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 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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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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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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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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This week we talk App reviews, Instagram for Android is released, April Fools gags, Mac trojan malware resurfaces and more.

April Fools!

Google Maps 8Bit

Complete YouTube Collection

Gmail Tap

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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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