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.

ExoSym Preparation Exercises

As a “local” – able to drive in to my appointments rather than flying in for 7-10 intensive days – I am on a more spread out schedule. I have to wait 17 long days between my casting appointment and the day I get my ExoSyms.

As I wait out those long days, I’m doing what I can to prepare. Ryan sent me a PDF outlining a number of pre-ExoSym exercise I can do to strengthen up for the devices – building up the weak muscles I’ll need, especially my core.

While the PDF didn’t outline the need for them, I purchased a 55cm stability ball and a 9 in pilates ball because I know several exercise using each that can’t hurt. Plus, it’s great motivation – having to work out in preparation for ExoSyms – to try taking a chunk out of the old muffin top, eh?

Now, when I got the PDF and excitedly had a look through the few exercises with visions of studly core muscles dancing in my head, I quickly needed to put a few things in perspective. The 30 repetitions, three times, five times a week of “injury side up T-crunches” is a goal to aim for, not an immediate expectation, for instance. If, let’s say, you’re crying for your mommy after 10 reps one time on day one, this is not a failure.

So I do my recommended exercises, plus a few more hip exercises I know my weak right side needs from past physical therapists. I try to do them every day. Lower ab work a day or two during a certain part of the month sucks raw donkey balls and therefore are avoided. But otherwise, I’m keeping up as best as I can. I won’t admit how many of the “recommended” reps I can actually do for some of these exercises, but the important thing is I’m doing them as much as I can. As long as I am sore the next day, I know I’m doing some good. That blasted pain-gain correlation and all.

It hurts to laugh some days and I need a hot shower in the morning to get going, so I know it’s working.

Exercises I do:

  • Straight and bent knee leg lifts on the right side (for my week hip muscles)
  • Plank exercise (on back, put calves on stability ball, slowly rise up to a plank, hold, slowly lower)
  • With small palates ball under small of back, leg lifts, scissor kicks and knee bends
  • Single leg push ups (both legs for me, from knee because hurts feet too much to do properly)
  • T-cruches (both legs)
  • Leg lifts – straight and bent knee (lay on stomach, lift legs)
  • Single-leg bridge (both legs – way hard for me on my right side)
  • Single-leg reverse hyperextension (both legs and easiest of all the exercises for me)

One week to go!

Visit Two: Test Devices

ExoSym Test DevicesToday was my second visit and my first taste of what the ExoSyms will be like as I tried on my test devices. I went in with an open mind, but well armed with advice from fellow Clubbies – don’t expect the angels to sing and sudden freedom from all past issues the moment you put those babies on. Good advice. And dead on.

Last Thursday, I was casted for the test devices. Today was the appointment where I’d try them on and Ryan would adjust them as necessary (until today, a rather ambiguous process).

The kids and I drove out to Gig Harbor and I met my dad in town for lunch. He took the kids so I could go to my appointment.

The first piece of advice I’d like to impart from today’s experience is “bring reading material.” This is the second meeting where there was a lot of alone time as I waited for a very busy Ryan. I worked on my ruthless solitaire skills and made a mental note to never forget my book again.

When I was first escorted to my exam room, I saw two women testing out their brand new ExoSyms – one each. One lovely lady from Albuquerque stopped to talk to me briefly. She was still getting used to it, but said she was walking with no pain. She was really pleased, which gave me hope. She wasn’t a Clubbie, but had been dealing with a deteriorating ankle and past surgeries, so she was so pleased to experience walking without pain. “The doctors told me my next step was surgery with a cadaver bone. That didn’t sound good,” she joked with me.

Not long after, Ryan arrived with my test devices. They’re basic clear plastic outlines of what the ExoSym will be, without the strut and far more plastic than there would be fiberglass in the final devices. Ryan gave me some knee sleeves and had me try on the devices. The right one fit so nice, but the left one was way too narrow.

The device with my shoe on.
Ryan had me put on my shoes. I think my shoes yipped, I’d stretched them so to get my feet in. When I stood, I noticed if I relaxed I hyper extended me knees. It felt more natural to try to stand on the balls of my feet.

Ryan took them in the back and “adjusted” them. When he came back, the left one was warm (he’d heated and expanded it). It was closer, but still no cigar. Off he went to do it again. This was when I became convinced I could beat solitaire.

The next time he came in, I tried them on and Ryan put in the world’s most comfy wedge lifts. I kid you not. So soft and spongy, and just the thing to level my feet. A little extra lift in the right shoe and off I went.

First he had me walk with parallel bars on either side of me. He noticed my left toes pointed out and he corrected me. I got that down right away and suddenly, I really was more stable. I think I might have impressed Ryan. He seemed surprised I’d gotten it so quick and had me head out into the gym to walk around. He was pleased with my form and I walked back and forth for a bit. I pointed out where my right kneecap was rubbing and my left outside ankle bone was rubbing. He make a mark on the devices in each place in Sharpie and had me take them off. Back to solitaire.

When he came back the final time, I put them on and strutted around. Yes, the sky didn’t open with sunbeams and the angels didn’t sing, but I certainly felt far more comfortable than I thought I would. The bone pain wasn’t there. However, the left foot tendonitis was still a little bit annoying, but not as bad as without.

Ryan pointed out my ExoSyms will have a strap around the ankle for more support (these test devices didn’t). That will help, he said. Also, the ExoSyms only correct everything knee down. It will help me isolate what I need to work on knee up, such as my weak hip and core, he said. While I wait to take delivery of my devices in 16 days, I’m to work on a number of exercises he’ll send to me. I hope with 16 days of core and hip exercises I’ll be able to hit the ground running, literally, when I take delivery on July 27.

Before I took them off, Ryan had me walk across the mat I’d walked across on my first day that measured my gait and steps. He showed me how the device had corrected some of the issues already. “This shows me we are on the right track, which is really good,” Ryan said. Core strengthening will only do more.

Then, at my request, he took a video of me walking with them so I could compare with my “before” walking. I sure felt more stable, but I make a point of not watching video of myself walking. This time I needed to so I could see for myself. That’s Ryan at the beginning, telling me to “hit it.”

I’d taken the devices off just before my dad and kids arrived. They all asked to see the video. My dad remarked right away that my gait was much more stable, with less limp. Later, when I showed it to my husband, he said the same. So, for just a test device fitting, I can say that the devices will definitely be a positive improvement for me.

It sucks to now have to wait two weeks, but I’ll focus on strengthening and keep up the count down. It will be here soon! Thanks you Ryan, for your dedication to making these kinds of options for better lives available for us.

My First Visit to the Hanger Clinic: Casting

At the Hanger Clinic before stepping inside.

Today was my first of many appointments at the Hanger Clinic and it was pretty awesome to finally meet the team.

When I arrived, they photocopied my driver’s license and had me sign releases to use my image in photos and video. I had the option to opt out as well, but figured, “What the hell.”

As I waited, I encountered the ExoSym in action for the first time. A good-looking young man in great shape walked by and out the door with one on his right leg. I stared like a preschooler encountering an animated monkey for the first time. I was in awe. He had the slightest limp but strode with confidence. It made a small squeak noise in his shoe as he stepped and I wondered if that was my future – squeaky shoes. It didn’t matter. It looked cool. In fact, all the guys looked cool.

I snuck a peek at the guys standing around in the “gym” area sipping coffee (they have free coffee!). They each had one. They looked as normal as can be and comfortable in their skin. Yet I was entirely intimidated. I wanted to talk to these fellow ExoSym folks, but I suddenly couldn’t think of a thing to say. “Hi, I’m Jen and I’m getting a couple of those. What do you think about them?” seemed so lame. I was nervous, way out of my comfort zone (this talking about and admitting my need for these devices is still so new to me), and uncharacteristically shy.

My daughter chimed in, “Mommy, are those the things you’re getting?” Suddenly, it was very real. I looked at her and remembered all the things I’m excited I’ll be able to do with her once the foot pain is gone and I’ve built up my strength using the devices.

image2When my appointment time arrived I was taken back through the “gym,” where there were several hot, bad ass military guys chewing the fat, and into to Ryan Blanck’s office, the director of the clinic and the inventor of the ExoSym. As I sat waiting for him I was in awe with all the notes, thank you plaques and recognitions on his walls, highlighting the number of lives he’s made better with his work. I was in the company of good people.

July is crazy time at the clinic. They’d worked to get me in, but patience was needed as Ryan worked with a double amputee then a wounded ExoSym patient, both of which who’d flown in from far across the country.

When Ryan came in, he asked a few vitals – height, weight, age, etc. – then asked how I heard of the ExoSym (through my doctors at Harborview Medical Center in Seattle). He was surprised it wasn’t through the clubfoot Facebook group. He said he thought I might be one of the first clubfoot patients to come to the clinic that didn’t hear about it from the group. That says so much about my new tribe!

Typically he shares all kinds of information on the device, he said, but he quickly ascertained I’d done my homework. I did admit I was nervous and it took me two doctor and physical therapy appointments, and finally a meeting with my doctor and the physical therapist together to convince me to consider the ExoSym. He knew right away why. Pointing to his head he told me its normal to have to get past yourself. He told me the good news is these devices aren’t like other braces, and don’t look like them. They’re like an exo-skeleton. “They’re made for that guy to go back to work,” he said as he pointed to a photo of a combat soldier in full combat gear.

I smiled. “So if I imagine I’m more a Halo warrior than a Clubbie who was so bad off I needed help from a device?” He smiled, “Exactly.” I like that analogy.

He had me walk across a mat that recorded how I walked, stepped and moved. He showed me I step with my whole foot, not heal first (knew that) and that I list to the starboard. (Yup, know that too.) We talked about my limp and the mechanics of my body. He said if I was normal from the knees up he knew the devices would be great for me, but not knowing how the rest of my body will strengthen, he said we’ll take it one step at a time. The cost includes up to eight physical therapy appointments and we’ll use them all so we’re both happy with the results. “I certainly see you can benefit from them,” he smiled. “You will see improvement, I promise. All your nerves will turn to excitement when you try on the test device on Monday.” I have faith in my body. It’s assimilated so many times, it will do it again.

We then went in for casting. I put on these light stockings and he wrapped my feet in black plaster then left as it dried. He came back a few minutes later and cut the plaster off. My sensitive feet didn’t enjoy that feeling, and seeing a plaster cutter brought back some tummy clenching memories of my hospital visit filled childhood. I cowgirled up and pushed through, focusing on the fact these casts will be the mold for my new devices.


That was the end of the first appointment. Before I left, Ryan surprised me. He took out his phone and asked for my number. He put my cell into his phone then texted me. “There you go. Now you can reach me if you need to.” That really made me feel special at a time when I really needed to feel supported.

Ryan knew I was feeling nervous and out of my comfort zone. He assured me again that this was going to be great and he looked forward to seeing me experience the devices on Monday. I’m looking forward to it too.

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.

The Insurance Gauntlet

The ExoSym devices are sometimes covered, depending on your insurance and your location. I was completely unsure what to expect insurance-wise, but had never had insurance say no to any of the devices or procedures related to my clubfoot so far.

From the moment I contacted the Hanger Clinic, the specter of insurance hung over the whole experience. In the packet of information the clinic sent after I reached out they talk about how difficult it is to get insurance to approve the ExoSym and to be prepared to pay myself.

That said, they assured me they’d send in letters and support for the devices to the insurance company in an effort to receive pre-approval. However, without pre-approval, I needed to understand insurance may not cover it and I’d owe $18,000 at the time of delivery of the two devices.

My doctor sent in all the items the clinic requested, Ryan at the clinic wrote his own letter of support, and the Hanger Clinic sent it all in to my insurance, Premera Blue Cross, for pre-approval. Then, two weeks later I got an email from the clinic forwarding a letter from Premera stating they don’t pre-approve the devices and payment of a claim would be made based on “benefits and eligibility at the time of service.”

In the email to me the Hanger Clinic let me know I could be on the hook for the whole price now. What did I want to do?

Well, I called my insurance company in tears. Bless the customer care lady’s heart at Premera. She calmed me down and said she’d get to the bottom of it. She checked two things, 1) if the Hanger Clinic was in my service area (yes, it was), and 2) my benefits (orthotics and prosthetics are covered in full when a doctor deems them necessary).

“Honey, you’re fully covered, minus your deductible. The reason we didn’t pre-approve is because you’re already covered for these services. They don’t need pre approval.”

Cue the waterworks again. I even got the sweet customer care lady crying too, she was so happy she could help. She got me on the phone with a customer advocate who then called the clinic to let them know I was covered while I was on the line. Yay Premera and my husband’s employer for the incredible coverage!

However, before I called the insurance company, I’d called my mom who worked at a hospital as the go-between person between the hospital and insurance companies. She told me I had the right to appeal denied claims and could even have my doctor call the doctor on staff at the insurance company to work out claim payment. I’ve also seen several folks on the Adults/Teens with Clubfoot Facebook page share stories of being denied and then through appeal be able to get approval. I’m trusting my insurance company that it will be paid and hope I don’t have to go further down the appeal road when all is said and done. My family deductible is $6,000, which is already a hard pill to swallow in a year when other big ticket items with the house suddenly happened.

It is important to note, however, that the Hanger Clinic requires you to pay your remaining deductible to them upon delivery of your devices. They’ll call your insurance and determine that exact cost, but be ready to pay out some, especially if you have a high deductible plan. They did tell me they’ll accept the credit card for my HSA for the full amount on that card, then any other card for the rest. That helps!

Update on July 7: After my first visit, Ryan highly recommended I get it in writing that my insurance covers the devices. I called the insurance company back and they sent me (and faxed the clinic) a letter stating medical devices are covered. We shall see. I hope I’m not being naive, but I trust now four people at the insurance company telling me the ExoSym devices should be covered.

Determining if I’m a “Good Candidate”

Once I decided I’d move forward with getting the ExoSym devices, I reached out to the Hanger Clinic. They told me the first step was to fill out a number of forms including a questionnaire to determine if I was a good candidate for the devices. It asked things like what I could and couldn’t do, knee rotation, pain levels, past surgeries and interventions, and such.

They also asked for me to send in a video of me walking to help Ryan in his decision on my candidacy. Below is what I sent in. I was hurting that day so this really shows how I walk on the bad days. With shoes on, and my orthotics in with the lift in the right shoe, it’s not quite so bad. (Please forgive the mess in the background. House remodeling causes for stacks of stuff in the rest of the house…)

I have to admit, it was such a leap for me to decide to go for these devices, I was so worried after all that psyching myself up I’d be denied. I sat on pins and needles waiting for a response. The truth is, you don’t want to pay for these things and have them not be any help at all. It’s hard to wait for that email, but I knew if I got it there was no turning back.

Two days later, the email came: “Ryan has reviewed the questionnaire and feels you would be a good fit for the ExoSym device.”

Oh, happy day.

Then started the process of getting insurance approval.