The Difficulty of Committing to Action

Let's face it - we clubbies are for the most part stuck out here on our own. The doctors when they do pipe up are overly-hooked on surgeries that for the most part either don't work at all, or make things worse. Maybe they suggest drugs, but then they have no real idea the nature of the kind of pain we experience, so they really just suggest drugs that numb our heads and shut our mouths. Truth be told, as I have said before, when you hear those magic words, "well, we could do...", run! Because this merely means the doc ain't got the foggiest.

So we can select for palliative solutions instead, some which work better than others, but which you may have to try a great number of different things before finding the one or ones that actually work for you. Even then, they won't work perfectly, or likely for many years, and then you are back on the hunt. It gets discouraging and tiresome. When all you want is a few weeks of your life where you don't have to even think about your feet. Is that too much to ask?

So when someone makes another suggestion, you find yourself skeptical, doubtful anything will really make a difference. But the next time you find yourself crawling around the house to keep from having to stand, you get a bit motivated again. But even that can pass without any substantial action. Then there is the money issue - so many solutions cost too much, or the insurance won't pay for it, or will only pay for one your entire life. Yes, the insurance companies and schemes have their heads up their asses - we all know that. But why is it that you have to be the one to compromise, to suffer endlessly not only with pain, but with the ignorance of doctors and bureaucrats?

What it really comes down to is whether you value your own comfort more than the things that seem to block you from getting that comfort. There is always a way around the blocks, though it may entail some sacrifice of other things that you want in your life. Custom shoes and orthotics are expensive, especially when they are made by people with the right skills. And the difference in function and comfort between something made properly and something that is generic can be quite substantial. The same with other solutions - a "foot rub" is not on par with a professional massage therapist, even if it is cheaper. For us clubbies, we really do only get what we pay for, and sometimes, not even that!

But if it really matters to you that you have some years of less pain, more mobility, greater freedom, then you will find a way - to raise the money, to go around the roadblocks, to rouse from your surrender. You will put those needs at the top of your list, get creative, and get moving again. Yes, it's hard to keep trying some time. But we all have few choices - if we don't do something, nobody else will. It's really that simple.

What Doesn't Kill You....

Compassion is a tricky bit of business. For it to have its greatest value, it must be heart-felt, never self-serving. And it reaches its zenith when offered to those who wish us ill. Once for the value it extends us directly by helping free us from the attachment to the person (and the falsehoods told by them) who harms or wishes harm to us; and again for the opening it offers to that other person to reconsider their own bitterness and spite.

It is a sad statement that there are out there people who bully, humiliate, blame and laugh at others with difabilities of all kinds. This is even more sad when it comes from family and others once considered friends. To be asked to have compassion for such people often seems the height of insanity - why should we feel compassion for someone who should know better, have greater understanding, and are family on top of it all? To be honest, I am not completely sure how to answer such a question, but I do have one possible answer.

Compassion must first and foremost be about one's self - about letting go of one's own attachment to the lies another tells about one's self. When we let these sorts of hateful words alter our own equilibrium, allow ourselves to be lowered in our own eyes by the falsehoods uttered by another, we are in a sense granting that person control of our own inner peace. We therefor suffer damage not by the acts and words of the other, but by our own acceptance that those acts and words might in some sense, even if we cannot just now understand why, have real truth. Compassion therefor must first be for yourself, for your own sense of what is true and just, by not allowing those false realities to become your own. Until and unless another walks in your shoes - quite literally in the case of us clubbies - they speak from their own fears, and not from any true knowledge or wisdom.

There is an easy practice that helps with this. Whenever another speaks falsely about you - what you do or do not feel or experience without them having a clue about you, or clearly only wanting to hurt you, say first to yourself, and then to the other party, that their words are not who you are. Their words are who they are. Their words are a sign of their own fears, and you do not accept their fear.

This takes practice, yes, and sometimes will get more negatives from those same people. But sooner or later, if you continue this response, with compassion, the others will begin to realize that you are not being affected by their falsehoods, and will eventually stop this behavior. You must be patient.

And most importantly, you must be true to yourself.

My birthday present to all my clubbies:

If you are a clubby, you are already amazing. You know about struggle, about pain, about disappointment. You are already friends with hard work and sacrifice, with learning how to adjust your expectations and desires to make them manageable and realistic. But you also know how to work harder than others to make your dreams a reality. You understand the ignorance and intolerance of others, and learn early how to deal with those negative factors.

 

All of these things mean you are more than halfway to wisdom, understand the suffering of others better than most. These are the foundations of character, of resilience and courage. You know that fashion and popularity count for far less than integrity and kindness, and that joy is something that when earned is more full than when bought cheaply. You already know what matters, and know even more what does not matter.

 

You are a clubby. And that is amazing.

In Answer to: Does anyone know how to ease the pain when you have club foot on both feet when you have been walking and standing etc for so long, the next day you can't get up, walk etc cos its so sore:

OK, this is of course the main question all clubbies face. And there are many solutions, tho none is perfect - you sort of have to try various combinations until you find the one that works best for you. Remember - none are perfect. If there were a perfect remedy, I wouldn't need to do this blog!

First - you need to look at your own behavioral habits - you need to learn to obey your own "half-way point." This is the point of walking and standing where you know you are exactly halfway to the "oh, crap, am I going to have a bad day tomorrow" state. And respect that point - when you hit it, turn around right then and there, or sit yourself down and rest, with feet up if possible, to potentially - note that word - extend your halfway point further. This may or may not work - experiment to find the right point for yourself.

Second - you need the best shoes and best custom - not off-the-shelf, but actually custom-made - orthotics. These two items should matter more to you than a new car, or the latest whatever, because they are your first, and best, friends. If you have poor support and balance, that half-way point is going to be mighty short. If this doesn't make sense to you now, believe me, it will sooner or later. You will be much happier if you get the point sooner.

Third - soaks. Buy a big tub, big enough to put your feet in up to your knees. Fill it as high as you can (remember the displacement theory, unless you like a wet floor!), with as hot of water and epsom salts as you can, sit a chair in front of it, and slowly drop your feet into the tub. Don't forget to bring along a good book - you will be there until the water goes cold.

Consider elastic foot/ankle supports - see elsewhere on this blog for a link to some good styles.

Elevate your feet whenever you can - above the level of your heart. This will help reduce the inflammation. Make this a regular practice, and you will see the best benefit.

The best anti-inflammatory drug is aspirin. take enteric-coated aspirin if regular aspirin bothers your stomach. Aspirin is actually better at reducing inflammation than steroids and such. Plus, you don't need a prescription.

Massage. Make a good friend of a massage therapist, and teach them how to treat your feet the right way. Very highly recommended!

As you might notice from all of the above, the central point is to put yourself and your feet first in your life. Treat them nice, and they will give you many years. And do try to avoid having a doctor talk you into more surgery - it might work for a short time, but believe me, you will only move the pain somewhere else. Especially if they want to fuse something. I know this isn't the answer you hoped to hear, but it is an answer that is honest and founded on many, many years of experience, not just my own, but from many other clubbies. If you haven't found it yet, do join the Facebook group adults/teen with club foot, at https://www.facebook.com/groups/24892886820/?bookmark_t=group and meet hundreds of other clubbies from all over the world. Hope to see you there!

Updates, and Such...

Been gone a while, family situation. Have been occasionally over at the Facebook clubbie group, lots going on there. One of the current discussions has focused on the occasional bad apple who is eventually ejected from the group. Every community has them, even clubbies. I am more surprised there aren't more in such a disparate group, I suppose. I mean, given our increased potential for mental health issues, with all the stressors we deal with, and all. And then there's that gal in the UK that wants to become an amputee even tho she has nothing wrong with her - Munchausen's syndrome, for sure, but still, quite upsetting for the difability community already struggling just to be taken seriously.

I've been thinking about the issue of chronic pain, and how it has shaped many of my perspectives over the years. I blame no one for what I have and what I deal with, tho I do blame the medical community for ignoring us clubbies, as they also do with many of what are known as "orphan" diseases and syndromes. If there is no potential for a profit, what's the point of wasting one's time, seems to be the unacknowledged rationale. But dealing with such pain daily can make one either very crazy, or deeply philosophical - tho I am not ruling out a variable melding of the two options into some mutant third way. I seem to have opted for the deeply philosophical - most of the time, at least - and try my damnedest to find solace therein. I am successful on occasion, and can perhaps claim that has kept me out of jail thus far. Pain can make one do "funny" things, as many of us know.

I have had occasion of late to seek resources for other clubbies - doctors, orthotists, footwear, etc. I have been mildly successful for the most part. I realize that for you gals, my entreaties that you seek sturdy, well-made shoes seems antithetical to your deepest footwear desires, but I cannot in good consciousness suggest the sexier alternatives, as they simply don't work on our type of feet. What makes such shoes sexy sadly makes them both ineffective and subsequently harmful. Maybe you'll thank me later, who knows?

I again ask all clubbies visiting here to complete the survey, and to do so as completely as possible. I am working toward forming a not-for-profit research foundation, to raise money for serious research into post-club feet syndrome, and this survey will assist in making the necessary pitches for funding - we need to show numbers and data if we are to be taken seriously. I am not (currently) asking you for money, just data, as your contribution to finding real solutions to our shared situations. Step up and be counted, my Clubby's!

Well, I will get back to the on-going series on compensation and clubby pathomechanics, but I am rather slow at the moment, sort of recovering, you might say. Patience, my friends, patience.......

The "Shoe Thing" Again

I think in some ways the hardest thing for us clubbies to come to terms with is that we really can't do some things the same way non-handicapped people are able to do those same things. This doesn't mean we shouldn't still strive to do what we desire to do, but on one front in particular, we have a specially difficult time - buying shoes. We want to be able to do the same thing anyone else does - walk into the shoe store and buy that really sexy/cool/stylish pair of shoes and walk out wearing them. But - you know what's coming - we will pay a real price for doing so.

They may not have anything that actually fits both our feet, and our orthotics. They may have something that fits, but we can't wear them for more than an hour or so before our puppies are whimpering like crazy, and we never wear them enough to get our money's worth out of them. Or, we may wear them despite their lack of support, and then pay the price of days of more severe pain. And for many of us, the option of custom footwear is too expensive, too hard to find, just not stylish enough.

But there are types of footwear that can at least be modified, with rocker soles, lifts, better support, etc., that are within our price range, and maybe not too ugly. Even with that, the real problem is our self-image versus our self-comfort. That is the real battle. And all I can counsel after 60 years, and more than 30 making shoes and orthotics for people with a very wide variety of difabilities involving their feet and gait is, that beauty involves much more than your shoe style. It involves your sense of happiness, of comfort, of involvement in all the other aspects of life, outside the difability facing you daily. It is always your choice - both the shoes you choose, and the self-image you choose.

 

And yet I continue to make the case for finding and spending whatever it takes to get the right shoes for your specific feet. The way I see it now, we clubbies have only two choices for finding reasonable comfort - amputation and prosthetics, or custom shoes and orthotics. No amount of experimental surgery will make a real, long-term difference, especially fusions - they just move the problem and pain to another joint or set of joints. There are enough stories from clubbies who have gone down this road, with mostly failed experiments, many more years of pain and frustration, and perhaps eventually amputation anyway. But it isn't for every clubby, especially when we get older, where our bodies are less able to adapt to prosthetics as they would have been had we had it done earlier in life. 

 

So this leaves getting smarter about footwear and orthotics. Yes, they cost, and yes, you may have to work outside any insurance system to get what you need. But aren't you worth it? Isn't having less pain, remaining ambulatory longer, recovering faster after a long day on your feet - isn't that worth the price? Only you can answer these questions, but be sure to ask one more question - what price happiness?

Hello, Mt. View!!

OK, now I am curious. Hello, mysterious visitor from Mt. View, California! Please identify yourself! You are the closest visitor to this blog yet, and we must connect! Are you also in the Facebook adult/teens with club foot group? Stand up and be noticed!! Let's do lunch!

An Amazing Journey

Readers of this blog will remember one of my recent guest posts, done by Lacey Phipps. She is the young clubby who after years of unnecessary suffering decided to have her legs amputated, and be fitted with prosthetic legs. Well, recently, she was selected as the recipient of a new pair of prosthetics by an amazing outfit in Virginia, USA, and I feel I must help her story get wider spread, and to help others learn about the incredible people at Hattingh Incorporated dba Prosthetic Care of VA, who have been in the orthotic and prosthetic business for decades. As it says on their page, "John Hattingh CP, LCPO (SA) is an educator and leader in Prosthetics. His attitude towards his patient is "No prosthetic issue cannot be solved."

 

These amazing people paid Lacey's way from Texas, put her up at a local hotel, schlepped her around and to and from, and made and fitted her for top-notch below-the-knee prosthetics, began her rehab training, and got to know a few other clubbies by their posting Lacey's progress to all her friends and to the adult/teens with clubfoot Facebook group. To see Lacey in one of her first walking trials, look at this: Video.

I can't wait to post a video of her doing her favorite dancing. What an inspiration to clubbies everywhere!!

Go, Lacey, GO!!!

That "Hate To Get Out of Bed" Feeling

Normal logic suggests that, all else being equal (strange saying, as nothing is generally equal to anything else in this life), when your feet hurt at the end of the day, a good night's sleep will make them feel better in the morning. Hogwash. That's what I said - hogwash. Something about your feet just laying there all night seems to make them even more tender first thing in the morning. That is, if they let you get any sleep at all. So, is there any way to change this situation?

The answer to this is - sort of. There are a number of things you can do to allow your feet a better night's sleep, and to reduce the amount of inflammation during the night so that the pain is actually reduced by morning. Note I say "reduced," and not "stopped." That is because we all have somewhat different levels of pain, inflammation, and abilities to recover. Plus, the greater the amount of activities that occurred the prior day seems to play into this equation, though again, it can vary.

So, here are some tips: (The links supplied should be copied and pasted into your browser's address bar.)

• Invest in a blanket raiser. This is a simple device, sort of a frame that slips under the foot of your bed to drape the blankets over, which allows your feet to stay warm without the weight of the blankets pulling them down. One such place to see what this looks like is at http://www.toespace.com/ where you can see how simple such a device is. Those of a more enterprising bent can easily make their own.

• Consider elevating your legs at night. The simplest solution is some large pillows at the end of the bed, but you can also acquire a large foam wedge. The idea is to get your legs above the level of your heart. This will help reduce edema - inflammation - significantly. If your legs have the tendency to fall outward, then simply place a couple of smaller pillows under the outsides of your upper legs. This will reduce pressure on the femoral head and the hip joints. Here is a link to one example (there are many places to buy these - this is not an endorsement of this specific seller): http://www.makemeheal.com/mmh/product.do?id=10052

• Ice packs - use ice packs or wraps for at least twenty minutes before going to bed. This is another way to get the inflammation down. Here is a link to a page with many examples of the ice wraps available: http://www.amazon.com/s/?ie=UTF8&keywords=ice+packs+for+feet&tag=googhydr-20&index=aps&hvadid=1099039481&hvpos=1t2&hvexid=&hvnetw=g&hvrand=18577333431008496381&hvpone=&hvptwo=&hvqmt=b&hvdev=c&ref=pd_sl_3bblda0974_b

• Take some aspirin before bed. If regular aspirin is too much for your stomach - maybe you have an ulcer, in which case regular aspirin is NOT a good idea - you can take what is called enteric-coated aspirin. This type of aspirin doesn't dissolve in your stomach, but in your intestines, so is safe for those who have issues with aspirin. Aspirin is one of the very best medications for the reduction of inflammation, better than many prescription NSAIDs (non-steroidal anti-inflammatory drugs). Cheaper, too! 

• Massage your feet. Use a nice lotion, maybe even something like Tiger Balm, or any other deep-heating cream or lotion. Stretch the joints of your feet slowly and as fully as you can. Move the joint to the end of it's range of motion and hold it for a few minutes before releasing it. Where possible, move each joint in both directions, to help open the joint spaces temporarily, thus giving them a little break. Be nice to yourself, especially to your feet! You deserve it! Some samples of good lotions and creams can be found here: http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=deep-heating+pain+relief+creams+and+lotions&rh=i%3Aaps%2Ck%3Adeep-heating+pain+relief+creams+and+lotions

No one of the above suggestions will do the trick - you really need to try them all, until you find the right combination that works for you. But I am convinced that it is possible to wake up with your feet feeling a lot better than when you laid down to go to bed last night. Develop your own ritual. Be nice to your feet! And they will thank you for it!

You Body is a Four-Story Wonder!

You probably, like most people, see your body as a single item - your body, and nothing else. But modern science (ain't it a grand thing?) will tell you that in fact, your body isn't even all yours. We are home to, and most likely fully dependent for survival on, hundreds of species of other beings that perform very critical tasks on our daily behalf. Bacteria. That's what I'm talking about! No, actually, I won't be talking about bacteria - that's just a ploy to get you to read further.

 

What I AM talking about are the four levels of your body that we use to describe how you compensate when your table, er, supports, well, that is, your legs are not of equal length. Like the table I spoke of in the last post, your two legs have to perform in a similar fashion as that table - they need to provide equivalent stability in as bi-lateral a fashion as possible. When they fail to do so, the body becomes imbalanced, and force the body to begin compensating for that imbalance.

 

To describe that compensation, and to aid in determining how to respond to effectively change that compensation back to a more normal bi-lateral state, we need effective language and ideas in order to communicate what is wrong, where it is wrong, and what to do to respond to the problem. This is no different than any other scientific or technical issue - without good, descriptive, and accurate language, we cannot effectively resolve the problems that crop up.

 

We begin by dividing the body into four segments - primary - from the floor to the knees; secondary - floor to hips; tertiary - floor to shoulders; and quaternary - floor to the top of the head. As the body is essentially a structural chain, changes made at lower levels of that chain promulgate proximally - that is, from the initial location of the imbalance upward toward the center of gravity. Because we humans - as well as every other being and object on Earth - reside at the bottom of a gravity well, anything that alters our balance alters how we react and operate in relationship to the direction of gravity. This is a very important concept for the purposes of our understanding of bi-lateral biomechanics, just as it is for that table.

 

So when we talk about how a given body compensates for an imbalance in their bi-lateral functioning, we describe where those compensations occur, and to what degree they are occurring, by indicating to and at what levels we see compensatory changes. If, for example, we see a simple change where the foot on the apparent short-limb side of the body begin to walk more on the ball of the foot, raising the heel more rapidly on the affected side, but no change in the levels of the hips or shoulders, we would describe this as a primary compensation. And for most primary compensations, the body often maintains only that level of compensatory involvement for many years, sometimes for life, without eventually moving to another level of compensation.

 

But there is no guarantee of this. Our bodies are being acted upon by forces both external and internal. Gravity we cannot resist, but that is also true for many of the internal forces at work. One example is the state of any one individual's ligaments. Not everyone has the same tone to their ligaments - some of us have very tight ligaments, some fairly middle-of-the-road ligaments, and still others have a very loose ligamentous tonality. The term "ligamentous laxity" properly describes what is more commonly known as "double-jointedness." It merely means that such an individual's ligaments are so loose as to permit their joints a far larger range of motion. Such people are sometimes more prone to injury, but they are also prone to developing more and far more problematic compensatory mechanics. We will touch on this more in future installments here.

 

For now, just remember that your body works to manage compensatory demands by adjusting itself across these four levels. Note that each level incorporates all the levels distal, or below that level, so Secondary also encompasses Primary, and so on. This, too, will be important to recall in our other installments.

 

Next time: why you can't resist my compensatory charms!