What Life is Like for a Clubby – A Typical Day

5 AM. Alarm goes off – slam it against the wall. 

5:30 AM. Other alarm goes off, positioned across the room. Put pillow over head. Wait ten minutes, or less if your partner yells at you to get up and get going and turn that damn thing off.

5:40 AM. Hobble to the alarm, turn it off. Sit on the edge of the bed because your feet, knees, hips, back, neck are screaming at you, despite a solid 4-5 hours of heavily interrupted sleep.

5:50 AM. Push up from the bed, stand still for several minutes while you work to convince yourself this is actually do-able. Hobble to the bathroom, do your morning ablutions. Hobble back to bedroom, pull on your compression socks/elastic ankle brace/AFO/whatever, then get dressed.

6:15 AM. Breakfast, interrupted occasionally by electrical-storm cramping in one or several extremities. Wonder if the general body ache is worse or better than the day before. Maybe take a pill.

6:30 AM. Get in car/bus/train, go to work/look for job, hope you can keep your walking/standing time within your constitutional limits, unlike yesterday.

8:30 AM. Take pill, maybe.

9:30 AM. Remind boss why you are the wrong person to send out to canvas the local businesses/do his shopping/carry those ten boxes to FedEx/etc., and remind him what happened last time he did that. Hope he doesn’t threaten to fire your sorry, crippled ass. Before heading out, put on second elastic ankle braces over the first set. Maybe take a pill.

12 noon. Lunch. Forgot to prepare one this morning due to pain-induced procrastination. Force yourself to go to the nearest restaurant/fast food/burrito palace despite getting serious food poisoning there the last time, but at least its close. Chalk up another successful trade-off. Take the zantac before and after, just in case.

1:00 PM. Return to work. Enter basement/top floor storage closet, close door, scream for two minutes. Upon coming out, encounter a manager, and just say, “therapy, doctor-recommended,” and return to your station/cubicle/cash register/lift truck/etc. Sit/stand until next break. Maybe take a pill.

3:00 PM. Leave early to make it to doctor appointment. Arrive ten minutes late, receive disapproving look from receptionist, then wait for two hours as the sword of retaliation cuts you down. Enter doctor’s exam room. Wait. Get blood pressure and temperature taken. Wait. Get a reassuring promise from the assistant that it “won’t be much longer.” Wait.

4:30 PM. Doctor enters exam room, looks at your chart, says, “hmm” several times, then aims a fake smile in your direction, clears his throat. Hear him say exactly what he said last visit. Ask for another Rx. Hear him say, “well….. I’m concerned about possible addiction issues with the amount of pain medications you’ve taken so far.” Remind him about your always-on, chronic, no let-up in sight screaming bad pain. Tell him you appear to be already addicted to pain, and can’t he help you fight that addiction. Realize he is incapable of appreciating sarcasm, or irony, or both. Hear doctor repeat, “well……. Let’s try some different approaches to pain management. How about meditation, hmmm?” Repress strong desire to stab doctor in eye with his own always-clicking pen. Tell him the pain keeps you from sleeping, from getting up, from having sex. That last one does the trick. He also writes an Rx for Viagra. If you are a female, remind him of the uselessness of such an Rx, or not. Maybe take it for your partner. Let HIM take a pill this time.

6:00 PM. Take car/bus/train/cab home. Alternately, take a long walk off a short pier, er, go shopping for groceries. Say “screw it” and purchase extra-large tub of chocolate ice cream. Vow to bite off the head of your partner if they so much as raise an eyebrow about it. Then go home.

7:30 PM. After partner complains about their day, and shares excuses about why they cannot make the dinner tonight, open a can/take from freezer/call for delivery. Shoot dirty looks at partner/kids/dogs/cat/hamster when they ask what time dinner will be ready. Take a pill, definitely.

9:00 PM. Remove shoes/braces/splints/compression socks. Scream for ten minutes, screw the storage closet approach – let everyone else in on the secret. Ask your partner for a foot massage. Or, give him that pill. Whatever. Resent the lackluster approach they show, either way.

10:00 PM. Watch Grey’s Anatomy. Cry. Demand partner go and fetch the ice cream. Threaten them with a spoon if they so much as ask for some – it’s all yours, dammit! Take a break to slather on some of that useless deep-heating ointment. Maybe take a pill.

11:00 PM. Go to bed. Spend half-an-hour arranging blankets/pillows/ice pack/heating pad to the right specifications. Ignore the complaints of your partner that you are doing this just to annoy them, but consider using that on another night. Spend another hour finding the “right position.” When your partner tries to initiate intimate relations, ignore his pleas and his reminder that you did, after all, give him that pill. Let him suffer. Your night time cramp-screams help with that proposition.

3:00 AM. Get up, hobble to bathroom, step on the cat’s tail in the dark, hit your toe on an object in the hall later identified as child’s dump truck, curse loudly. Hobble back to bed. Take another hour to find that comfortable position again. Cry occasionally.

6:00 AM. Vow to get another alarm clock, realize you’ve already gone through seven this year alone. Begin another day. Definitely take a pill.

Another Post About the Not-So-Fatted Calf

Went to see my massage therapist yesterday. He spent an entire hour and a quarter just working on my feet and legs. And he really went digging for gold, let me tell you. Deep tissue? Pshaw, 'tain't nothing to that. No siree! He went to the bottom of the Marianas Trench! But, being that he held my most painful calf, the left, in the palm of his hand, he was able to make several quite astute (though no less painful) observations about that particular item of my anatomy.

"You have some funny calves." There, now its no longer my secret, I thought. I didn't say it out loud, of course. But what I did say was, "Uh, funny, ha ha? Or, funny, you may want to take out a life insurance policy?" He thought this was superb massage table humor. Yes - he laughed. But then he said this: "the top of your calf narrows from it's widest point very abruptly. Most people's calves taper from the widest point to the insertion of the tendon more gradually." I suggested that perhaps it's because I'm just special, but he wasn't biting (thank goodness.) He knows about my "special" problem - yep - post-club feet, so I wasn't going to get away with anything on this go-round. So, we just bantered back and forth for a while, doing that speculative boogie occasioned by people with a fetish for biomechanics like to do.

It occurred to me that this may be another aspect of the overall issue of atrophy peculiar to Post-Club Feet, where the actual muscle fibers are substantially different compared to the general population. They are in fact shorter fibers, when viewed under a microscope. So perhaps this shortening of the fibers also manifests with this more abrupt tapering of the gastrocnemius and soleus muscles as they approach the posterior knee. And that brings us to this week's question for the clubbie hoards out there: Do you have this particular shape to your calf muscles, where they taper toward the knee very abruptly? You can test this a number of ways to arrive at your answer:    

Compare your calf to another family member's or friend's calf muscles. Palpate (that just means feel) your own calf's shape, then palpate the shape of your "control group." Then, try it with a few more people, to rule out ( somewhat) the random factor. Focus on the upper third of the calf, from the widest part to the back of the knee. Yes, I am asking you all to participate in a very simple bit of research. And if you want to take it a step further, then get out your camera! Have someone photograph the backs of your calves, while you are standing. Then, photograph each of your "control group's" calves in the same posture. If there is something to this bit of speculation, and if we can entice a sufficient number of you clubbies into taking part in it, we may actually be able to add something to the rather limited knowledge base regarding post-club feet!

Now, wouldn't that be fun?!

The Weakness at the Edge of Town

I recently had a doctor say to me: "look, you really need to get focused on how you felt when everything was working right, instead of focusing on your pain. That's what it takes to recover after a surgery." Yeah, I know - should have just slapped his face. Would have been less wear and tear on my vocal cords. But, you know me - why punch when you can just harangue, right? I mean, what is it about, "I have severely atrophied musculature in my lower legs from a congenital condition" that these guys just can't get? "Work harder and you'll be able to re-build them." Oh, criminy sakes, would you guys just listen to yourselves? Where exactly did you do your medical educations?

But that's really just a part of the over-all slide into opinion as the primary operating procedure for expertise we are seeing in this country (yes, yes, its my opinion. Sheesh - it's also my blog, and I don't do this very often, so be patient, OK? The meds ought to kick in soon.) From pretty much every profession, yes, even those supposedly held firmly in the grip of the scientific process, the tendency is toward cookie-cutter thinking, framed through the lenses of ideologies.

So, to review the (actual) science. re: muscle atrophy:

This is an abstract from:

Journal of Bone and Joint Surgery - British Volume, Vol 59-B, Issue 4, 465-472
Copyright © 1977 by British Editorial Society of Bone and Joint Surgery

The muscles in club foot--a histological histochemical and electron microscopic study

H Isaacs, JE Handelsman, M Badenhorst, and A Pickering
In talipes equino-varus the diminished bulk of the calf muscle suggests a neuromuscular defect. Accordingly, biopsies were taken from the postero-medial and peroneal muscle groups, and occasionally from abductor hallucis, in sixty patients mostly under the age of five years; 111 were studied histochemically and histologically, and a further fifty-three by electron-microscopy. Histochemical anomalies were revealed in ninety-two specimens; the muscle fibres in the other nineteen varied in size but were abnormal at the ultramicroscopic level, as were all specimens examined with the electron microscope. Evidence of neurogenic disease was seen in most instances and was more obvious in the older patients. The pattern of abnormality was similar in both muscle groups. It is thought that shortening of the postero-medial muscles may result from a small increase of fibrosis due to minor innervation changes occurring in intra-uterine life. There is evidence that immobilisation, stretching or relaxation of muscles does not account for the anomalies observed. This study of the extrinsic muscles in talipes equino-varus indicates a dominant neurogenic factor in its causation. 

And this one:

Talipes equinovarus

Leg muscle atrophy in idiopathic congenital clubfoot: is it primitive or acquired?

Related Articles

Leg muscle atrophy in idiopathic congenital clubfoot: is it primitive or acquired?
J Child Orthop. 2009 Jun;3(3):171-8
Authors: Ippolito E, De Maio F, Mancini F, Bellini D, Orefice A
PURPOSE: To investigate whether atrophy of the leg muscles present in congenital clubfoot (CCF) is primitive or secondary to treatment of the deformity. METHODS: Magnetic resonance imaging (MRI) of both legs was taken in three cohorts of patients with unilateral congenital clubfoot (UCCF): eight untreated newborns (age range 10 days to 2 weeks); eight children who had been treated with the Ponseti method (age range 2-4 years); eight adults whose deformity had been corrected by manipulation and casting according to Ponseti, followed by a limited posterior release performed at age 2-3 months (age range 19-23 years). All of the treated patients wore a brace until 3 years of age. Muscles were measured on transverse MRI scans of both legs taken midway between the articular surface of the knee and the articular surface of the ankle, using a computer program (AutoCAD 2002 LT). The same program was used to measure leg muscles in the histologic cross sections of the legs of two fetuses with UCCF, spontaneously aborted at 13 and 19 weeks of gestation, respectively. Measurements of the whole cross section of the leg (total leg volume: TLV), of the muscular tissue (muscular tissue volume: MTV), and of the adipose tissue (adipose tissue volume: ATV) of the tibia, fibula, and of the other soft tissues (tendons, nerves, and vessels) were taken by using an interactive image analyzer (IAS 2000, Delta System, Milan, Italy). RESULTS: Marked atrophy of the leg muscles on the clubfoot side was found in both fetuses and untreated newborns, with a percentage ratio of MTV between the normal and the affected leg of 1.3 and 1.5, respectively. Leg muscle atrophy increased with growth, and the percentage ratio of MTV between the normal and the affected leg was, respectively, 1.8 and 2 in treated children and adults. On the other hand, fatty tissue tended to increase relatively from birth to adulthood, but it could not compensate for the progressive muscular atrophy. As a result, the difference in TLV tended to increase from childhood to adulthood. CONCLUSIONS: Our study shows that leg muscular atrophy is a primitive pathological component of CCF which is already present in the early stages of fetal CCF development and in newborns before starting treatment. Muscular atrophy increases with the patient's age, suggesting a mechanism of muscle growth impairment as a possible pathogenic factor of CCF.

 (bold highlite added for emphasis)

So, the next time a doctor, PT, orthotist, etc., makes some remark that you just aren't working hard enough, or that if only you'd get focused on healing (like that would be the last thing you really would want, right?) send them these two abstracts.

Then, tell them to shut up and refer you to someone who's already done their homework.

Oh, just to do full disclosure? The second abstract above? I found it at http://www.checkorphan.org/

This is from their "About" page:

CheckOrphan is a non-profit organization located in Basel, Switzerland and Santa Cruz, California that is dedicated to rare, orphan and neglected diseases. CheckOrphan offers users an interactive and dynamic platform for all these diseases. This strategy allows visitors to be updated daily on all the latest news and interact with people internationally. This is essential, because due to the nature of these diseases, there is not a large concentration of individuals within any given proximity. 

Visit them today, learn about their mission. They are doing the real work, for people like us - people whose issues fall between the cracks.

Calculations and Considerations

Perhaps one of the most frustrating things about post club feet is their variability, their unpredictability (though it's not so hard to predict they will only get worse over time.) What I mean by this is how one day the pain is tolerable, and the next? Who knows? It always seems to make anything I want to do, say, go to the park with my dogs, an adventure in calculations. "Let's see - if I go and walk just for ten minutes, then I will only need to prop up my feet with an ice pack for a half an hour tonight. But if I go over, tomorrow's gonna be a real bear. Hmm. What to do?" This is not unlike the dilemma faced by folks with arthritis. The very thought of getting to their feet is fraught with complexity. "I'll leave the door unlocked, so that when Martha drops by for a visit, I can just yell for her to come on in. But with all the crime in the world today, perhaps I shouldn't. OK, I'll just flip a coin..."

The same holds true for the level and the quality of the chronic and not-so-occasional sharp pain. That famous 1-10 scale? For us clubbies, it should start at 5, and go all the way to 25. Five is pretty much background noise. Seven is an uncomfortable day. Ten and up? Do not allow me to own a gun. No, I am not suicidal. Why would I want to use a gun on myself? But the next bozo that cuts in front of me and makes me stop short? or the joker of a bus driver who likes to hit the brakes or the gas when people are not even in a seat yet? or the next complete idiot who tries to dismiss my pain and disses me for having handicapped plates on my van? Yeah. It would be for them. That's why I don't want to own one. I simply do not wish to make the six-o'clock news, that's all.

Having one club foot stinks, but having two? Well, that's pretty special. Every time one gets a bit worse than the other, I can start limping to put more weight on the temporarily "good" foot to give the really bad doggie a rest. Then, several hours later, I can switch! What fun! It's like serial self-flagellation - well, that set of raw bleeding welts is starting to sting, so I better get to work on the other side. Oh, yes, that's the ticket!

And what about those shoes and orthotics, eh? Aren't they special? When they are new, I have to deal with the "break-in" period. Then, after several truly fun weeks getting "broken-in - not the orthotics, mind, but the feet,) I get maybe a month before there's enough wear on my shoes that the balance is once again off by, oh, I don't know - 1/2 a degree, maybe? And then, it all goes to pot again. So, to maintain anything remotely related to general comfort, I have to re-balance the soles of my shoes at least once a month. More money, more time - it's what I live for.

And what about those doctor's, hey? "Well, your x-rays look fine, they can't really hurt that bad. So, I can't give you a refill for your meds - don't want you getting addicted, you understand?" No. No I don't "understand." You see, Doc, it's like this - these feet? I am unfortunately addicted to THEM. So, pain meds help me break my addiction, at least temporarily. He ain't buying it! OK, I say, try to see it this way, Doc. I GET TO LIVE IN PAIN THE REST OF MY LIFE, REGARDLESS OF WHAT THOSE DAMN X-RAYS SUGGEST TO YOU, SO GIVE ME JUST ONE THING TO HELP ME GET SOME RELIEF!! Oh, I see - - you have no idea what to do? Well, why didn't you say that in the first place? I feel better already.

Well, sarcasm aside, I can't think there's a single clubby out there who does not hold the fervent desire to get just one day in their lives where they didn't have to even think one time about their feet. To do what they want to do, go where they like, and not once think, "well, I've already walked about a mile today, all told, so I think I might have a quarter mile left. What the hell, I'll take the chance." Sheesh, nice deal, eh? Who needs pain meds when you're having this much fun!?

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Once the Recordings screen is up, look at the Calendar in the upper right hand corner. Select September 30. Then scroll to the date of the 30^th, and click on International Clubfoot Week – it is at this point you will be prompted to Install Java – click on those words! – follow the prompts, including any other pop-up windows – always select Yes. It takes a few moments for the Eluminate Session screen to fully load, so be patient.

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Willy Kiyotte