The Good, Bad and the Ugly – 6 Months of ExoSym

As Jared of Jared’s House of Pain told me in my first days with my ExoSyms, “These devices are perfect for you, when we get your body in the right shape for them.”

He wasn’t kidding. Looking back I can say in all honesty that I’m stronger and am getting the hang of what these babies can do. I had physical therapy for five months after getting them and my PT told me on the last day that she still sees improvement every time I come in. I’m getting stronger and better with every month, though some days it feels like it’s not fast enough for me.

I’ve seen a lot of questions on the Club Foot and ExoSym Facebook pages, as well as questions from folks who’ve read this blog. I thought I’d share answers to some of the most common for you all. Here are some observations of what has transpired and what life with ExoSyms includes:

The Good

I’m stronger. The day I came home with the devices, I couldn’t make it up the steep slope of my friend’s driveway when I stopped by to pick up my kids. I needed her help as without the movement of my ankles, my muscles couldn’t get me up the hill. I do that now so easy without thinking. I still notice I’m getting stronger every day by just staying active.

img_7966New Life. I can go for walks, keep up with the kids, play in the snow (went sledding for three days), hike, play tennis, and stand for longer periods of time than I did before these devices. This is what they’re for. And they work, getting even more valuable every day.

Clothing choices. I was worried I’d have a hard time finding clothes that worked with them. Truth is, because I’d already had small calves, they’re not that thick around the base of my knee and as such fit just fine under work slacks and loose-fit jeans. I’ll also wear them over leggings and add a skirt if I feel like it. In the summer, it’s shorts. They fit fine under my snow pants for winter play. (Individual results may vary. Avoid where prohibited by law.)

Airports. You don’t have to take your shoes off anymore!! I’ve been to several airports in the US and Canada. They see the devices. You get your legs patted down and they wipe them with the explosive detecting swab which they run through the machine, and off you go. Sweet relief from the pain, literally and figuratively, of taking my shoes off every time.

The Bad

Shoe Finding. Damned if it isn’t still hard to find the right pair of shoes. Dominic at Wide Shoes Only shared a number of things we ExoSymers need to keep in mind when purchasing shoes. I shared those tips here. I drool when I see folks posting photos of shoes they’ve found that work for them. My feet aren’t big enough to fit the smallest men’s shoes, which closes many doors for me.

Shoe Life. These babies are tough enough to go to war with soldiers. And they go to war with your shoes, ripping through the sides of them well before you’ve worn out the tread. Spending $175 on shoes every three months is driving me to the crazy. Though I think I’ve found a way to slow down the process. I share some shoe life extension solutions here.

Patience. I put this in the bad category because I’m woefully deficient in this particular character trait. I want to be done and I want to be done now! So, you can imagine the frustration I go through when I struggle up a steep hill, have a sore back because I’d not been paying attention and fell into old walking habits during a hike, fall face first into a foot of snow much to the glee of children around me, etc. You absolutely HAVE to be patient with yourself. Retraining yourself to walk properly (or in my case, learning to walk properly) takes time. Especially when you’ve been doing it wrong for so long. Old habits and all that. Working out, when you would rather poke yourself in the eye, takes discipline. Building muscle takes time. Stretching out tight tendons takes time. Pushing yourself faster than nature can go causes injury and pain. Be patient with yourself. Take your time to build up to your potential. Reward often with chocolate…

The Ugly

Weight Gain. And not from the chocolate rewards. I was shocked when I stepped on a scale a few months after getting the ExoSym and discovered I’d gained four pounds. I’d been walking and working out more. How am I gaining weight? Then it hit me. MUSCLE! Yuppers, you get to gain muscle as a clubbie with ExoSyms. But you have to admit you weigh more, if that’s something you care about. I’ve gained hamstring, thigh and core muscle.

Calf muscles. Bye-bye. I wear my devices all the time, from the time I get up and get dressed to the time I get ready for bed. I’ve not found slippers that work with them, but I imagine there must be something out there that does, like Uggs, which are fine for puttering around the house. So, with virtually no use of my calf muscles, I’ve lost a little mass there. I needed to have the devices adjusted to make up for it. That’s one question I get from folks considering the ExoSym. What happens to my calves? You lose what you don’t use. I consider losing some calf muscle (which is pretty skimpy to start with for a clubbie anyway) a small exchange for gaining mobility.

Looks and Questions. People stare and some will ask questions. I keep an upbeat attitude and tell them these are my exo-skeleton that lets me be bionic. Sometimes folks are just curious. Other times they’re thinking of themselves or others that might benefit and want to know more. It can be uncomfortable when I’m having an introverted kind of day.

Adjustments. You have to budget time and money for adjustments. (While getting them adjusted is a part of the price, getting them and/or yourself to Hanger is where you spend the money.) I’m very fortunate that I live so close to Gig Harbor and Hanger. I can drive in and hang out for a couple of hours while Ryan works his magic to tighten things up and add more padding where padding has worn down. Folks further away send theirs in or fly out for the adjustments. It’s par for the course with these devices and I’m told the longer you have them, the less adjusting you’ll need. As your body strengthens and adjusts, so will your ExoSyms need to be slightly tweeked to match your growth.

And that’s about the long and short of it from the 25,000-foot level. If you have questions or have found other things in your experience you’d like to share, please do add them in the comments below. Thanks!

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Anxiety and Anticipation

Yesterday we received news that the remodel we’ve saved for 10 years to do on our house has exceeded the budget thanks to rising construction costs, despite my cutting the extras I’d wanted. And one week before I’m to pay out the high deductible for my ExoSyms. Awesome.

I had planned on taking the family with me on a work conference on the Big Island of Hawaii in October. The kids have been begging to see real hot lava and this was a great opportunity. However, based on the construction news, last evening we made the difficult decision to cancel the family vacation to save money.

After many tears (the kids and me), my husband had another idea: “Your feet are more important. Once you have your ExoSyms we can go on some hiking trips close to home to Mt. Rainier and Mt. St. Helens this summer with the kids. Hawaii and its lava aren’t going anywhere. We’ll go another year.”

Something in my subconscious must have grabbed onto that suggestion because last night I dreamt I received my ExoSyms. Well, if I’m being honest, it was a total anxiety dream from HELL.

The foot parts of the devices were the size of snowshoes and the straps (made of flimsy plastic in this nightmarish version) wouldn’t wrap around my tiny calves. The staff was nonchalant when I asked why they didn’t fit, saying my feet and calves were just too small and it wasn’t going to work for me.

My conscious mind must have known what was going on because I remembered I’d seen ExoSyms for a little boy, but when I tried to tell the staff this in my dream, they looked at me like I was high. I couldn’t walk in the devices and fell a lot. My feet and neck were killing me. I sat down on the floor and cried at the realization I’d not be doing things with my family after all. I was doomed to living in this constant pain for the rest of my life. I’d gotten my hopes up for nothing.

I woke up crying, with a neck kink for good measure. I was so relieved to realize it was a dream, but the reason behind it remains real enough. I’m afraid to put too much hope behind the devices. What if I can’t do all I want to do with them?

The good news is, the results of these devices is guaranteed to be 100 times better than that dream. But how much better will it be than what I live with today? The tendonitis in my left ankle still hurt when I tried on the test devices. That haunts me.

Sometimes all this waiting between test device and actual devices can be good – time to save money, do preparation exercise and plan the things I’ll do. And at the same time it can be bad – giving my over active imagination WAY too much time to design worst case scenarios. The fear of getting my hopes up too far is real, and completely natural. I’m doing my best to keep the faith and trust in the process. It will be better. Just how much better, we shall see.

In the meantime, I’m putting together my simple list of things I hope (please, please, pretty please) I’ll be able to do once I’ve received, learned to use and strengthened my body properly for the ExoSyms.

My ExoSym Bucket List

  • Confidently take thousands and thousands of steps every day without fear of sudden debilitating pain at the wrong step.
  • Go for several mile hikes over uneven terrain in the mountains with my family and my exceptionally outdoor brother’s family.
  • Walk around the zoo, downtown, state fairs, malls, Disneyland and any other hard surface area for hours without pain.
  • Walk with my daughter and her Girl Scout Troop in parades, hikes, and events.
  • No longer cringe when asked if we can walk the dogs or go to a playground.
  • Go for walks on rocky and sandy beaches.
  • Play tennis, basketball, baseball, Frisbee, soccer, and any other sport my kids want me to play with them.
  • Clean the house with zero foot pain during or at the end.
  • Go snowshoeing and cross-country skiing in the winter.
  • Learn to run (more to keep up with folks than to take it up as a sport; though it does come in handy during a zombie apocalypse).
  • Jump with the confidence that I won’t double up in pain when I land.
  • Go to bed at night after an active day and have no need for a Tylenol PM to help me sleep through the foot pain.
  • Confidently take a fast hard step to catch myself when I trip and not feel gut wrenching pain as a result.
  • Keep up with my active, energetic kids and be able to participate in whatever they want to do. (Never saying “I’m sorry honey, my feet won’t let me” or “I’m sorry, I hurt too much today” again.)
  • Tell a really creative story about my secret mission that lead to my injury and the ExoSyms, and what happened to “the other guy” if anyone asks what the devices are and why I wear them.

Anyone Seen my Comfort Zone?

The decision to go for the ExoSym devices has been a massive exercise in stepping out of my comfort zone. For more than 40 years I didn’t really talk about my birth defect. I just got on with life. “I have a birth defect in my hips and feet,” was all I typically said when people asked. Unlike many Clubbies, my condition wasn’t very hidden as I had a limp due to my hip. Most folks didn’t realize it was my feet too, to be honest.

I’d push myself to be as normal as possible and follow my dreams. I was never comfortable talking with anyone other than my doctors about my hips and feet. My mom didn’t really talk to me about it either unless I asked specific questions. In fact, I only learned this past year from her what my hips and feet looked like at birth. It had never occurred to ask before.

As if to illustrate this, my brother called me today to ask about the devices. I’d mentioned I was getting them to his physical therapist wife, asking if she’d heard of the ExoSym. She hadn’t and that was the end of the conversation. My brother called, saying he’d talked to his wife and wanted to know what I was getting and why. I told him they’d help alleviate the pain of my clubfoot condition. “What’s clubfoot?” he asked. That really drove it home for me. My own brother didn’t even know why my body was the way that it was. We’d never talked about it.

Other than getting comfortable talking about it, the other difficult aspect has been moving past the stigma that having to wear these devices on each foot means I’ve lost to the clubfoot. I’ve fought moving into braces for years. Anything but giving in to that. However, surgery didn’t help and more surgery was way too daunting.

What has really made this all so much easier is my tribe. I have a tribe I didn’t know existed. Well, I knew there were other Clubbies out there, but it never once occurred to me to look for them. When the Hanger Clinic suggested I join the ExoSym Facebook page, I did and made a few Clubbie friends there. But each one said the Clubfoot Facebook page was where many others that understood what I felt and experienced could be found. And find them I did. Talking to and seeing images from these other amazing people was life changing. I wasn’t alone in this anymore. Others felt the same and had similar experiences. I even had answers and insight for some, just as many had the same for me. And the support for each other is amazing.

That too was apparent today when I reached out to one of my new friends from the group who also has an ExoSym. I told her I’m still fighting the stigma in my head about braces. She stopped whatever it was she was doing and responded right away: “I too felt that the ExoSym would be a defeat after all I have tried. Once I put in on and saw how it decreased my pain to nothing and allowed me to walk on uneven ground so easily, the thought of seeing it as a defeat left my mind. I actually like wearing it and I see it as MY defeat over clubfoot,” she wrote. “The Exosym is unlike anything I’ve had before. After a few days of wearing it, it became very clear that this was not a brace at all but a very high tech prosthetic. I’m proud wearing it, as so many people ask me what it is because it just plain looks cool. It’s such a new cutting edge technology and I’m proud to be able to spread awareness.”

Thank you Becky, and all my tribe. May going way out of my zone to share this all for the world to see help you all right back.