Free The Feet (part II)

I’ve readjusted to life with an AFO, I guess. I’ve found a few positives to it too. Like having “walking shoes” and “sitting shoes.”

It may seem like every shoe loves dream but it took a little accepting from me. I hate having shoes everywhere so the fewer shoes to have around the better.

When my friend was ordained a few months ago I knew I needed to buy shoes, because I literally had nothing (and when a friend is getting ordained you make exceptions for them).

I found a pair of shoes I actual liked and didn’t worry about whether or not I could balance in them. I just made sure they fit my feet and I could get them off quickly if I did have to get someone in the event of an emergency.

They aren’t the perfect fit but they did the job and with any luck they’ll continue to do the job on future occasions (which is another requirement for me when it comes to footwear).

A common topic you’ll find around the internet is CP & footwear; in fact, there are blog devoted to it.

There are many other factors to consider besides, “do they have my size?” or “these are a nice color.”

In fact, those are often the two things at the bottom of the list of requirements.

Can I afford to buy two pairs of shoes? (Because sometimes bracing requires a bigger shoe, or your feet are literally 2 different sizes).

Can I manage to fit into one pair of shoes? (See above reasoning)

Can I modify them as much (or as little) as I need to without extra cost?

Can they last me more than 5 minutes?

Can I walk in them comfortably?

Can bracing fit in them without much added time or damage?

Can I wear them safely without added support? (Because sneakers aren’t exactly dress wear)

Do they have any potential for creating pressure wounds?

And on and on, and on……

While I may never have a “Cinderella moment” with any form of footwear I’ve learned to appreciate the “little victories” when I can get them.


Free The Feet

One of the interesting things about rebranding a blog is that you have something of a stockpile of posts to pull from, whether it be for memories, new ideas, or even reposting. I wrote the following 7 years ago, almost to the day:

-I don’t like shoes.

-I don’t like feet more than I don’t like shoes.

-My dislike for feet has nothing to do with how unattractive my feet actually are.

-My college campus was the land of flip flops, even more than most schools.

-I have a friend who promises his children won’t wear shoes until they’re at least 5, and even then not in the home.

-More than one of my friends gave up wearing shoes for Lent, and no one was fazed by it.

-I use to know someone who never wore shoes, even in the dead of winter.

-I can only wear sneakers.

-Only on rare occasions can I wear shoes that are not sneakers.

-I use to require getting a new pair of sneakers each month.

-My current shoes have lasted over 6 months surprising my exercise physiologist and new physiatrist, but for different reasons.

-My friends use to declare “free the feet” days during college.

During my last post-op visit I had several things on my mind. I’ll spare you the nitty gritty but having met with my physiatrist the day before & having opinions from the exercise physiologist weighed heavily on my mind. One of the biggest reasons I moved my Orthopedic care to Boston was that things are more comprehensive and having to coordinate my own care for the last few years had become exhausting and seemingly unnecessary. But I still have trouble letting go and not hand delivering mounds of paperwork to each doctor and/or specialist during each visit (I have printable files I regularly update as well as the “official” stuff) or putting my two cents in here and there in the form of, “Well ___________ said that_________________________ and it makes sense to me so……….”

I’m a rare crossbreed of nosy, self-controlling, snitch-of-a-sponge. But 9 times out of 10 I will deny this fact.

At my first post-op appointment, I was given a prescription for a new AFO, a “downgrade” for the one I had been wearing for the last few years. I wasn’t happy about it because (1) I actually liked the AFO I had and felt it only needed an adjustment or two (because I’m a professional after all) to be able to carry on, (2) I REALLY didn’t want a new AFO after all the work I had done. But I relented with the understanding that within a year I’d hopefully be able to rid myself of AFO(s) altogether.

“Can I stop wearing the AFO at least sometimes because….(I’ll spare you the pleading)”

“Well let’s see.” (I hop off the table take barely 2 steps) “Yeah, you’re fine. But after the Botox you’ll want to put it back on…… (tra la la)”

So I went out and bought new shoes, because an AFO can stretch out a shoe like nobody’s business. They aren’t my favorite looking but the fact that I’m wearing them AFO-less puts them at the top of the list by default.

Not really remembering that I’ve worn an AFO for years meant I was grossly under prepared in the sock department. I think I have 3 pairs that don’t come up to my knees. No matter how many I actually have it’s not nearly enough. Lucky for me my mother has an abundance of socks. Well not really, but she has a good number she doesn’t wear so I’ve become the proud owner of them, again by default.

I’ve adjusted to life without an AFO pretty easily & rather well I might add, but that all ends on Monday when I get injected with Botox.
I’m hoping going back to the AFO is only a short term deal, or else these last few weeks have been a major tease.

At least I’m not going back to lock-up. That was an experiment that I will never repeat for as long as I live, and neither will my orthotists.
For now I’ll be eagerly anticipating my next “Free The Feet” day.

*A similar version of this post was written on July 16, 2010

The Road To Recovery

More than a few years ago, and at the same time it feels like last week, I was lying in a hospital bed recovering from surgery (actually I thought I was dying but that’s a minor point at this point).

I was just beginning my road to recovery.

And having to answer the question, “Did it work” or “was it successful,” for those of your in the healthcare field.

I have to be honest. I’m never sure how to answer this question, especially since a lingering quad strain came into the picture.

Did it work? Yes.

Was it successful? Yes.

All major goals were met and there have been no complications as direct result of the surgery.

But did I get everything I wanted out of the recovery process? No.

I was warned that one of the outcomes of surgery would be uncovering weaknesses that were, in a sense, hidden by my miserable malalignment (yes that is indeed an actual medical diagnosis) and boy were they right.

Sometimes I feel like I have monoplegia instead of diplegia. Which you think would be a good thing but it’s more like my right leg feels more like an added after the fact limb (maybe like a prosthetic?).

Sometimes I feel like I have hemiplegia, because my arm is hell bent, sometimes literally, on trying to compensate for my leg.

I wish I didn’t have to stay in an AFO, never mind even go as far as to get a second one made. Sometimes I feel so defeated by this one fact alone, but it’s really just accepting reality.

I’ve had to adjust to taking prescribed medication on a daily basis. I’m amazed how hard it is to remember to keep up on refills and orders for more refills, for just one medication.

I have more trouble with some of the most basic things, like climbing stairs, kneeling, putting on my shoes easily, etc., than I did before.

But I’m not in nearly as much pain as I was pre surgery. That alone is worth its weight in gold. Yes, I do still deal with pain on a daily basis, but I rarely shrink back at just the thought of running into the grocery store for 5 minutes. I still hate going to the grocery store, but it’s a pet peeve thing.

So when people ask me if “it worked” of if I’m “better” it’s not an easy answer.

It depends on what your definition of “worked” is. Also I will never be “better,” assuming by “better” you mean “cured.” I started my life with CP & I’m going to end it with CP.

I didn’t have the recovery process I envisioned. But it could’ve been a lot worse. The surgery itself could’ve completely backfired no matter how much hard work I put into the recovery.

Although, if I’m being honest here, I do wonder what would have been possible under the original plan. Where I’d have as much PT as my body could take and my outpatient post-op care team was well coordinated as my pre-operative and hospitalization teams. I was facing an uphill battle even if I had had the best possible circumstances so when things didn’t go, and wouldn’t be going, as planned I started to panic.

The recovery process may technically be over but I’m still figuring things out, the good, the bad, the ugly, and the in-between.

Most importantly I’ve seen what it takes to get what you want. It’s not always easy but it’s worth it, one-hundred times over.

The road to recovery is a lot like closure. You want it and work towards it but it never ends up being how you pictured it so you just keep going, because there’s always more road to travel ahead.

AFO Or No?

I don’t remember getting my first AFOs. That’s how long I’ve worn at least one AFO. I’ve had periods where I’ve been completely AFO-free (high school & college mostly) but I’ve had some kind of bracing more than I’ve not had it.

Growing up coordinating my wardrobe with my AFOs was a no-brainer. I went to a Catholic school. There were no wardrobe options, unless you wanted a uniform violation. If there was one positive to wearing a uniform this is it, although I’ve never looked at gray knee socks the same way since.

Once I was freed from my uniform I stuck to pants, jeans really, even though I was out of AFOs by then. None of my campuses were ideal for shorts, for one reason or another, and I really didn’t want to deal with another “length debate,” even if public schools are more liberal with dress codes than private schools. I felt “liberated” enough in jeans and a tank top.

I owned shorts. I just never wore them. I always had at least one pair, just in case. In case of what? I’m not exactly sure, but they were there.

A few years ago I started wearing shorts again. Again I’m not exactly sure why once I was able to safely dress myself again after having surgery. I got tired of the heat. I was past being tired of people asking why I always wore pants. I thought I looked really weird with a nicely tanned upper body and a whiter-than-snow lower body. It was all very un-swimmer of me too.

Here’s the kicker, I started wearing shorts again while I wore an AFO. All the years of being pants only were during my AFO-free years.   (I’m sure it’s not unheard of, but unusual.)

Summer is the time of year when wearing any type of footwear is difficult. Throw in needing to wear an AFO (or two) and everything that that entails, and you can probably guess why “I don’t feel like wearing shoes today” is a legitimate reason to not leave the house (or is that just me).

Those of us who are fortunate enough to be able to safely ambulate with and without an AFO, even though we do (or at least should) wear one are presented with something of a unique challenge.

“To AFO or not to AFO?”

I tend to wear my AFO in unfamiliar situations or situations where it may get lost. I also wear it when I know I’ll get tired or need the extra stability. I don’t usually wear it all day long, unless I have to for some reason, because I tend to “flex/tone” out of it. I usually end up with a pretty obvious strap mark across my foot after a day of heavy wear (another reason why a wheelchair is often a smarter option).

Being that I wear a to-the-knee (or is it a below the knee) AFO on one side and an orthotic (like a shoe insert) I struggled on how to handle the socks issue. Call me vain if you wish.

I decided against wearing short socks under my AFO early on. It’s also been drilled into my head that it’s a big “no-no” in regards to skin health. Sweaty skin covered in plastic isn’t good, not to mention gross. Plus I tend to sweat a lot (in my opinion) so subjecting myself to conditions that could produce more sweat, no thanks.

I thought I’d end up wearing knee socks with shorts. I mean, I wear them almost every day anyway so it made the most sense, for 5 minutes. Have you ever seen adult knee socks? They’re either really lame or really cool, but neither case is ideal for summer wear. Also many of them are fairly thick and that brings us back to the sweat issue. I can’t afford those fancy pants socks that reduce moisture, or whatever, and even if I could afford them, they’re socks, not something I want to spend a lot of money on. Some people can afford it and want to, whatever works for you.

Also are knee socks fashionable these days? I want to say no, since you don’t see an explosion of knee sock fashion.

As funny as I thought it looked (and still do, to be honest), I settled on a short/knee sock combo. It’s not for everyone, but it’s what works best for me. Plus I can usually get two pairs (or two uses) out of one pair of ankle length socks (so I didn’t need to do more shopping!).

If you were AFOs (or one) how do you handle AFO related issues, like socks or “to wear or not to wear”, or anything else? Do you have any AFO related questions? Don’t be shy.

*A similar version of this post was written on July 15, 2014