Monday was a triumph. No one would know. But I haven’t hiked along the river in years. Years.
Today I remember why…
The river is rocks. And trails. That erode into patches of steep, rocky paths.
It’s beautiful. I love the feel of the air, all fresh and scented with wet rock. I love the tangles of trees. And stretches of mossy bark. And the music of water through rapids. The river changes around each bend, the noise a rush then a soothing whirl of constant movement. I love the river.
The river heals.
And the river hurts.
It was my own fault. I’m in a rough place again. My hips, my legs, even my hands (I used my arms to brace against rocks, and slipped once landing on my right wrist- not bad, but bad enough.) It just felt nice, to be in nature, to see the kids climbing and playing. It felt good to conquer the doubts. It felt really good. See who wins? Me.
Except I’m paying for it now. Two days later.
I just need to go to the easier trails. Find the accessible spots. Stay closer to one spot instead of exploring down the trail. I just need to ….
Accept my limits.
And it’s so frustrating!
Deep breaths. I’ve been going to the gym to build strength for outings just like this one. And I felt ready. But I don’t know. Maybe I’ll never be ready.
I have an especially difficult time when I see how my limitations affect my family and friends. I want my children to experience the river. To go into nature. To find the rough trails and discover the deep forest. I want that.
I can have it. Just not in the way I hoped. We can go. And they can explore while I bring a book
It’s all about balance. Pretending that the limits don’t exist won’t help me (obviously). Pushing through doesn’t help with CMT.
The song playing right now for me is Slow and Steady by Of Monsters and Men. Isn’t that appropriate?
I give myself permission to be frustrated. To long for more strength, an easier path.
I also need to let go. I need to let go of the fears that flood me when CMT roars. All of the “what ifs” and “how will I?”
I will find answers when I need answers.
For now, I have today. And I’m going to take it easy (ha) and exercise gradually and wear a brace so this angry-wrist will heal. Yes, CMT is getting more demanding. Yes, it’s scary. Yes, it’s overwhelming.
But guess what? I’m strong. And creative. I can manage this. One day at a time.
I will have adventures. My family will have wonderful memories. We can all enjoy this journey together. CMT, change, and all
*Disclosure- this post contains an affiliate link to iTunes. Thank you for supporting Lenkaland
Happy Year of the Horse!
Last weekend was a gorgeous celebration with lions and dragons
Rain brought the celebration indoors at the Miner’s Foundry.
We arrived early, which was good, because the lions needed a lot of room for dancing! We saw them getting ready for the show- which helped my kids realize they didn’t need to be afraid when the lions arrived.
I had to photograph Ian’s rainboots. Seriously, I need these in my size.
Then the lions appeared. One after another. Beautiful!
They danced, then made room for the dragon.
The dragon arrived all calm and graceful.
Then the lions returned. They had many tricks up their sleeves. Jumping tall and eating lettuce only to spit it back all over the audience (a symbol of good luck :))
They were such fun! We loved their little tails, and a few had great wagging-moves
The audience (after being flung with lettuce which you can see all over the floor) got to feed dollars in red envelopes. Bravo to Eastern Ways Martial Arts Lion Dance Team for the incredible show! I love seeing the enjoyment in the audience smiling!
This lion chased its tail!
We loved the reveal, when they got to take off the costumes for a few moments to bow. “Look, mom, kids!” my own kids exclaimed.
We learned about the different dance moves and stories. What a spectacular treat!
Afterwards, Grass Valley Taiko Drumming inspired more new year celebrating.
And the audience was a big part of the show
Everyone enjoyed welcoming the New Year. We hope this year brings everyone love, joy, and wonder!
The full gallery by Lenkaland is here:
Giovanni’s photos are here:
Another amazing event in Nevada City at the Foundry! Thank you to all the organizers and performers!
Going to be a good year
I wasn’t worried. Until I got very worried. My neurologist was retiring. And I needed a new one. I would find out who everyone recommended and schedule an appointment. No big deal.
Until I thought about that appointment. What would I say? What would he (or she) think of me? Would he (or she) know about Charcot Marie Tooth? Would he (or she) care?
Would he (or she) believe me?
Please, please believe me.
I had a few months of behind-the-scenes drama with local doctors not getting high recommendations and needing insurance approval to see a doctor farther away. And this No-Big-Deal became a Super-Big-Deal.
After all, I had been seeing my neurologist for nine years. Nine years, going from yearly check-ups to every six months trying to get ahead of worsening symptoms. Nine years of referrals to specialists. Nine years of stories. He knew me.
And that meant a lot, I realized, as I penciled the appointment into my calendar. He had nine years. I have a lifetime of stories. So many ways that CMT has impacted my path. Impacts my family. Impacts my life.
I checked in with my retiring neurologist to be sure that he sent my records to the new doctor. I also got my own copy. Just in case. Because it’s always good to have a record.
I was so nervous about how that first appointment. After all, I am ‘just a patient’ but my quality of life depends on my support network. My neurologist is a huge part of that network. Thankfully, the appointment went well and I actually have new hope. New ideas. Hurrah!
I followed a few simple guidelines that helped a lot. And I learned a couple of tricks that will help next time.
First, I condescend my story to a page. Well, a page and a half. This helped me keep my focus and not wander into 100 side stories and anecdotes. And it helped him too. I made each section a bulleted list with a few words. The long story was in my medical records. These were the Cliff Notes
I brought all of my braces (AFOs and wrist supports). I learned that I should bring my medications (below).
Here is what I included in my All About Me:
Medications: I listed these, then I had a couple of typos, which caused confusion. His suggestion (brilliantly simple) was to put all prescription medicine bottles in a bag and bring them. Then all the little details (like is it suspended release?) could be easily found.
Primary Concerns and Challenges: This was a good process for me. What are my biggest challenges? And it came to (surprise-not-surprise) chronic pain and fatigue. I also listed depression/anxiety. I listed where I had to pay attention (arthritis in feet, hips, etc.) I realized that I don’t have a contingency plan for Flare Ups and Breakthrough pain. We are working on that.
Co-Conditions: Here is where I listed Asthma and Chronic Bronchitis, Seasonal Affective Disorder and slow healing. Anything that I received treatment for through another doctor or specialists. I wish CMT was my only challenge :). I wanted to show the bigger picture.
Modifications and Support: Here is where I listed that I visit the gym a few times a week. I stretch and exercise. I am on permanent disability. I recently had to resign from part-time teaching thanks to CMT exacerbated symptoms. Here is where I listed highlights of how my life is already accommodating these challenges. My AFOs and braces for my wrists. And that I take vitamins (though I probably should have brought those bottles, too…)
Secondary Challenges: This is where I put weakness/numbness in my hands. Insomnia because I am wired trying to stay awake all day. And hyperextending. I didn’t write much. Just the little stuff (haha, none of it is little. Compared to the big stuff it feels little :))
And I added a couple of notes about a medicine that we tried to get for years but insurance wouldn’t approve it. And my possible sensitivity to medications. They work great or they are a disaster.
I couldn’t keep it a page. It was still brief enough that we could talk about the things that really mattered. And it helped. Because he said that I don’t present many challenges. My strength seems good during the exam. Yet he could tell that CMT has big impacts on my life. And he wants to help.
Hearing that was such a relief. I cannot even share how much power there is in saying, “I believe you.”
And I know it’s a learning journey for both of us. I learned to bring my medicines.
I see him again in three months. I will probably write all of my notes again. To see what changes.
Meanwhile, we are working on a referral to CMT specialists even farther away. Just to see if there is anything we else that we can do to help along this journey. I am building a new team. And I am optimistic. Which is way better than nervous
What a strange and winding road…
Wishing us all success and good support on the way
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