CMT Goodness

Life After Funk

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Wow. That was a long road.
I knew recovery would take a while but I never imagined it would take 4 months.
I also assumed my recovery would be purely physical.
Wrong again.
Sometimes I think the mental recovery was worse.

But the good news is, I finally feel like I’m back.
I haven’t had to take a pill for a week (not even an Advil!) and while I have a few little tweaks of pain here and there, it’s nothing that I can’t handle. And since there is no more pain when I walk, I walk better. I’m still a little slow because I’m still figuring out how to walk the right way, but that’s OK. I’ll get faster. Until then, feel free to enjoy a leisurely stroll with me while we chat.

The best part is that I’ve started writing again.
I wrote some when I was laid up on the couch this summer, but I can’t write on a couch. I’m a sit-at-a-desk-while-I-write kind of girl which was hard to do with a huge cast covering my leg.

I got into a not-writing funk. I floundered on what to work on, flip-flopping to a different project every week, frustrated that the words weren’t flowing like they used to. Writing makes me happy, so without that I felt lost. I needed something to get me back on track.

First, I read Stephen King’s On Writing.
Hands down the best thing I could have read. I’m a huge SK fan so I’m kind of shocked I hadn’t read it before this, but he’s just the right person to give you a swift kick in the pants to make you put your fingers to the keys. (And make you laugh while you’re doing it) I’m sure the other parents in the school pickup line were wondering what I was on as I laughed uncontrollably behind the wheel.

This sentence from the book was exactly what I needed.
At the start of the road back I just tried to believe the people who said that things would get better if I gave time to do so.

I had stopped believing.

Another huge part in getting out of my funk was going to the Northern Ohio SCBWI (Society of Children Book Writers and Illustrators) conference in Cleveland last weekend (will try to post a re-cap sometime this week). If you ever need to be inspired, sign up for an SCBWI Conference. I’m lucky to have one so closely available to me and it did the trick.

And now I’m signing off to write.
It feels so good to be back.

My New Foot!

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**WARNING**
If you have a queasy stomach, like I do, and don’t like looking at medical things like stitches and incisions, you may want to consider NOT reading this post.

I know I have some followers on my blog for my CMT posts (Hello! *waves*). This post is for you!

The leg braces I wore for the past 3 years were starting to wear down my knees. But because the heel of my left foot could not reach the floor, they couldn’t fit me into better ones. So mission #1 – completely rebuild the foot.

That’s what I had done on June 10th. Now, I’m a strong girl. I’ve gone through a ton of crappy things in my life, but I’ve always felt that everything I’ve gone through has made me stronger.  This past week of recovery has definitely been the hardest thing I’ve ever done.

On my left foot my surgeon did eight major and two minor surgeries. I have 8 incisions. I couldn’t look at it before they casted it on the 11th. He told my husband that it looked like it was in a shark attack. When I finally had the guts to look at it tonight I see just how right he was.

Shark Bait Hoo Ha Ha.

This was what my foot looked like this morning. My surgeon said it looks good –>.
Ha.
But then I came home to an unspeakable amount of pain that my pain medication is barely making a dent in. I hope it’s better tomorrow. I’ve had a few people ask me when I’m getting my other foot done. At this point, never. But we’ll see once it’s healed. Maybe I’ll change my mind someday so I’ll have matching feet. Maybe someday I’ll forget how badly this one hurt. Maybe.

 

For the Love of Boots

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From the moment I could walk, I’ve loved boots. I think my first pair were white go-go boots in the 70’s. The 80’s had me doing my best Wonder Woman imitation (—> see photo on right).

But that’s when I could walk without my braces. Believe me when I tell you I’ve tried my hardest to find a pair that I can wrangle those braces into, but it’s pretty much impossible. To put on a pair of boots you have to flex your foot and my braces were not built to flex. Major bummer.

This week I suddenly needed a good, somewhat professional looking photo of myself to put on the Adams Literary website. My good friend, photographer and critique partner, Renee, was going to take me out Sunday to take some pictures for me. While seeing Oz with the fam on Saturday the thought occurred to me – I need to wear boots! Then I wouldn’t have to try to hide my leg braces, my silly tennis shoes, and I would look like a half-way normal person!

Even before the credits rolled I leaned over and whispered to Chad, “Can we stop at the shoe store on the way home?”At least in the dark theater I couldn’t see the weird look he probably gave me. But that’s why I love him so much. He knows I’m crazy and just goes with it.

Now, here’s the reality. I can’t walk without my braces anymore. My balance and my ankles are shot. But I was sure I needed a pair of boots anyway, even if I had to carry them with me to the shoot and put them on while I was sitting there. They would look cute, and isn’t that all that matters? No one would need to know I can’t really walk in them.

So Chad took the girls in the pet store next door to give me time and sanity to try some on. I tried so many on and I think I fell in love with each pair. But then I sat there, among the half-opened boxes of boots and realized something. I don’t need cute boots to be happy with who I am. I thought I’d moved past trying to pretend I’m someone that I’m not. But I guess everyone has their moments of weakness, including me. I wrapped them all back up and had them all back on the shelves before Chad and the girls came in. I walked out, not with new super-cute boots, and without a missing chunk of change from my bank account.

I am who I am, and no amount of fake boot wearing will ever be able to change that.
For now I’ll just dream of the day when someone will design some cute boots that fit over clunky leg braces. I haven’t see the pictures yet, but I know I’ll like them a lot more knowing that it’s the true me in them.

Oh yeah, about my feet.

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September is Charcot-Marie-Tooth awareness month. And since most of my friends and family really have no idea what it is that’s wrong with me (OK, well, one of the things!) I thought I’d take the opportunity to tell you a little about CMT.

Charcot, Marie, and Tooth were the three scientists who discovered the disease, which is why it is called what it is. The disease has nothing to do with my teeth. We call it CMT because it’s shorter and easier to say/remember. In this case, CMT does not stand for Country Music Television (although as much as I can’t stand country music, I’m kind of glad I don’t have that CMT!)

Here’s the low down of what it does and a really quick health lesson (because I nearly flunked Health class in high school – go figure.) Your brain sends signals to your nerves to move your muscles. CMT affects the nerves in your extremities and makes them malfunction. So when my brain sends a signal to my brain and says “Hey, you’re walking now, move that right foot!”, sometimes my nerve gets it and does nothing. It doesn’t make the muscle move even though my brain told it to. You can imagine the problem that creates. I think my foot is taking a step forward, and maybe my leg moves like it should, but my foot muscles don’t move because it didn’t get the memo. And I fall down. Super-fun, right? It also causes all kinds of pain and muscle cramps. Last night my arms and legs were cramping horribly so I just took lots of Advil and went to bed.

So because those muscles don’t get the workout they need, they atrophy and cause my arms and legs to deform. My feet are pretty bad off. They’ve turned in at the ankles, and my ankles are really weak. So far my hands haven’t deformed but are just very weak. It doesn’t mean they won’t atrophy eventually, but for now they’re straight. When I was first diagnosed 11 years ago their solution for me was to break all of the bones in both of my feet and fuse them all back together the right way. I know a few people who have had this done and love that they did. I also know a few people who’ve had this done that hate that they did. For me, just the thought makes me get all queasy so I’ll pass on that one. Instead I wear leg braces up to the knee so that I don’t fall down. They are like plastic miracles for me! I still can’t run, but I don’t have to worry about falling for the most part. And they kind of push my feet back to the way they *should* be. Sure, I can only wear New Balance tennis shoes (so if you see me in a dress and tennis shoes, I’m not trying to make a fashion statement – promise!)

And don’t worry, it’s nothing you can catch. It was passed down to me from my dad, and his dad, and so on and so forth. They didn’t have it nearly as bad as I do, I guess I just got lucky. 🙂 Could I pass it on to my girls? Maybe I already have. There’s a 50/50 chance. But the good thing is that it doesn’t get progressively worse with each generation, so even if they do end up having it – they may never show a sign of it. There’s no cure and no treatment. Yet. I keep hoping that someday there will be, but the reality is that CMT is somewhat rare and there just isn’t the funding available to make huge medical breakthroughs.

My reality is this. I’m a half-glass-full kind of girl. I’m not sad (except when the pain is really bad), and I do believe God had a reason for giving me this. Haven’t quite figured out what that is yet, but I know it’s there. I’ve figured out that stress is BAD for it, so I sold my high-stress company and got a low-stress job. I try really hard to stay away from stressful situations. And the best part is that I have THE most unbelievably loving family and group of friends who love me and support me – I couldn’t ask for anything more in life. I’m a happy girl and life is good, always.

UPDATE: September 2014
I changed my mind. Last summer I had my worst (left) foot completely rebuilt. It was a 9-hour surgery. Now, a year later, I’m glad I did. The difference in my foot is amazing and I couldn’t be happier with it. Maybe someday I’ll get up the guts to fix the other one. 😉

Barbie has CMT (an unofficial diagnosis)

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I’ve never kept the details of my Charcot Marie Tooth disease a secret from my girls. With each having a 50/50 chance of having it themselves, it wouldn’t be fair to them not to talk about it. I want them to be as informed as possible should they ever show symptoms.

There is a way we could tell if they have CMT now. We could get them genetic testing. But when I had mine done a few years ago, I got a bill for $15,000. I called the insurance company as soon as I opened the envelope to tell them they must have made a mistake and put one too many zero’s in there. She laughed and informed me that there were two tests they had to run, each for $7,500. So two children, at $15,000 each would be $30,000. And really, the money isn’t so much of an issue. It has always come down to this. Would my husband and I love them or treat them any differently if we knew they had it? Absolutely not. So we’re fine with not knowing.
When my 8-year-old was sitting with me this morning playing with her Barbie doll, she said “Hey look Mom – Barbie has CMT just like you!” and pointed to her feet. I have VERY high arches, a result of the disease. I had to laugh. Back when I was her age our Barbie’s had even higher arches than her Barbie does. But she’s so right. Barbie does kind of look like she has CMT. I just wish I could get all of the custom-made shoes that Barbie has!
Side note: Back when I started this blog and I was making the labels/categories for the posts I refrained from making a “CMT Goodness” label. Because really, how could an incurable, disabling disease be considered good. But as I think I’ve mentioned before – I’m a half-glass-full kinda girl. I can find something good in just about everything. And I do believe there are good things that have come from my having CMT. One day I promise to post a list. And as of today, I’m adding a new category to the blog – CMT Goodness. 🙂

What’s up with the holey knees?

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CMT makes you fall down. A lot.

Back when I was in high school I didn’t know that I had CMT; I’d been mis-diagnosed so many times. Had I known it was CMT wreaking havoc on my feet I might’ve gone the leg braces route and I wouldn’t have fallen up the stairs, down the stairs, and in the middle of the hallway so much. My high school had five floors, and while it had one small elevator – only teachers were allowed to use it. With my homeroom in the basement and my French class on the fourth floor, I’m sure you can imagine [insert sarcasm here] what a blast I had as a high schooler.
Even when I did get correctly diagnosed in 2001 they sent me to get fitted for leg braces and I decided I wasn’t going to go that route. Leg braces? There was no way I could walk around in those big metal things. Pride can sometimes be a horrible thing and I had a little too much of it.
I think back now – I’m quickly approaching my one-year-with-braces anniversary – and wonder how much easier my life would’ve been had I gotten them when they wanted me to. Without them I would fall daily. Every pair of pants I owned had knees that looked like these. For a while it was fashionable, so I was OK – but most of the time it wasn’t and I sported the look anyway. In the year I’ve had my braces, I’ve only fallen once.
I don’t have holes in my knees anymore – but a part of me is still that girl smiling in the picture. Too proud to admit something was wrong, too headstrong to give in, and too sensitive to talk about it all. I like to think most of me has matured enough to accept it and move on. The truth is, I’m still trying.

Waking up to Wall-E

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I fought against getting leg braces for over ten years.

It didn’t help that when the doctor told me I should have them, I pictured the big metal contraptions Forrest Gump wore and thought “No Way!”
But last year I gave in. I knew we were going to try to go to Disney World in the summer and I knew I couldn’t go when my legs would wear out after walking five/ten minutes.
They are AMAZING.
Why didn’t I put my pride in check and get them ten years ago? I’ve been wearing them for a year and I never leave the house without them.
Yesterday I thought I’d be a trail blazer and go to Sam’s Club without them – silly girl! By the time I got to the back of the store I thought I was going to have to crawl back to the register, my legs were that tired. Thankfully I made it back to my car, but it was excruciating. And I learned my lesson.
I was talking to a friend a week ago. She was telling me about her friend who also had Charcot Marie Tooth disease and said that her friend refused to get braces. I wish I could talk to her friend. I could probably walk for miles without my legs getting tired and I LOVE IT. I feel like my braces have given me brand new legs.
And of course, it helps when I wake up in the morning to find little “surprises” in them from my five-year-old. 🙂
YAY for my legs!