I had an idea. A little escape. Because it can get stir-crazy in this CMT world. And it can be easy to turn to medications for escape. Except those can cause more trouble in the long term. So what can I do to make each day special? To remind myself of simple, fun, easy days?

Today I made peppermint hot cocoa with mini-marshmallows. Little things. Did I mention that we are broke? But, still, ways to escape. I will keep sharing them as I go along. Perhaps we can inspire each other. How do you escape chronic illness, of only for a few moments?

I feel better now. Stronger. Clearer. Capable again. I better drink this hot cocoa before it gets cold.

Oh, yesterday’s escape. Photos of raindrops sparkling. Photography gets me looking outside myself. Noticing the beauty all around.

Wishing you a joyful day!

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“I think we underestimated your neuropathy.”

My surgeon said this a week into my recovery last May. After the worst week ever. His words could be the story of my life.

It’s easy to underestimate my neuropathy. You can’t see it. You can’t measure it very well. Even I forget the many impacts of CMT. Lately, my CMT gets underestimated (by me most of all) when I get sick.

I don’t remember issues with getting sick in my twenties. I caught a cold. I got better.

In my late twenties, I developed bad allergies. I was diagnosed with asthma and given inhalers. In increments of a few years, I got my Chronic Bronchitis diagnosis and I started getting flu shots.

These days, I just can’t get better without serious interventions (antibiotics, days of downtime). I had hoped that the issues around my surgery (damaged spleen) were resolved, so my immune system would be back on track. I guess not. This cold sank in deep. Yesterday the doctor loaded me back up with inhalers and antibiotics. I feel a little better today. But I could rest a week. Doing nothing. Which says a lot for me, because ‘nothing’ is my most challenging activity.

I don’t have any research to connect CMT and challenges with illness, but it makes sense. A system that’s working its hardest just to get through the day would have a tough time allocating resources to fight a cold or flu virus.

And stress aggravates illness. I know that. I don’t need scientific proof (which is hard to quantify effects of stress on ourselves). I know that in my own reactions. And I am carrying long term, heavy stress. My husband is on month 11 of unemployment. The one possible ray-of-sunshine job opportunity disappeared. My boy is a busy three and a half year old with lots and lots of energy. My girl is navigating third grade with reading challenges. My class at school is fun-busy-learning.

I’m not getting a lot of downtime at all. And when I carve out the downtime, I feel guilty or overwhelmed.

So what do I do?

• First, stop beating myself up over it all. I get to feeling like I should be able to manage everything, like getting sick or tripping is part of my own bad decision-making, but I need to take a kinder approach. I do my very best. And I cannot always outsmart or manage the CMT. It is a rollar coaster and I cannot predict every turn.
• Do the ordinary things like take vitamins, get lots of sleep, eat well. Practice healthy habits.
• See the doctor earlier. I tell myself this every time, and every time I feel like I’m exaggerating my symptoms, so I wait for another week to pass and call when it gets really bad. Don’t go there.
• Downtime. Don’t feel guilty for downtime. (this is the toughest of all for me)
• Stay warm (as much as possible)
• Ask for help. This can be tricky because I don’t always know what I need for help. But I did call my mom on Sunday and asked her to take the kids for awhile. And my husband brought me chicken soup. Little help can make a big difference. And I know that I get proud sometimes, or I feel embarrassed, like I should be able to handle it all, but that does more damage in the long run. Help is a good thing.
• Say no. Or trim back on scheduling. Or, however to say it, slow down life. I tend to schedule my days through the winter just like summertime. When the reality is that winter demands a lot from me. And what is possible in summer- chores, social activities, and creative projects- may be too much for a winter day.
• Sleep.  Get enough.  More than enough. Sleep is wonderful.

A good place to start. The medicine is doing its magic and I feel the fog clearing. My main goal is to be mindful. Thoughtful. Respectful. I will not underestimate my journey. I also will not stop traveling on, experiencing and digging into the juicy stuff of life. Museums, parks, public spaces where germs thrive. I’ll bring antibacterial gel. I could put that on the list with washing hands. That feels like common sense.

I suppose as long as I’m teaching, and I have kids, I will be exposed to lots of germs. I’ll keep being careful. And hopeful.

And I won’t underestimate the big work that it takes. Just to be me.

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So happy to be home. I love traveling, love the adventures, but I also love returning home. I know this place. I don’t bump into corners (as often). I get my routines and quiet(er) times. I am safe here.

And, at the same time, I just want to get away. I’m reminded of all my challenges here. Piles to sort, laundry to fold, crafty supplies to organize. It’s so easy to feel inadequate. Especially because the fun takes energy and I come home needing to recharge.

We used to get help around the house, when my husband was employed. We are going on month ten of unemployment. And he does a lot around here with the big stuff- vacuuming and scrubbing.

I just feel like I should be able to help more, get more done, faster.

The frustrations are not unique to me, or even unique to my situation. Yes, I have a few aggravating factors. And they could overshadow these days together. I could go into a frenzy of cleaning and snipping at my family to pick up more, now, faster.

Or I could breathe deep. Give small doses of time and energy. Take breaks. My knee is still sensitive. It will be fine. I’m careful anyway.

Relax. Enjoy vacation instead of using vacation for housework. Trust the stuff in corners will find homes eventually. Laugh. Give myself room to be me, not an idealized version of me.

That would be a huge gift. To let less be enough.

I won’t get everything done and that has to be okay. Because it won’t get done whether I’m mad or gentle. I don’t get to choose how much energy I will have in the morning, or how I will feel tomorrow. I do get to choose how I treat myself along the way. Tomorrow, I will choose kindness. Sounds sweet

After all, happy moms make for happy families.

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Hopefully it’s now big deal, but in all of these colorful sunshine images, I had to say that I almost fell today. My knee is still tweaked. The sand is tricky enough, all soft and uneven. Then I stepped on driftwood that twisted my foot forward so I stressed my ankle and yanked my knee. I didn’t fall, but I may have been better off if I had gone down because maybe the tendons wouldn’t
have over-stretched. I am doing my best with rest and hopefully it will be ship-shape in a couple of days. But, sheesh, I was sure enjoying my day at the beach before that.
Like I said, hopefully it’s nothing more than a reminder. Step careful

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