The Truth About Talipes

Moving To New Digs

2014-01-05T14:13:00.000-08:00

Well, as promised, we are moving this blog to a new home over on Wordpress. Blogger-Blogspot has fallen into grave disrepair, with many components getting now real support from Google any longer, or at least that is the experience we are having, so in order to better serve you, a new home is required. This will be a slow process - all the old posts have to be moved over to the new platform; all the features need to be replicated, and everyone needs to be informed that there is a new address.

So, our new address is:

http://truthabouttalipes.wordpress.com

The current design is likely to change, but this is a simple thing to do these days, so once I get all the content and features moved over, the design will be finalized. This blog at this address will remain operational for a few years, just to alert everyone that we have moved, but no new content will be posted here.

So, come over to our new home, and be a part of the Clubby Community!

Happy Holidays To All

2013-12-19T10:53:00.001-08:00

Well, here we are - another year down the tubes, way too much pain for all my clubby brethren, and still fighting the good fight against the forces of ignorance and self-delusion. T'was ever thus, I suppose. But all the mishegas aside, we keep on keeping on, considering the few options available. But we have each other, this growing clubby community, and for that, I am very thankful.

I wish one and all a much better year, less pain, better solutions, greater understanding, and more refusing to suffer the fools who use stupid words like "cured", "corrected", and "fixed". May you all find better empathy from family and friends, nicer shoes, and more joy to look forward to.

A Merry, Happy, Joyous, Silly, Fun-filled, Crazy, Off-the-Charts Good Time to one and all!!

What Works For You: Lotions, Creams, Unguents, Etc.

2013-11-22T11:18:00.003-08:00

So, you get home, take off those shoes, and reach for the muscle cream to try and regain ownership of your feet. For some, it's the tingly stuff, and for others, it's the deep heating effect. How about for you?

I am asking all of you for your favorite brand. Ben Gay, or Tiger Balm? Mentholatum Deep Heat, or ______________ fill in the blank! Let us know what you have tried, and what you have found works best, and why. What kind of applicator - roll-on, or just plain cream? Perhaps a spray-on works for you. Here is a chance to share your experience with other clubbies everywhere!

So come on - slather it on!!

It's Not Always About The Feet

2013-11-19T14:51:00.003-08:00

The real problem with having a part of your body in constant pain is how it affects your perspective daily. I am pretty sure anyone who lives with post-club feet, as with other conditions, does not at least occasionally say, "what I wouldn't do to have an entire day where I don't think about (insert body part or condition here.)" It seems like the sort of privilege we will never be afforded. Even small, brief respites are worth pursuing, because it's not like we have a lot of readily-available choices. It becomes as much a mental and emotional weight to shoulder as it is a physical burden.

But when we see others who complain about truly inconsequential things, its hard for us not to scratch our heads. When someone has real hurdles, on the other hand, many of us find ourselves cheering for their battles, because we know them from our own experiences. The truth is, however, that everyone has hurdles, everyone has something that holds them back, obsesses them, keeps them up from time to time wishing for something different. And while "something different" might seem like a great deal if you could get it, it is usually the case that it doesn't really change anything.

I suspect this is because we learn how to be who and what we are over such a slow and convoluted pathway that even if we win the lottery and find ourselves suddenly rich, our basic ways of being in and seeing ourselves acting in the world don't change as easily as that. What made us miserable before will still do so, and what made our struggles take the shape they have will remain stubbornly fixed in place. How we dealt with pain will always be the way we do so, unless we pursue real change, the kind that matters and lasts. I am speaking of the change we can make in our own minds.

There is a saying that has somehow emerged out of the modern understanding of pain, that it is "all in our minds." This is only true to the extent that our minds are where the pain registers. That is, where the signal is sent and processed, but not where it originates, and too often, endlessly repeats from that location. For us, it emanates from our feet and legs. So without changing the points and sources of our pain, little we do to alter those receptors will actually alter the fact and agony of our pain. That is why most pain medications are so ineffectual for chronic pain - because they are designed to have their impact on the pain centers in the brain, and do absolutely nothing for the sources of those damaging signals. That is why I always have such a negative reaction when I hear someone use this silly saying - especially a doctor. because it betrays the speaker's absolute ignorance of the true nature of chronic pain.

But there are some things we can do on our own to affect a reduction at least in those receptors in the brain, and they don't always require pharmaceuticals. Things like biofeedback, and guided imagery have been shown to bring sometimes significant levels of pain reduction. The trick I like to use, when I have the presence of mind to do so, is what I have come to call the tropical island gambit. It's quite simple, but takes practice to see the results. It goes like this:

Find a photograph in a travel magazine, say, national Geographic, of a tropical island with a mountain in the center. Even better if there is a lovely tropical lagoon in the foreground, complete with sandy beach. Now, look at the photo and imagine you are reclining there on that beach, and then, picture your pain as having taken a walk around the island and is now somewhere on the other side of that mountain. Over time, you will be able to sustain this image for longer periods, and the effect will become more evident. There is you - on the beach, and there is your pain, off by itself doing who cares what. I often find this effective when I realize I am overly focused on my pain, especially just after I take my shoes off at the end of my work day.

Like I said, it takes practice. But we clubbies have all the time in the world. Because we know too well - these feet are not going to be changing anytime soon.

The Difficult Path to Joy

2013-10-24T09:00:00.002-07:00

I was having a talk with my therapist recently, and began talking about dealing with pain over so many years. I told her about being a kid and going through a rather lengthy "why me" phase, and how that same refrain still crops up from time to time. It is of course a reasonable thing to ask when you are a child, and you get stupid answers from adults like, "it is God's plan for you," which is patently absurd, even to a kid, and which in my case caused any such belief system to fully evaporate. And the answers from doctors were even less illuminating. But pointing out the idiocy of the question does not address the rationale for asking it.

There is no "why" to it, of course. Luck of the draw, and I am always aware I am not the only person who drew a bad hand. Here I am, this is it, and I have to figure it out. The problem with getting stuck in the "why" question is that it just delays learning how to make better lemonade. But that's not the point of this particular ramble.

It is easy to focus on the pain - it just keeps on giving, you might say. It is not like I have to go looking for it. And that makes it easy to let pain, and the depression that often accompanies it to overshadow joy. But if I stop and listen, and look closely, I can see it is there, has, in some sense, always been present. I use the analogy of a bookshelf.

You can see all those books, resting, showing off their titles. Each book is one of the stories of pain, fear, fragility, loneliness, rejection, humiliation, etc., etc. But each book has a space between itself and the book next door. I realized that the joy in my life resides in those spaces that surround all those books, all the stories that make up my life. It is what helps keep each story separate, prevents them from running together. It also makes up the substance of the shelves, that hold all those stories. Joy is the differentiators, the accent marks, the atmosphere that cradles the story of my life.

Pain, it is now clear to me, is only one part of the story. And that knowledge is yet another cause for joy.

In French:

J'ai eu une conversation avec mon thérapeute récemment , et j'ai commencé à parler de traitement de la douleur pendant de si nombreuses années. Je lui ai parlé d'être un enfant et en passant par un assez long " pourquoi moi " phase , et comment ce même refrain cultures encore de temps en temps. Il est bien sûr tout à fait raisonnable de demander quand vous êtes un enfant , et vous obtenez des réponses stupides des adultes comme, « c'est le plan de Dieu pour vous », ce qui est absurde , même pour un enfant, et qui dans mon cas a provoqué une tel système de croyance s'évaporer complètement . Et les réponses des médecins étaient encore moins éclairante. Mais en soulignant l'idiotie de la question ne porte pas sur le bien-fondé de l'avoir posée .

Il n'ya pas de «pourquoi» à lui, bien sûr . La chance du tirage au sort , et je suis toujours conscient que je ne suis pas la seule personne qui a une mauvaise main . Je suis là, ça y est, et je dois le comprendre. Le problème avec s'enliser dans la question «pourquoi» , c'est qu'il vient retards apprendre à faire mieux limonade. Mais ce n'est pas le but de cette randonnée particulière.

Il est facile de se concentrer sur la douleur - il ne cesse de donner, me direz-vous . Ce n'est pas comme si je devais aller le chercher . Et qui le rend facile de laisser la douleur et la dépression qui accompagne souvent à la joie d' éclipser . Mais si je m'arrête et j'écoute et regarde de près , je peux voir qu'il est là, présente, dans un certain sens, toujours été présente . J'utilise l'analogie d'une étagère.

Vous pouvez voir tous ces livres , de repos , exhibant leurs titres. Chaque livre est l'une des histoires de douleur, la peur , la fragilité , la solitude , le rejet , l'humiliation, etc , etc, mais chaque livre a un espace entre lui-même et le livre à côté. J'ai réalisé que la joie dans ma vie réside dans ces espaces qui entourent tous ces livres , toutes les histoires qui composent ma vie. C'est ce qui permet de garder chaque histoire distincte , les empêche de courir ensemble . Il fait également le contenu des étagères, qui détiennent toutes ces histoires . La joie est différenciateurs , les marques d'accent , l'atmosphère qui berce l'histoire de ma vie.

La douleur , il est maintenant clair pour moi , n'est qu'une partie de l'histoire. Et cette connaissance est encore une autre raison de se réjouir .

In Italian:

Ho avuto un colloquio con il mio terapista di recente, e cominciò a parlare di affrontare il dolore in tanti anni . Le ho detto di essere un bambino e sta attraversando un piuttosto lungo " perché proprio a me " fase , e come questo stesso ritornello ancora affiora di tanto in tanto . Naturalmente è una cosa ragionevole da chiedere quando sei un bambino , e si ottiene risposte stupide da adulti come ", è il piano di Dio per te ", che è palesemente assurdo , anche ad un bambino , e che nel mio caso ha causato alcun tale sistema di credenze di evaporare completamente . E le risposte da medici erano ancora meno illuminante. Ma sottolineando l'idiozia della questione non affronta le motivazioni per chiedere esso.

Non c'è un " perché " ad esso , naturalmente . La fortuna del sorteggio , e io sono sempre consapevole che non sono l'unica persona che ha una brutta mano . Eccomi qui, questo è, e devo capirlo. Il problema di rimanere bloccati nel "perché" questione è che solo i ritardi imparare a fare meglio limonata . Ma non è questo il punto di questa particolare escursione .

E ' facile concentrarsi sul dolore - solo mantiene sul dare , si potrebbe dire. Non è come devo andare a cercarla. E che lo rende facile da lasciare il dolore , e la depressione che spesso accompagna alla gioia passare in secondo piano . Ma se mi fermo e ascolto , e guarda da vicino, posso vedere che è lì , ha , in un certo senso , sempre presente . Io uso l'analogia di una libreria.

Potete vedere tutti quei libri , di riposo , in mostra i loro titoli . Ogni libro è una delle storie di dolore , paura, fragilità, solitudine, il rifiuto , l'umiliazione, ecc, ecc , ma ogni libro ha uno spazio tra sé e la porta prossimo libro . Mi resi conto che la gioia nella mia vita risiede in quegli spazi che circondano tutti quei libri , tutte le storie che compongono la mia vita . E 'ciò che aiuta a mantenere ogni storia a parte , impedisce loro di correre insieme . E 'anche la sostanza delle mensole , che contengono tutte quelle storie . La gioia è la differenziazione , gli accenti , l'atmosfera che culla la storia della mia vita .

Il dolore , è ormai chiaro per me , è solo una parte della storia . E che la conoscenza è ancora un altro motivo di gioia .

In Croatian:

Imala sam razgovor s mojim terapeut nedavno , i počeo govoriti o rješavanju boli tijekom toliko godina . Rekao sam joj o tome dadijete i prolazi krozprilično dugotrajan " zašto ja " fazi , i kako taj isti pripjev još uvijek se pojavi s vremena na vrijeme . To je, naravno,razumno pitati kada stedijete , a vi dobiti glupe odgovore od odraslih kao što su , " to je Božji plan za tebe ", što je očito apsurdno , čak i dijete , a koje je u mom slučaju izazvalo bilo kao sustav vjerovanja u potpunosti ispari . A odgovore od liječnika bili su još manje poučan. No, istaknuvši idiotizam u pitanje ne rješava razloge za to pita .

Nema " zašto " na njega , naravno . Sreća u izvlačenju , a ja sam uvijek svjesna da nisamjedina osoba koja je nacrtao lošu ruku . Ovdje sam , to je to , i moram to shvatiti . Problem zapinjanja u "zašto", pitanje je da je to samo odgoda učenje kako bi bolje limunadu . No, to nijetočka ovom udaljavati .

To je lako da se usredotočite na bol - to samo čuva na davanje , što bi mogao reći . To nije kao moram ići u potrazi za njega . I , što ga čini lako pustiti bol , i depresiju koja ga često prati zasjeniti radost . Ali , ako sam prestati i slušati , a malo bolje pogledate , vidim da je tamo, je , u nekom smislu , uvijek je bio prisutan . Ja koristiti analogiju policu za knjige .

Možete vidjeti sve te knjige , odmara , iskažu svoje naslove . Svaka knjiga je jedna od priča o boli , strah, krhkost , osamljenost, odbacivanje, ponižavanje , itd. , itd. Ali svaka knjiga ima prostora između sebe i knjige uz kuću . Shvatio sam da jeradost u mom životu boravi u tim prostorima koji okružuju sve te knjige , sve priče koje čine moj život . To je ono što pomaže da svaka priča odvojeno , sprečava ih izvodi zajedno . Također se čini suštinu policama , koji drže sve one priče . Radost je differentiators , i akcenta ,atmosfera koja kolijevke Priča o mom životu .

Bol , to je sada jasno da mi , samo je jedan dio priče . I to znanje je još jedan razlog za radost .

In German:

Ich hatte ein Gespräch mit meiner Therapeutin vor kurzem, und redeten über den Umgang mit Schmerz über so viele Jahre. Ich erzählte ihr , ein Kind und gehen durch eine ziemlich lange " why me "-Phase , und wie das gleiche Refrain noch taucht von Zeit zu Zeit . Es ist natürlich eine vernünftige Sache zu fragen, wenn Sie ein Kind sind , und Sie erhalten dumme Antworten von Erwachsenen wie, " es ist Gottes Plan für Sie ", die absurd ist , sogar zu einem Kind, und was in meinem Fall verursacht eine solchen Glauben System vollständig verdampfen. Und die Antworten von Ärzten waren sogar weniger aufschlussreich. Aber den Hinweis auf die Idiotie der Frage bezieht sich nicht auf die Gründe für die Nachfrage es .

Es gibt kein " warum ", um es , natürlich. Glück der Auslosung , und ich bin immer bewusst, dass ich bin nicht die einzige Person, die eine schlechte Hand zog . Hier bin ich, das ist es , und ich habe , um es herauszufinden . Das Problem mit dem Anfang in der "Warum "-Frage stecken ist, dass es nur Verzögerungen lernen, wie man besser Limonade zu machen. Aber das ist nicht der Sinn dieser besonderen Wanderung .

Es ist leicht, auf den Schmerz konzentrieren - es hält auf geben , könnte man sagen. Es ist nicht, wie ich auf die Suche nach ihm haben. Und das macht es leicht zu Schmerzen und die Depression , die oft begleitet sie überschatten Freude lassen . Aber wenn ich stoppen und zu hören, und genau hinsehen , kann ich sehen, dass es dort ist , in gewissem Sinne , immer präsent . Ich benutze die Analogie eines Bücherregals .

Sie können alle diese Bücher , stillstehen, showing off ihre Titel . Jedes Buch ist eine der Geschichten von Schmerz, Angst , Zerbrechlichkeit, Einsamkeit, Zurückweisung , Demütigung , etc., etc. Aber jedes Buch hat einen Raum zwischen sich und dem Buch von nebenan. Ich erkannte, dass die Freude in meinem Leben in diesen Räumen , die all diese Bücher, all die Geschichten , aus denen sich mein Leben umgeben befindet. Es ist, was hilft, jede Geschichte separaten , verhindert, dass sie zusammen laufen . Es macht auch die Substanz der Regale , die all diese Geschichten zu halten. Joy ist die Unterscheidungsmerkmale , die Akzente , die Atmosphäre, die Wiege der Geschichte meines Lebens .

Schmerz, es ist mir nun klar , ist nur ein Teil der Geschichte. Und das Wissen ist noch ein weiterer Grund zur Freude .

In Danish:

Jeg havde en snak med min terapeut for nylig, og begyndte at tale om at håndtere smerte over så mange år. Jeg fortalte hende om at være barn og gå gennem en temmelig lang " hvorfor mig " fase og hvordan den samme omkvæd stadig dukker op fra tid til anden . Det er naturligvis en rimelig ting at spørge , når du er et barn , og du får dumme svar fra voksne som, " det er Guds plan for dig ", som er absurd , selv for et barn , og som i mit tilfælde medført sådan trossystem til fuldt fordampe . Og svarene fra lægerne var endnu mindre oplysende. Men påpege idioti af spørgsmålet omhandler ikke begrundelsen for at spørge det.

Der er ingen " hvorfor" til det, selvfølgelig . Held i lodtrækningen , og jeg er altid klar Jeg er ikke den eneste person, der trak en dårlig hånd . Her er jeg , det er det, og jeg er nødt til at regne det ud. Problemet med at sidde fast i "hvorfor" spørgsmål er, at det bare forsinkelser lære at gøre bedre limonade. Men det er ikke pointen med denne særlige vandretur .

Det er let at fokusere på smerten - det bare holder på at give , kan man sige . Det er ikke ligesom jeg er nødt til at gå på udkig efter det. Og det gør det nemt at lade smerte og depression , der ofte ledsager det overskygge glæde. Men hvis jeg stoppe op og lytte , og ser nøje efter, kan jeg se det er der, har i en vis forstand altid været til stede . Jeg bruger analogien med en bogreol .

Du kan se alle de bøger , hvile, vise deres titler. Hver bog er en af de historier om smerte , frygt, skrøbelighed , ensomhed , afvisning, ydmygelse osv. osv. Men hver bog har et mellemrum mellem sig selv og bogen ved siden af. Jeg indså, at glæden i mit liv ligger i de rum , der omgiver alle de bøger , alle de historier, der udgør mit liv. Det er, hvad der hjælper med at holde hver historie adskilt, forhindrer dem i at køre sammen. Det gør også op indholdet af hylderne , der holder alle disse historier. Joy er differentiators , de accenttegn , den atmosfære, der vugger historien om mit liv.

Smerte , er det nu klart for mig , er kun en del af historien. Og at viden er endnu en årsag til glæde.

In Arabic:

أول هو وجود حديث مع الطبيب المعالج بلدي مؤخرا ، و بدأ يتحدث عن التعامل مع الألم على مدى سنوات عديدة . قلت لها عن كونه طفل و يمر مطولة نوعا ما " لماذا لي " المرحلة ، وكيف أن نفس الامتناع تزال تصل المحاصيل من وقت لآخر . ذلك هو بالطبع شيء المعقول ان نسأل عندما كنت طفلا ، وتحصل على أجوبة غبي من البالغين مثل ، " هو خطة الله بالنسبة لك "، والذي هو محض سخف ، حتى لطفل ، و التي في حالتي تسبب أي مثل هذا النظام المعتقد لتتبخر تماما . و كانت الإجابة من الأطباء حتى أقل المضيئة . ولكن مشيرا إلى عته في هذه المسألة لا تعالج الأساس المنطقي ل طلب ذلك.

ليس هناك " لماذا " ل أنها ، بطبيعة الحال. الحظ في القرعة ، و أنا على علم دائما انني لست الشخص الوحيد الذي تعادل من ناحية سيئة . أنا هنا ، وهذا هو ، وأنا يجب أن الرقم بها . المشكلة مع أن يعلقوا في "لماذا" السؤال هو أنه مجرد التأخير تعلم كيفية جعل أفضل عصير الليمون . ولكن هذا ليس نقطة من هذا نزهة خاصة .فمن السهل أن نركز على الألم - أنها تحتفظ فقط على العطاء، يجب ان تقول . انها ليست مثل ولدي للذهاب تبحث عن ذلك. وهذا يجعل من السهل على تتيح الألم ، و الاكتئاب التي غالبا ما ترافق ذلك إلى الفرح تلقي بظلالها . ولكن إذا كنت التوقف والاستماع ، و تبحث عن كثب، أستطيع أن أرى أنه هناك ، و ، بمعنى ما ، كان دائما حاضرا . أنا استخدم هذا التشبيه من رف الكتب .

يمكنك ان ترى كل تلك الكتب ، ويستريح ، والرياء عناوينها. كل الكتاب هو واحد من قصص الألم ، والخوف ، وهشاشة ، والشعور بالوحدة والرفض و الإذلال ، الخ، الخ ولكن كل كتاب يحتوي على مساحة بينها وبين البيت المجاور الكتاب. أدركت أن الفرح في حياتي يتواجد في تلك المساحات التي تحيط بكل تلك الكتب ، كل القصص التي تشكل حياتي . وهو ما يساعد على الحفاظ على كل قصة منفصلة ، تمنعهم من الترشح معا . كما أنها تشكل جوهر الرفوف، و التي تحمل كل تلك القصص . الفرح هو التفاضل ، و علامات التشكيل ، والغلاف الجوي أن حمالات قصة حياتي .

الألم ، فمن الآن واضحا بالنسبة لي ، هو جزء واحد فقط من القصة . و أن المعرفة هي سببا آخر للفرح .

In Chinese:

最近我有一个跟我的治疗师，并开始谈论处理这么多年的痛苦。我告诉她是一个孩子，经历一个相当漫长的“为什么是我”的阶段，同样的副歌如何仍然不时的作物。这是当然问当您是一个孩子时，一个合理的事情，和你成人喜欢愚蠢的答案， “这是神的计划，为你， ”这显然是荒谬的，甚至一个孩子，和它在我的情况下，造成的任何这种信仰体系完全蒸发。医生的答案甚至更少照明。但指出白痴的问题不解决要求的理由。

有没有“为什么” ，当然。抽签运气，我总是知道我不是唯一的人谁画了一只坏手。我在这里，这是它，我必须弄明白。 “为什么”的问题上陷入的问题是，它只是拖延学习如何更好的柠檬水。但是，这不是这个特定的絮絮叨叨的地步。这是很容易把重点放在疼痛 - 它只是不断给，你可能会说。这是不是像我不得不去寻找它。这使得它容易让疼痛，抑郁症，往往伴随着它掩盖喜悦。但是，如果我停下来听，仔细一看，我可以看到它的存在，在某种意义上，一直存在。我用比喻书架。

你可以看到所有那些书，休息，炫耀他们的头衔。每本书是一个故事的痛苦，恐惧，脆弱，孤独，排斥，侮辱，等等，等等。但是每本书本身和书隔壁之间有一个空格。我意识到，我生命中的喜悦驻留在那些空间环绕所有那些书，所有的故事，让我的生命。它是有助于保持每个故事独立，阻止它们运行起来。这也使得货架上，有所有这些故事的实质。 Joy是与众不同，重音符号，摇篮的故事，我的生活气氛。

疼痛，现在是很清楚，我的故事只是其中的一部分。认为知识是喜悦的又一原因。

If anyone would like a different translation, let me know! I am using Google Translate, so I apologize for any errors - I do not actually know these languages, but want to try and make the blog more accessible to clubbies everywhere.

Big Changes Coming!

2013-10-15T16:20:00.000-07:00

Somebody from Boyup Brook, Australia just viewed this blog for the first time, and that made me realize just how wide-spread we clubby's are. I mean, isn't that pretty near the ends of the Earth, after all? Which, considering the Web is less than 20 years old (or so), shows just how far we've come, and how far we still have to go. I mean - we can FIND each other, but we still can't afford to hop a bus and have a pint with just any old clubby, now, can we?

So, between this blog, and the FB group, we are really just getting started - sharing our stories, resources, pains, ideas, solutions, fears, triumphs, recipes, jokes, and despairs - and anything new we can add to our repertoire is pretty much a good thing. And with the newest voices now speaking of a more radical solution - amputation and prosthetics - our futures offer us more choices than we have heretofore had available.

So, it is with this and many other bits of change I have been seeing over the past year or so that I am announcing some significant changes will be coming to this blog. The first big change is that I will begin sharing the editorial duties (and the writing duties, I should add) with Lacey Phelps, who will bring a new voice, and an even newer experience, to all the clubbies who read this blog, whether they reside in Kansas City, or Boyup Brook. This change will begin soon, so stay tuned!

And along with Lacey coming on board, the name of the blog will also change to reflect this new approach. Still mulling over the final name, but you will be informed in due time! We will institute the new name and format as soon as we finish the most difficult change - to a new platform. The Blogger platform has proven too limiting, and occasionally buggy, so I am going to move the blog to a Wordpress platform. This will also enable the inclusion of a storefront as a part of the blog. The reason for this will be to start raising money for the non-profit research foundation I have spoken about here. The products we will focus on will be oriented toward foot care - products and services, I should say, because I also want to help direct people to the best resources in their area, or at least as close as they can get. Sadly, this still means some folks will have to travel, but if I can help shorten the decision time and help anyone spend less expense chasing after less-than-ideal solutions, well, I think that will be worthwhile.

So, if you have any products you like to buy for your foot care, let me know, and I will try to target such products. And stay tuned - changes are a'comin'!!

More Thoughts on Pain, and Dealing With It

2013-10-08T21:41:00.002-07:00

Pain, especially chronic pain, is fraught with confusion, misunderstanding, and still limited understanding on the part of the medical field. Yes, we know that pain signals emanate from the part of the body where the trauma has occurred/is occurring. And we know that the signals are sent to the brain, which is where we get to obsess over them. Most pain medications try to suppress the pain signals in the brain, despite the pain's locale being elsewhere. Locally-focused solutions, such as patches, creams, stim devices all have shown limited efficacy, especially with chronic pain. And even more so with chronic pain that is the result of continuing local trauma and inflammation, such as we clubbies experience.

But some of the confusion around pain comes as much from how we talk about it as how it actually works in the body. For example, we speak of "dealing" with pain, "relieving" pain, and "stopping" pain, as though these were all synonymous. In actuality, these are three completely different issues. Stopping pain means, or at least should mean, the resolution of the condition causing the pain in the first place. Sadly, we tend too often to "stop" pain by deadening the parts of the brain processing the signals, usually through the use of addictive opiods, rather than trying to actually resolve the causes therein. Yet we at least colloquially use this term as a statement of desire - "please make the pain stop." Sadly, masking the pain does not halt the factors which cause the pain to persist. Arthritic joints continue their damaging decline, even if the mind is temporarily oblivious to the fact.

Relieving the pain is close to "stopping" the pain, but allows for more nuance. If one can achieve a sizable reduction in the degree and duration of the pain, making it more tolerable, this can count toward relief. The advantage of this term to describe the desired result is that is opens the door to more solutions than "stopping" pain affords one. Solutions other than opiod addiction are more desirable, less damaging themselves, and easier to access most of the time, as many such solutions do not require a prescription (though a few do, FYI). Salves, massage, compression socks, OTC pain meds, footwear and orthotic solutions - these and more can be used as your arsenal aimed at relieving the pain to manageable levels. It takes more trial and error to get the right combination that works for any given person, but in the instance of chronic pain, it is the more useful term.

The third term, "dealing" with pain, includes "relieving", but adds another aspect to the mix. Dealing means finding ways mentally and emotionally to cope not only with the physical impacts of chronic pain, but with the emotional and psychological ones, as well. Short term acute pain does not impact the mental state to the same degree or in the same manner as does chronic, unrelenting pain. We live with this, whether we want to or not, so we need mechanisms to aid in how we face all of these aspects of our pain. Mental tricks like compartmentalization, distraction, biofeedback for pain management, hypnosis all can have their place in helping us deal with the pain. Making psychological therapy a part of one's life is also highly beneficial - we can easily fall into depression, feel isolated, rejected, resentful of the ease with which others get to live compared to ourselves. Add these to having to also deal with the physical impacts, the disappointments we experience with the medical profession, family, friends, strangers who are sometimes merely ignorant, and sometimes outright cruel in their ignorance, and it becomes clear tat we have a significant load to bear. Trying to do this alone is a recipe for disaster.

Dealing also means adjusting our life styles to make the management of our pain more realistic. Finding our "half-way point" for when we go outside, on walks, to the store, to events, can benefit us by acknowledging the actual distances we can handle in a day without having to spend days or longer recovering. Learning to sit as often as possible when out and about also serves us better than trying to do the same thing your able-bodied family or friends want you to do, which may also require you to say no a little more often than yes. Developing techniques to educate others about your limitations is an essential skill - you should not allow others to dictate, by whatever means they may do so, how much pain you should have to endure to please their tender sensibilities. You need to take care of yourself, first!

In each of these ways of speaking about pain, we need to be clear of their distinctions, because we run the risk of failing to see how, say focusing on one such term, may hide from sight other ways of approaching the problem. We need to see with clarity the issue of chronic pain from every angle, so that we open up as many options for solutions as possible. The reality is, nothing is going to "cure," Correct," or "fix" our feet, and the odds currently of medical science even addressing our particular issues are frankly so low as to be non-existent. So, we either figure as much of this out for ourselves as we can, or fall into victim mode and lose out on a better quality of life.

Will it still hurt? Oh, yes. But we can mitigate the severity, and we can still find ways to enjoy our lives. But we are limited, you say, and of course, that is true. But as true is the fact that everyone is limited in their own fashion as to what they can achieve in their life. We just happen to know more clearly than most where our limit is situated. And once you develop the skills to deal effectively with pain management, you will feel more in control of your own life.

Which, if you think about it, gives us a bit of an edge!

Demand Some Truth!

2013-09-23T15:50:00.001-07:00

"Cured." "Fixed." "Corrected." The three dirtiest words ever for a clubby. Lies, damned lies, evil lies. "Just want to help the parents feel confident." Right. So confident that they later refuse to believe their own child when the child starts really feeling the reality of their club feet. So confident they never question what the doctors have to say until the damage has been done. "Don't worry, Mrs. and Mr. Smith, we know what's best for your child." Easy for them to say - by the time the truth comes out, the statute of limitations has expired. Then Johnny and Janey just have to suck it up and deal with their "corrected" feet. Sweet deal, right?

I realize most parents of kids with CF don't like to hear the hard truth, and I understand why - they just want their kid to be "cured" and live a normal life - whatever that might turn out to be. But if you don't know about the reality - of potential outcomes, regardless of the good doctor's hype, of the differential in each doctor's skill set and what that might mean for your child - then you are likely to watch your child have some very hard times, and feel defeated and angry anyway. But better to be angry at the medical profession for their failures to at least be honest, failures to do the real research that is still being ignored. Be angry for being mislead by runaway egos. But don't be angry at your child when, as an adult, or even while still in their teens, they let you know that even if their feet look "normal," they most definitely do not work that way.

Better yet, get informed. read as much of the info on this site as you can, learn about the outcome studies, and demand the doctors discuss those studies frankly with you, and if they just blow you off and dismiss "your fears," point out that more and more parents of clubbies are learning about these same studies, and demand they start treating you like an intelligent adult. Demand answers - it is your right, and it is for the best of your child's future!

The Difficulty of Committing to Action

2013-09-21T09:22:00.000-07:00

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....

2013-09-14T10:26:00.004-07:00

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:

2013-08-19T20:34:00.004-07:00

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:

2013-08-10T12:17:00.000-07:00

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...

2013-08-08T09:36:00.002-07:00

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

2013-07-17T08:53:00.003-07:00

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!!

2013-07-12T15:56:00.002-07:00

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

2013-07-09T16:34:00.000-07:00

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

2013-07-07T08:54:00.000-07:00

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!

2013-07-04T11:15:00.002-07:00

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!

Are You Living an Unbalanced Life?

2013-06-25T14:41:00.001-07:00

No - not unhinged - though you may be, I couldn't say - but unbalanced. That is, does one side of your body appear lower than the other? Does your head tilt to one side, does one shoulder appear lower than the other, does on hip drop lower than the other? If you stand in front of a mirror with both arms hanging loose to your sides, does one appear to hang a little lower than the other, or does one appear to hang closer or farther away from your sides than the other? When you walk, has anyone ever commented that you look a little crooked, tipped to one side?

If you can answer yes to any of these questions, you may have a leg length discrepancy. If you are a Uni-CF, then odds are even higher that you have such a discrepancy. Yet you may be curious as to why one leg being shorter than the other can cause things like a hip or shoulder appearing lower than it's counterpart, or for your head to tilt a little to one side. This is because when your foundation (just like in a building) is uneven (your legs) then the entire structure will also be uneven. A difference as little as 1/8 inch can cause long-term issues with other parts of your body. But strangely, not everyone reacts - or, compensates - the same as another person might.

This is because we each have somewhat different physical characteristics that make compensation a very personal experience. Some of us have very tight ligament structures, some very loose, and some are somewhere in the middle. This difference can have a lot to do with how a given individual compensates, and to how many different levels of the boy they actually compensate.

This is an introduction to what will be an occasional series looking at how the body compensates for asymmetry. I will be looking at how compensation can present, and how to reverse that compensation when and where it is warranted. Patience - all will be revealed!

Just don't become unhinged, that's all I ask!

To Monetize, or Not to Monetize?

2013-06-21T08:48:00.002-07:00

So, I am considering adding a store and some affiliate marketing to this blog, in order to raise money for the research fund I am trying to launch for clubby research. This is not an easy decision, as I have preferred remaining non-commercial. But I am finding it hard to locate enough money to pay for all the legal and administrative costs associated with launching a not-for-profit organization, so this seems like one potential avenue to explore.

The focus would be only on products and services of value to the clubby community - canes, wheelchairs, elastic wraps, orthotic makers, shoemakers, etc., all focused on real clubby needs. The affiliate marketing aspect of that would be tricky, as most such programs make you take ads that may have no relationship to what the blog or site is even about. But I suspect there are ways around that.

What I need from you out there are ideas of the kinds of products and services that would help you out, day to day, and for relief of pain, etc. No pharmaceutical ads, though - they make enough already off everyone else.

Please add your comments to this post, pro or con, and any ideas for products and services you want/like. I am especially interested in companies you have already had a good experience with. So, jump right in - what would you like to see here?

Navigating the Mental Marshlands

2013-06-16T12:57:00.000-07:00

All disabilities - or, difabilities, as I prefer to call them - have certain elements in common, regardless of the physical or mental or behavioral manifestations each possesses. Some have more chronic pain than others, some are more visible than others, some are even more "money-worthy" than others. There are "orphan diseases" which should be updated to include syndromes and conditions, as not all "orphaned" disabilities are diseases, per se. There are some that present multiple ways - that is, they manifest on multiple parts of body and/or mind. Some are in fact fatal, some short-term, and some lead to steady deterioration over many years. But these are merely some of the ways difabilities may differ.

But the commonalities are often overlooked. For one, everyone with a difability knows they have one. If the physical and/or mental manifestations of that difability don't make it clear, then the reactions of the non-difabled world will make it clear sooner or later, and often in trauma-inducing fashion. For another, except in those difabilities that resolve, whether from a disease running its course, or because the difability was due to an injury that finally heals, the difabled understand they are going to be dealing with their condition and all it may imply for their entire life. This may mean having to deal with issues such as trying to make a living, having to pay for products and services others will never be faced with, even having daily concerns for one's personal safety, especially in some less enlightened cultures around the world.

These commonalities can also have deep psychological components, deep wounding starting quite young, sometimes from family members, schoolmates, teachers, even medical professionals who have poor training and even poorer capacities for compassion and understanding. The courts and law enforcement often display extreme ignorance when dealing with handicapped individuals, especially those who have developmental difability. There have been many instances, even in the US, where individuals with cerebral palsy have been mistaken for drunken or drug-compromised individuals and treated abhorrently. Such experiences leave significant mental health issues that people with difabilities cannot always afford to get the proper help with. To make matters worse, there are not that many mental health professionals who are skilled in meeting the psychological needs of the difabled. And if such an individual is also trying to deal with chronic pain, they are often mischaracterized as merely seeking drugs to feed some mythical addiction. The deeply flawed nexus between our medical profession and our legal system serve to make this a nightmare for such people.

One of the things which make seeking resolutions for these misunderstandings, injustices, and shear ignorance on the part of those who should know better is the social fragmentation of the difabled community. Too many have seen it more in their self-interest to place the focus on their own specific difability - MS, MD, CP, HIV-AIDS, arthritis - and in the short term, this fragmentation has worked - for those who have managed to gain the attention of the rich and famous. But for those who fall more into the "orphaned" zone, this fragmentation has made life even more difficult, and has made it less likely that we will see any improvement in broad-based psychological care, improvements in the reactions and responses of the legal and law enforcement community, and a deeper appreciation of how all those with difabilites are treated by the medical profession and the insurance companies.

I do not expect to see this fragmented behavior of the difabled community to change, certainly not in the near term. It works too well for those whose difabilites show up in larger numbers, and where funding levels have permitted there to be some advances in treatment, prevention, and palliative care. But there is a cost to this, which is borne mostly by those with "orphaned" syndromes, conditions, and diseases, and because so little funding and even less public awareness often attends the affected individuals of these "orphaned" classes, the situation can seem dire, unfair, and without hope. Maybe it is time to start a conversation among all the difabled community, to seek more equitable ways to deal with both the specifics of each form of difability, and with the commonalities we all deal with every day.

I am ready for that conversation. Are you?

How do I Feel About World Clubfoot Day? Meh.....

2013-06-03T19:05:00.000-07:00

Today, according to the Ponsetti Institute, is World Clubfoot Day - actually, it is Ponsetti's birthday, so there's the first clue. Not that I don't think there shouldn't be a celebration for us clubbies, but the problem is, it isn't - for all clubbies. It's for all the new clubbies, yes, all the young ones, those, specifically, still in the care of the pediatric medical community. And I think that's OK - as far as it goes.

The trouble is, it doesn't go far enough. Because for everyone past the age of pediatric care, well, you are pretty much on your own. Unless you think having one solution - fusions - is really a sign the medical community cares about you. I mean, go ahead, celebrate, but what, exactly, do adult and late-teen clubbies have to celebrate? We see the use of words like "corrected", and "cure" and "prevent." None of which are true, and all of which are designed to lull parents into complacency. The doctors want compliance, belief, trust. That's why they just can't bring themselves to tell parents the whole truth.

Even the Ponsetti community isn't hearing the truth. Just because you reconfigure the feet with little or no surgery still fails to address the other aspects of TEV - the distorted muscle cells of the lower leg, the fact that repositioning/reconfiguring does not guarantee fully optimal biomechanic alignment of the joint facets. And even by their own studies, at least 20% of those treated through the Ponsetti method fail to find long-term relief. If we also look seriously at the actual studies done by Ponsetti practitioners, they still haven't had anyone, at least not in any significant numbers, reach middle age and still report a pain-free life. So thanks, but I would rather wait for the real long-term studies before I start patting Ponsetti on the back.

Now, I am glad that the Ponsetti Institute is really trying to make a difference for the kids with CF. I am happy those kids have someone at least trying something different. But until they start dealing with the truth of the matter in a forthright way, I won't be sharing their party just yet.

And until the medical profession starts to take all of the rest of us clubbies seriously - do the real research, develop substantive solutions for those of us not so lucky to be born in the Ponsetti Era, seek good palliative treatments that don't start and stop with fusions - I will only be celebrating the day each clubby I know finds some small amount of relief from the daily grief of their damaged feet.

That's the only party I see worth celebrating right now.

My Wife Went to Carnivale, and All I Got Was This Lousy Chair

2013-05-26T10:06:00.001-07:00

Staying home again...you know how it is. The spouse wants to go to Carnivale, where you have to walk 20 blocks just to get near the parade, then stand and cha-cha for hours, watching your kid or your neighbor's kids in the middle-school samba party selected for the twentieth space of the parade, then shuffle back through the hoards to find your car, or wait for the trolly, whichever. And you used to go with your spouse, until that last time when the pain was so bad you walked home on your hands (and you had never walked on your hands once in your life,) but that was better than scootching home on your butt. So now, you stay home, and spend six hours in front of the computer in your on-going search for the best scooter at the best price, and wonder when you will finally give in and get the damned thing.

I find it puzzling that I even need to justify such a purchase, not unlike the mental gymnastics I went through on that whole handicap placard question. You know: There are many people already in wheelchairs who need them, and I can still (sort of) walk. Man, was I stupid - or perhaps just overly stubborn, who really knows. But here I am, realizing that staying home all the time is just plain warped, as though it were some virtue. Oh, for crying out loud, man - get a clue! Just call me slow on the uptake, I suppose.

But the reality is, you aren't merely getting a scooter - wait! There's more! Yes, much more. First, if you have steps, you need to build a ramp, unless you live somewhere they actually have garages, which we don't. So - a ramp means altering the front yard - all 8 x 18 feet of it, which in my case means no more plants in the front of the house, which is pretty sucky, ya dig? Which means a serious negotiation with the esposa, that I promise you is going to be epic. Then, you need a lift for your vehicle, as you need some way to carry the scooter when you are going more than several miles from home. There's another $400-1000. Ain't this grand?

And as for the scooter itself, well, that is where the fun truly begins! You want a three-wheeler, or a four-wheeler? One is better for outdoors, and the other for indoors, so if it looks like you just can't do much walking at all, then three wheels is for you, because the turning radius is shorter, meaning you can maneuver it around the old abode easier. But if you can still walk around the house OK, then go for the four-wheeler because it is better for the outdoors, and some models will handle off-roading better than a Willy's in four-wheel drive. And Sugar Magnolia, to you, too!

Then there is miles-per-charge - the greater the range, the higher the price, it seems. And carrying capacity - that is you, your groceries, and Spot all together, so keep in mind what you plan to do while you are out and about. If you like going to big street parties or Disneyland, plan for the higher capacity, because you know the grandhoppers will be tuckered and think of you as the bus. Just sayin'. And don't forget the accessories - most come with a nice old-fashioned wire basket to hang on the front for shopping. But then there are the rain covers, the locking back trunks, the three-toned horns, and those plastic streamers you add to hang from the handlebars, just like when you were a kid. I kid you not!

Anyway, the spouse came home with glitter painted on her face and looking blissed out. I, on the other hand, merely had a glazed expression, not unlike a doughnut. And no churros for me.

Another Window on the Issue of Pain

2013-05-11T22:06:00.001-07:00

Pain, especially chronic pain, and even more especially bone-deep chronic pain, is not just one thing. It has many variables, solicits many reactions, has multiple dimensions. This is why it is so difficult to manage, and everyone who experiences it knows that the best you can hope for, most of the time, is to manage the pain. This kind of pain, as most clubbies come to learn, is never really just going away.

Perhaps the most difficult thing is to successfully explain such pain to others, especially to doctors. They are quite fixated on their vaunted 1-10 scale, with all the happy-to-miserable faces, as though all pain can fit such a system. They seek objective measures for a subjective reality, and while this might suit sudden-onset, short-term types of pain, it hasn't a clue when it comes to life-long chronic pain, bone-deep or otherwise. This also, I believe, explains why pharmaceuticals fail at dealing with such pain, because they are designed to target how the brain processes pain with little regard for where the pain is being generated, which for us is in our feet and lower legs. And it also explains why some clubbies are now exploring and seriously considering amputation as a real long-term solution, for which they have ample justification.

Of course, amputation has its own issues, but bone-deep pain isn't one of them. But besides the bone-deep chronic pain, there are other types that occur with post-CF feet. There is compensatory pain - when our ankles, knees, hips and back begin to ache and scream because our biomechanics are completely screwy, and nothing is acting the way it should, our symmetry is shot, and our bodies are trying to find ways to ambulate without making our inner balance complete garbage.

There is the pain we get when our arches cramp, our calves seize up, our toes get corns from being hammered and press against our shoes. There is the feeling of our feet being in traps all the time, because we need all that tight support to get through the day, and when we take those tight shoes or boots off at the end of the day, or remove our AFOs, we scream from the effort our muscles and joints have to make merely to relax. It's almost as if we are better off inside those traps.

Essentially, clubby pains are all about trade-offs. We trade one pain for another, just to shift the pressure, just to take the edge off. An ice-water soak one day, heat the next, pay for a day at the museum by calling in sick because we can't even think about getting out of bed. We get tired of the tight boots and wear slippers all day Saturday, and then pay for this small cheat on Sunday. Trade-offs, but never substantial solutions.

Yet despite this, despite the pain, the half-measures, the frustrations with the medical community and their near-absolute ignorance when it comes to our particular feet, most clubbies I know are driven to enjoy their lives in spite of these awful realities. Some are driven with their love of sports, some are driven by their careers, some merely by the stubborn refusal to be beaten down by the dubious burden they were born to bear. We deal with pain because we must, but we deal with life because we insist on it. Nearly every clubby, at some point in their life, usually after bearing the burden of pain for many years, feels like it will inevitably bring them to their knees. Yet even then, they fight, they demand more of the world, of themselves, because they know something about dealing with life that people who are not carrying such burdens don't know, may in fact never know.

They know there are others dancing the same dance, limping the same limp, who really do get it. Who know that some stupid 1-10 scale is meaningless, who know how to dig very, very deep inside themselves to squeeze every ounce of life out of life. They face the battle with determination, because that is the only viable response. And I am happy to be among such fearless warriors, who help me lift my feet every day.