Thursday, December 23, 2010

Feets, Do Yer Stuff!!

Last day of work till next year - yee-haw!!! I've been thinking about this blog for some time now, and wondering what I can do to get more of you to share your own experiences. I thought, "Self, how about monetary incentives?" And I responded, "Well, Self, you got squat, so how do you plan on doing that?" And I was all, "Why you gotta rain on my parade?" And I was all back, "Cuz rains all we got right now, fool!" I do that sort of thing to myself now and then, especially when I'm off my meds, er, chocolate. So if I can't pay you to jump in and share, its back to the drawing board.

I know from other discussion groups and blogs out there that there's lots of sharing among parents of tykes with club feet, and that's as it should be - they get so little real information that sharing is their best option. But us adult clubbies, well, we're another story. I saw a photo of myself at about three, with my Mom looking at my feet, encased in another set of casts. I saw her worry, and her confusion, and wondered how she did it with so little support. She wasn't just worried about my feet and comfort in the present moment, but saw and felt the road I would have to walk through my life and wondered how I would fare, and hoped every day she was making the right choices. That all of those choices were framed and pressed on her by a small handful of medical folks, whose knowledge and skills she had no way of verifying, or putting into a comparative context, meant shear trust was her only real option.

I am of course grateful for all her efforts on my behalf. But I can't help but wonder how different parents facing these same questions today will cope, given the much broader scope of support and information available, especially on the Internet. But one way they are no different at all is they, too, must trust how the choices they make now will affect their child as they become adults and walk the road of their lives. That is one part of why I continue this site - not to say each child will face the same trials many of us older clubbies have, and continue to do, because each case turns out different, and there are many successful outcomes - but I do this for those that are less successful, because even with Ponsetti, and other advances, there are still failures of the process, and each one still has to walk through their own life. I just don't want these clubbies to feel as alone and in as much pain as I and many others have. I hope to provide that information and support that wasn't available to me.

But I can't do it alone, first because I don't have all, oh, hell, I don't have very much at all, of the answers, and second, because support takes many people sharing their triumphs and ongoing problems with others walking a similar road. What worked for you might make a real difference in someone else's life, and vice-versa. And what remains a difficulty for you may help other clubbies know their own pain and experience isn't only theirs to bear. I have to think that the best incentive is in fact your own life experience, and hope in this next year many of you folks around the world with post-club feet find the courage and time to open up more, share resources and ideas, commiserate and cajole where appropriate, and make 2011 a better year for clubbies everywhere.

Happy New Year to you all.

Monday, December 20, 2010

Holiday Cheer, or, How to Kiss Under Holly When Your Feet Are Screaming

My sweet Patootie likes to dress up the place for the Holidays, so as you probably can guess, I am the one who gets to do the work - lights, tree, etc., etc. I get to take it down and repack it all, too. It's gotten to the point where I'd like to design a house with built-in lights that can be exposed and turned on by the push of a button, so I don't have to keep up the seasonal discomfort associated with all that cheer. As you might imagine, I get to wear two hats this time of year - Sandy Claws, and Grinch. I think I'd trade them both in for one of Druid in Cave, at least for one year, a vacation from the day before Turkey till the day after the New Kid on the Block drops down the chute. But I regress...

My office held its annual Holiday blow-out, this year as a moving feast, er, drunken revel, going from one place to another. Despite the generous libations, it did not suffice to anesthetize my screamin' doggies, so I never made it to the last venue. Fortunately, I had an appointment with my massage dude the next afternoon, and after an hour of twisting and shouting, I was nearly normal. Which in and of itself barely attests to my over-all state, but nonetheless, it will have to do for now.

I know there are many others out there who have similar limitations, who must plan each step. Over the years, the actual "standing/walking/dancing" time allowed has shrunk, and today is far more limited than I'd like, but there it is, isn't it? And no matter how many times I ask Sandy Claws for a new bike (euphemism alert) for Christmas, I'd be more likely to get a case of matzo for Hanukkah (I am very ecumenical, for a staunch Implementarian (we worship hardware stores and garden centers - don't worry - we don't proselytize - we don't even extemporize. We just get the job done.) But the good thing about the Holiday section of the year - I can up the meds in the name of good cheer. Can't you see how much bigger my smile has gotten? :-)

Well, I may or may not update again before the tree dries out, but in case I don't, have a Very Merry Whathaveyou, and a Happy Blue Cheer, in the flavor of your choice. Make mine Cherry Garcia.

Monday, December 13, 2010

Prolo el Mano-e-Mano, Dont Count Yer Chickens, Izhak!

Another prolo session this past Saturday. Things seem still on track. But last Wednesday, went to the regular doc, who ordered some blood tests, due to my overall fatigue and aching joints. Been going on about a month or so, maybe a bit longer. So today got a call from Doc - everything came back negative......except - positive for rheumatoid arthritis.

Lovely.

And the various meds all have some really fun side effects.

I hope scotch isn't contraindicated.

Wednesday, December 8, 2010

Ouch! It's Like That

People who suffer from chronic pain have a difficult time understanding why people who don't, just don't get it. It's not like we like to be in pain, nor as though we all secretly desire to be addicts, or that we love to complain. No, no, and no to all of the above. But the truth is, chronic pain is the perpetually unwelcome guest. We didn't invite it, we're tired of feeding it, and we can't get it to leave. And people who do not suffer from chronic pain may from time to time experience pain, well, for them, it soon goes away. Their reality is that pain is an inconvenience. For those with chronic pain, its a never-ending intrusion, an endless interruption into the lives they would rather be leading.

Imagine never having a day when you don't have to be interrupted by some part of your body. You can never just focus on your play, your work, your enjoyment of the moment, because there is always this other thing, this monster under the bed. Go ahead, try to imagine it, I'll wait..... So, if you have never suffered from chronic pain, you probably couldn't achieve the requisite level of dark outlook, and all that attends thereof. It's OK, we know you couldn't do it. The fact is, we wish we couldn't do it, as well. But those of us who do suffer in this manner need to be patient with those who are free from such a constant encounter with pain. They really don't get it. It is what it is.

But the impact of chronic pain can affect those who live with us, work with us, and often have grown tired of playing with us, because our limitations are upsetting and a drag. I mean, lets be honest about this - handicapped people are not as much fun as people who are up for a marathon, or sky diving, or a serious set of tennis. Its not that they can't do these things, its just that they do them, well, slower, or more differently than we, the able-bodied, pain free folks would prefer. I get it, really, I do. We cramp your style.

But here's the irony, if you will. When the unfortunate happens to the presently able-bodied, its far more likely to derail them than it does with those of us who've been a long way down Hurting Road for a long time. We are better able, most of the time, to dealing with our situation, because we've had the practice. Hey, its the one advantage we have, so buck up. What makes you so upset - you didn't think you would be immune from the vagaries of the human condition, did you? Oh, I see. Well, that must be tough for you.

We who understand are left to wonder - why are you complaining so much? Get over it. Isn't that what you always say to us?


Friday, December 3, 2010

Prolo Update, Pain in the Neck, Herding Them Calves

Well, been away a bit, so not much to say about that, but waaaaay too much to say about everything else. The prolo seems to be holding on the right knee, thankfully. But my puppies have been going through a particularly rough patch of late. Think its time for new orthotics - been wearing these for a long time, and even thought they are made from old WWII tank iron, they could use a freshener. Maybe switch to titanium, eh?

The neck fusion may need a wee bit of revision - the bottom screw appears to have loosened (but they warned me of that possibility,) and they will have to go in from the back and wrap a wire around my neck. Sweet. Always thought of a garrote as something to be avoided, but what can ya do? Then again, so many people have commented about my loose screw that I wonder if I risk becoming a bobble-head.

The real issue for me currently (you really love hearing about my issues, right?) is my calves. They seem to be causing me more pain than I've ever noticed before. It makes for a feeling of weakness as I walk, and I am tending to take shorter steps as a result. It may unfortunately become a vicious circle: shorter steps mean less exercise, which leads to more atrophy, which leads to shorter steps - whew. I get tired just trying to explain it. Anyway, I keep doing research in hopes I can find even one clinician out there who has something to offer other than fusions, but little to report thus far. But stay tuned - miracles sometimes happen - the Giants, for example:-)

Well, here comes the holiday (weight-gain) season. Maybe it would help if I just kept my mouth closed? Nah - I just love pie.