Dream Sequence

So, I had that dream again. You know? The one where my feet are perfect? Yep, that one. Well, imagine my surprise once again awaking from that dream, and damned if it was just another lie. Crud. 

 

Yeah, I have that dream every few years. I get to wear nice sexy Italian loafers, run a mile in less than four minutes, climb Mt. Kilimanjaro, dance with the stars till 5 AM, do every museum in Paris in three days flat, take the grand-kids to some damned theme park for an all-day outing - blah-blah-blah - then get up the next morning and do it all again. No pain. No worries.

Right.

I hate that dream. Just a big tease, but no delivery.

At least when I wake up from one of my flying dreams, I know what to expect - gravity still works. I enjoy those dreams.

A lot.

A Thought Experiment Regarding PTEV Syndrome

First, let me just say this post is a prelude to something I suspect will take much longer and far more detail to explore, but wanted to get the raw idea down before it slips from my increasingly ephemeral mental moorings. You have heard me talk about the issue with our lower leg musculature, how the cell structure is radically different than in non-clubby legs. What has only just occurred to me, in thinking about this at some length, is that the very act of changing/altering our initial TEV toward a plantigrade position, through castings, bracings, and surgeries, may be setting us up for future pain issues because of the very nature of that cellular deformation.

If we look at how muscles work, by stretching and contracting to provide motive power, it is clear there is a level of elasticity that is critical to those functions over the course of one's life. If the elastic nature of these muscles is altered, that is, less elastic, then changing the position of the bones acts to alter the oppositional nature of the muscle groups, as well. This means that some of these muscle groups are likely to be subject to more stretching while the opposing group becomes more contracted, while at rest. In a normal muscle, such a change would be offset within a short period by the ability of the muscles to strengthen and grow. But if our muscles, already atrophied at birth, cannot grow or strengthen as readily, and as seems obvious for some clubbies, not at all, then there is less ability for the muscles to make those necessary adaptations.

This would suggest that the kinds of muscle pains (not joint pains, specifically, but in the muscle bodies themselves) some of us clubbies, especially as we age, experience may be the result of this musculature aspect of post-club foot syndrome. This non- or less-elastic nature may also explain why there is the propensity in some clubby children for regression of the positional aspect of the syndrome, where additional TALs are performed. If the original tendon lengthening or repositioning proves insufficient, perhaps it is not the amount of change that is the issue, but the act of making that change causing even further reduction of elasticity within the muscle body itself. By increasing the posterior group's length, the anterior group is thereby shortened. Both muscle groups, then are being forced to perform something they are poorly suited to perform.

This requires far more research and analysis, of course, but I wanted to put this out to stir the waters and get it down for further consideration.

Mind Shift Ahead!

There is one thing more difficult than dealing with chronic pain and the awful responses we clubbies get from the medical community - our own attitudes and beliefs. We as individuals are shaped by many factors besides our experiences as a clubby. Our communities, families, peers in school, media, the times we grew up in, our country, etc. So our beliefs - about ourselves and the world we inhabit - are often quite difficult for us to challenge and change. After all, we want to be a part of our community, and we already battle how our handicap separates us from that community. It might center around our need for AFOs or different-looking shoes, when we would greatly prefer to mesh with the fashions of our time and locale. Or it might center around how our handicap and the attendant chronic pain limits our participation in activities with our families and friends. It may also be strongly affected by our financial conditions that limit our options for responding to our pain and medical needs.

But however it affects us, we each have to find ways to respond to those forces in the best ways we are able. For some of us, this means often denying we even have a problem, while for others it means dealing with depression, or worse. However we do so, our main goal often appears to be to find ways to avoid dealing straight-forwardly with the fact of our handicap. After all, who wants to have to spend so much of their lives having to deal with this? We would all rather be doing better things, like living life the way our friends and families do.

Denial, however, has no positive impact on our pain or possibly worsening condition. We ARE clubbies - this is an undeniable fact. Thus, we need to shift our perspective, to admit the truth of our condition, and make our lives work with this fact fully incorporated in our daily concept of our self, and how we live this life. This does NOT mean that we do whatever the latest medical consultant tells us we need to do, because we, or at least many of us, know how little these people actually know about our condition. "Well, we COULD do...." is NOT a good answer to our needs. Yet we are, like most humans, conditioned to trust and believe whatever a professional tells us, especially in the field of medicine. The problem is, doctors are themselves conditioned to believe they are always the  expert, and therefor MUST know what the hell they are talking about. They, sadly, are often even worse at challenging their own beliefs than non-professionals are.

But we need to struggle against that tendency. We need to challenge such ideas such as whether to pay for a more expensive alternative that has the potential to really make a difference, or settle for the cheapest alternative that may only make a small difference, or only for a brief period of time. We also need to challenge our desire to wait for the insurance provider to be willing to pay for something, versus biting the bullet and finding some way to pay for it ourselves, rather than forgoing real relief. The truth is, accepting some bureaucrat's NO as something you have no choice but to be limited by is the same thing as doing nothing to help yourself find relief. I have always paid for my own custom shoes myself, both because I know they are the best thing for me, and because fighting with the cretins at an insurance company once was enough. Now, I get what I need myself, rather than allowing myself to be limited to bad decisions by ignorant people.

But I do not pretend this is easy. Money is tight, and coming to such decisions requires information that we may not have, or may not fully understand or appreciate. But the first step to real change is making the decision to not take someone else's NO for an answer, on any level. First, you need to decide, once and for all, that your needs matter more than someone else's limits based on their ignorance. Once you get to that understanding, the rest becomes easier. But you have to get to this first step first. Ask yourself this: "Why do I think I am not worth putting me first in my life?" Then ask, "Who tells me that?" And finally, "Why have I chosen to believe such lies?"

Shifting belief is not easy, and can be quite frightening for some of us. But we cannot avoid this forever, unless we are content to be a victim of the ignorance of others, and captive to the pain and limits you face every day.

It's your choice.

The Limits We Face

This is something I recently posted on the clubby FB group:

To continue the discussion on limits, I think we all need to remember that having limits is not to be equated with being inferior, or less-than. It is easy to fall into an unconscious response to our differences as a sign we are somehow worth less than other people. So much is made in our societies about being a "winner", a high achiever, about physical perfection, about what constitutes "cool." But these are all artificial ideals, and often serve to enforce class differences, rather than say anything true about any one person.

When I deal with my differences, and experience an adverse or somewhat muddled reaction from another person, I have choices in how to deal with their reactions and responses. I can choose to be upset, self judgmental, and depressed. Or, I can use the occasion to educate the other person, or to let them know they may need to seriously reconsider their own values by how I respond. I always feel like I exercise as much control over the situation as the other person, specifically in how I choose to respond. It is likely such people are anticipating that I will have a negative response, or self-damaging response, to their ignorance. But I usually find if I take the opposite approach to what they seem to hope for, I can nearly always fully control the outcome.

My feet may be screwy, but my mind is just fine.

 

How about you? How do you deal with your limitations, especially emotionally? Do you beat yourself up, or struggle to accept seeing yourself as having a handicap? Or have you lept over that chasm and landed intact on the other side?

Dancing the Night Away

OK, so I have restless legs, so what of it? Attended the wedding of a couple of youngsters yesterday, and as always happens, mi esposa wanted to dance. Now, let me tell you that mi esposa is one hot dancer. That's how we met, in fact, while dancing at a Cinco di Mayo party. So I do everything I can to urge her to dance - which usually takes "Hey, do you wa...."? Then I have to run to catch up. Now, if I do everything right, I can usually make it through the event with minimal damage. But "everything right" means: support socks, ankle braces (in my pocket, just in case), a spare pain med (again, just in case,) lots of rest early in the day, dance one dance, sit out the next two, dance another, sit out the next three, etc. Usually works.

Unless the DJ is particularly devilish. Which was the case last night.

Perfect play list. Superb timing. A number of sub-par dancers who needed a good role model. A certain young dude developing a fascination with mi esposa. 

I didn't have a chance.

Did I tell you my wife is one hot dancer?

I'm gonna kill that frikkin' DJ.  

Right after I regain the use of my lower extremities.

What Needs To Happen

You have heard me talk about the need for research, and how poor the existing research is as it applies to post-CF syndrome - well, essentially it's non-existent. But there is one area for which there is a lot of papers in the literature, and that pertains to the muscular atrophy most clubbies have in their lower legs. I say lower legs, and not simply calf, because the atrophy affect all the lower leg muscles, not merely the posterior group - the gastrocnemius and the soleus muscles. And despite the rather large number of papers that look at this issue, the problem lies with the conclusions and focus of such papers. Most are trying to use this aspect, known as the histological aspects - looking in detail at the tissues at the cellular level - to better understand the etiology of TEV. That is, the cause.

Now, i applaud every effort to delve into causation, in hopes that someday, some therapy such as in-vitro stem cell therapy might actually prevent TEV altogether. That would be a wonderful outcome. But such research fails to address some rather important ethical and practical issues - for starters, what about this atrophy and its implications regarding those already born? How will it affect us? Will it become more problematic over time? Are there ways to offset those impacts? What role does this atrophy play for the issue of recurrent deformity, where more and more surgery is applied? Is it possible that the atrophy itself leads to the recurrence? And if so, why? What mechanisms are at play? How can a better understanding of this muscular degeneration inform more predictable outcomes? perhaps there are degrees of deterioration, perhaps the element of the tight Achilles has little to do with the Achilles at all and everything to do with the muscles involved.

But without taking the existing research and using it to ask new questions, there is little hope that any of these questions will find answers, certainly not in the near term. And so we post-CF folks are left to be guinea pigs without a researcher. Add this to the failure of the adult orthopedic or podiatric community to be willing to seriously address Post CF Syndrome, and where does that leave us clubbies?

To fend for ourselves, that's where.

Compression Stockings

Some clubbies have heard about and used compression stockings, or socks. And given how well they work to aid in controlling edema, more clubbies should consider trying them. So it helps to have a better base of knowledge about these essential tools for lower leg relief. And as there are several types, and many manufacturers, it is important to know what you need, and what you can afford.

What is the Purpose of Compression Stockings?

Chronic edema may be connected with many conditions. Edema can act to slow venous return - the process whereby your veins act to pump used blood (de-oxygenated) back to the heart for recirculation. Compression stockings can act to reduce edema by acting as an external pump to help cycle the edema out of the lower legs and permit more effective blood flow. Compression stockings come in two primary configurations - gradient, and uniform. Gradient stockings start quite tight at the foot, and become gradually less tight as they go up the leg. Gradient work best with:

• Tired, aching, heavy feeling legs
• Leg swelling
• Varicose veins
• Venous insufficiency
• Post-thrombotic syndrome
• Healed venous ulcers
• Active venous ulcers
• Lymphedema

Uniform grades work well with basic chronic edema, but if there are other complications, such as poor venous return (the ability of the veins in the lower extremities to pump the blood back toward the heart), then gradients are a better solution.

  It is usually recommended that you consult with your doctor before wearing compression stockings 20 mmHg and above. If you have arterial circulation problems, please consult with your physician before wearing any level of compression.

When Should Compression Stockings NOT be Worn?

Contraindications (medical conditions in which compression is not recommended):

• Ischemia (advanced arterial disease) of the legs
• Uncontrolled congestive heart failure
• Untreated septic phlebitis of the leg

Compression stockings should be worn with caution when one has:

• Skin infections
• Weeping dermatoses
• Allergic to garment fabric
• Impaired sensitivity of the limb
• Immobility (confinement to bed)

 What Kinds Are Best For Me?

First, you should have your doctor recommend the best type (note: not brand, but type.) You should also be aware of whether you have a latex allergy, as some brands come in latex. But there are many brands available without latex, so don't worry too much about that issue.

Another factor is texture and feel. Some are very hosiery-like - smooth and thin, whereas others are more sock-like, with a good cotton feel, closer to regular socks. So it makes it easier to get the feel you are most familiar and comfortable with.

They also are available in at least a few colors, most often beige, black, and brown, but there are a few makers with a slightly broader selection. They are also available in both knee-high (the most often used) and thigh-high and panty-hose styles. These last two are for specific medical issues, so most clubbies will be looking at the knee-high variety.

Cost is a big factor. The original brand of compression stockings was Jobst, and these are still among the most expensive. But there are other makers, at lower price ranges, so shop around. You can find pretty much every kind on Amazon.com, and that is about the best place to do your comparison shopping, so I suggest starting there (this blog makes no money through Amazon.)

Care

There is one big caveat in the care of your compression stockings - never put them in the dryer. Machine washing is fine, but always, always hang dry your socks/stockings, or the elasticity will begin to fail rather quickly. Your stockings should be as hard to put on the tenth time as they were the first time.

Yes, they ARE hard to put on. And you should always put them on first thing in the morning, while your feet are at their least-swollen. This will make them easier to put on, and will allow them to better control your edema right from the start. Just roll them up and stretch them over your toes and work them incrementally up your feet and calves. If they are a little long at the knee, just fold them back one fold only, so you don't pinch off too much behind your knees. Be sure to get all the wrinkles out before putting your shoes on. All compression stockings have a looser weave at the toes and the heel, to prevent cramping, so be sure you have those areas adjusted well before putting on your shoes.

Use of lotions and creams with compression stockings?

If the stocking is latex free, it is perfectly safe to use lotions or creams. In fact, it is especially important for people with lymphedema or venous insufficiency since daily skin care and moisturizer is so important. Applying lotion at night will make donning the stockings easier. If the stocking contains latex (some of the Jobst SupportWear brands, for example), do not use lotions or creams. Heat, ultraviolet light, copper containing products, hydrocarbons and all petrolatum containing creams and ointments affect garments that contain natural rubber latex yarns.

Sources

There are many sources for compression stockings, Amazon being only one. I suggest Googling the term "compression stockings" and looking for both on-line resources, and local sources, as well. The best way to start is to buy one pair locally, so you can get a sense of the feel of the material. You will pay more this way, but you can buy all your other pairs on-line and save a bundle.


Be sure to break them in, or rather, break in your legs to them. Wear them every other day at first, until you get the feel for them. But you should be able to wear them regularly within a few weeks. I suggest buying at least enough pairs to allow you to hang dry some without being caught with none to wear. I won at least ten pair, but you may feel OK with fewer.

And remember to talk to your doctor about these first. You don't need a prescription, though I have heard of some stores demanding them. But I have never encountered this issue on-line. If you do, please let me know on what site, and I will warn everyone about them here.

Psst! Look, Over There, To Your Right!!

Yep, right over there - that's right - the Survey!! haven't filled it out yet? It's fun, it will help other clubbies, it makes you a participant and not merely a spectator, and, in the Olympic spirit, a Real Winner!!! Help us get to 100, 200, 300 or more responses, from the only real experts there are on post=CF - YOU!! Come on - what are you waiting for? An Invitation? Well, here it is!! Now, you don't have anything else to wait for!!

Do your part today!!

Another Great Blog!

Just came across this great blog, http://thegimpparade.blogspot.com/ and had to share it. Not just for clubbies, but all people with challenges. I strongly recommend you read it, and go back often. Excellent news, critiques, humor and outrage, all in exactly the right amounts. If you do drop in, tell her where you found out about her blog!!

Then go visit http://blobolobolob.blogspot.com/ Diary of a Goldfish - another great blog for folks with a difference engine in their lives. Trust me!

First Annual (I Hope) Post-Clubby Dinner and Get Together

So, for those clubbies not on the Facebook group, as well as the casual passers-by, I am announcing the first Annual PCF Dinner and Hob-Knob, to be held this year in San Francisco, on August 18. The day will include a visit to a real therapeutic shoe maker, and will include an informal gait analysis, and then, dinner at a waterfront restaurant here in San Francisco. The say will begin about 2 PM, with dinner around 6. If this is a date you can make, please contact me by leaving me an email address and I will email you the particulars. All clubbies welcome, and your partners, as well, though I will handle the cost of dinner for the clubbies only (somewhat limited in the old wallet, so I have to keep it in reason, but the restaurant is within reason, and the food is very good!)

I hope you can make it, but if not this year, make early reservations for next year now! Hope to see you on August 18, 2012!!