Moving Right Along

Two Good Goops

Somebody came here today looking for "amputee lubricant."  So glad you asked!

When you are first fit with a suction socket, you will need to use some kind of goo to ease entry of your stump into first the "check" socket and then your prosthetic's socket, both of which will have been cast to fit your stump intimately.  I have hypersensitive skin which is allergic to at least one ingredient in almost every commonly recommended product of this type, especially alcohol in any form whatsoever, so I had to go looking for alternatives.  Fortunately, my dear friend Karen was with me the day I was first cast for a check socket, and she had lived in the town where my prosthetist's office is, so she knew where to take me: to the natural grocery store, A Market.  This is a small store with friendly, helpful staff and a deep selection of skin care products, and here I found the perfect product for my needs, Burt's Bees Milk & Honey Body Lotion. 

This product is very slippery, with just a little bit going a long way.  In fact, it's a bit more slippery than is quite ideal for beginners, so if you use too much you might find yourself sloshing around in your socket and not staying in quite as well as you'd like, and that can be daunting and a little dangerous.  Too much liquid in the socket even for experienced wearers can also cause the dreaded socket fart.  This particular fluid also sometimes leaves a yellow stain on your skin, which can make you appear slightly jaundiced, and stains white cloth yellow, which can make your panties look like you peed yourself.  However, it smells lovely, like coconut, oranges, and honey, and the staining is not permanent.  Just wash your hands.  Or, for fabric, apply a little liquid detergent (I like Seventh Generation, myself) directly to the stain, let it sit for a bit, and then wash, and it should come right out of any natural fiber, even in cold water.  The best news of all is, of course, that you won't have to use it forever.  Putting the socket on gets easier with time, and you will develop better techniques than greasing up.  Honest, you will.

One thing that may not ease up, though, is chafing.  And while this lotion is a lovely moisturizer which I've also found quite helpful against dry skin in the depths of winter, it really can't form any kind of protective barrier between skin and anything tougher than a gust of wind.  You will need to find other tools to combat this, and like me, you may find that you will need a variety of options, something for every kind of circumstance.  I have my girdle for the winter.  For spring and fall, and on and off throughout the summer, I have high tech plastic bandages.  For much of this summer, though, I've relied on something else, something new, at least to me:  BodyGlide.

My boyfriend found this stuff at EMS.  Knowing of my constant, chronic difficulties with chafing and pinching, he picked me up a tube so I could try it out.  (What a mensch, eh?)  It works great!  It's completely natural, with no animal or petroleum products and no alcohol or scent.  It's just a couple different forms of vegetable-based fat and some glycerine, plus aloe and Vitamin E.  However, it has a smooth, waxy texture which creates a barrier -- even when you sweat.  It has no perceptible weight or thickness.  You can wear it in hot weather without consequence.  It takes hours to sweat/wear it all off, and once you have, it's easy to reapply.  You can also apply it right to dampish skin straight out of the shower, whereas I have to blow-dry my crotch and upper thighs before I can get fresh bandages to stick.

Sometimes I still have to apply a bandage over a spot at the top of my inner thigh which just wears out from constant rubbing and pressure.  This is the result of putting weight on a part of my skin that was never meant to bear weight and will never callous sufficiently to protect itself, and so it happens even using BodyGlide all day for several days in a row, with nothing else between me and the plastic socket.  However, um, in case you missed that, I only get cripplingly chafed after wearing nothing but BodyGlide between my skin and my prosthetic all day, several days in a row -- not several minutes or several hours, but several days -- provided, of course, I've been wearing shorts and not big, thick pants with vicious pinching seams.  Against that kind of assault, I still need girdles and bandages if I'm planning to walk any distance at all.

I have found, as you might, that having multiple strategies for each problem is the best of all possible circumstances.  If one thing doesn't work in one situation, you can reach for something else.  Almost two years out from my amputation, all the things mentioned in this post -- Burt's Bees Milk & Honey Body Lotion, high tech bandages,  a good girdle, and BodyGlide -- are in my tool kit and get plenty of use.  I recommend them all, the first for getting into a check socket or a new socket (and for nourishing sensitive dry skin pretty much everywhere on your body), and the other three to combat chafing year-round and help you live a life as active as you desire.

Financial Disclosure

Over a month ago, I read this article at one of my favorite blogs, Stay Free! Daily:

http://blog.stayfreemagazine.org/2005/07/blog_analysis.html

I love this post, especially the last paragraph (which is, uh, probably not suitable for children, BTW), but sort of tangentially it made me worry a little about what this blog, with its long lists of products and services I like on the righthand side of the page and its shorter list of totally unrelated blogs that I like on the left, plus my occasional raving about different retailers or things like specific brands of coffee and shoes, might look like to people who don't know me.  In order to reassure you of this site's strictly personal subjectivity, there are a couple of things I'd like you to notice about it. 

There is no sponsor.  There are no ads. 

There will never be either.*

Though I naturally hope that all our efforts to communicate our experiences as amputees will result in some small part in ever more smart, brave, compassionate humans living happy, loving, meaningful lives, not to mention a constantly improving range of available products and services for amputees around the world -- whether it's because suits and 'bots have surreptitiously gleaned data from any of these efforts or not -- this particular effort is neither research nor advertising project, just the proverbial "labor" of love.  (I don't really put enough consistent effort into this to call it labor of any kind, really, but that's how the expression goes, so...)  I create and maintain this blog on my own time, from my own studio in my own home, not while I am at work anywhere else.  I pay the $8.95 monthly fee to TypePad for hosting out of my own pocket, and no thanks, I don't want help with that.  I don't even want a tax break. 

This project is about being honest with each other about what works and what doesn't, trying to share real resources, ideas, and experiences of real amputees who are getting on with their lives -- or trying to.  Everything I rave about here is something I genuinely love.  Everything I rant about is something I genuinely loathe.  If your experience with any given product, technique, service provider, etc., that I mention here matches or contradicts mine -- or if you simply have other genuine ideas, resources and experiences you'd like to throw in the mix -- I repeat what I have said before, that I hope you will share freely.    My experience as an amputee is limited to just that -- my experience.   Kinda limited in scope and potential usefulness, right?  Especially since there are so many of us, with so many unique stories.

Now that TypePad has added in the option, I have begun and will continue to screen all comments and trackbacks.  I try to give people the benefit of a doubt, but I will not allow spam, unintelligible nonsense, abuse, or creepiness, period.  If you've got something real to say about this whole amputation trip, though, something constructive, useful and true, I want to hear it, and I want to share it with others.   You won't have to worry about stepping on anybody's toes.  I've only got five, and they're the only ones here.

I hope this is clear.  If you have any questions, though, please fire away.

(Whew.  Glad to get that off my chest.  On to better topics.)

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* 10-01-05:  Uh...  There will never be sponsors or ads -- except on results pages if you use the free search engine for this site provided by FreeFind.com.  There's a lot of information on this site, and I thought I'd better put in a search box, but I can't afford to buy an ad-free one just this minute.  Of course,  I do not choose what shows up at the top of the search results; it's totally third-party-robot-run.  Next paycheck, I will buy an annual ad-free subscription to FreeFind, and there will be no more ads, period.  Sorry for the temporary obnoxity.

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09-24-07:  Oh, okay.  I put a link to my Etsy store, with pictures, in the left sidebar.  Sorry; they made it so easy, I just couldn't resist.  Besides, a girl's gotta eat, and an art girl's gotta sell art to eat.  Besides, it's better than an Amazon store because I actually made everything in it, and almost all the money you spend at my store goes directly to me.  I still refuse to accept third-party advertising or outside sponsorship for this blog, though, and my plan is for that to always be so.

Also, you may notice that I never did take the ads off the FreeFind results pages.  Sorry; it costs more than I have to do that.  Oh, well.  Welcome to my own petty heck of situational ethics.

On Confidence and Crutches

Two queries have brought people to this site in the last couple of days:

1.  "How to have confidence of not falling after amputation," and
2.  "Learning how to walk on crutches after having lower leg amputated."

Good questions, both of them -- and kind of related.  I'll answer the second one first.  Just note one thing: how much of your leg came off has no bearing on the answers to these questions.

If you are lucky enough to have access to physical therapy, use it.  You may start off with a portable wheelchair and a walker (and to give yourself the maximum number of options, you should ask for both before you leave the hospital, as well as a sturdy pair of aluminum crutches; your case worker will order them for you and bill them to your insurance, if you have any).  When you are ready, though -- and it might be immediately or it might be awhile, depending on your overall health and the presence of other complications -- your physical therapist (PT) will be more than happy to help you learn to use crutches on every kind of surface and even on stairs.  Your competent and useful PT will also be happy to work with your friends and family to teach them how to help and protect you while you are still learning or in dangerous situations where you may require help.  Using everything from special straps to the waistband of your pants, the people around you can help you over the scary bits until you don't need them to anymore.

My PT showed my boyfriend, for example, how to support me from behind over stairs and rough or slippery spots by grabbing onto my waistband.  There was one day in New Hampshire during the first deep winter after my then-recent amputation when we went out to eat after visiting my prosthetist.  The snow had melted and refrozen, thick, hard, slippery, and uneven, up to and over the curb.  Still, I'd been on crutches for a few months and wanted to try to navigate this treacherous terrain.  I made it up onto the curb and into the restaurant.  However, once we were leaving it proved too difficult for me to go back, off the curb, over the slick and sloping  ice mass and down to the car door.  I felt myself start to fall, face forward, very fast toward that rock-hard ice.  And then, a miracle:  I was flying!  No part of me was touching the ground, and yet, I was not traveling downward!  How could this be?  I'll tell you how:  My boyfriend was paying attention, holding onto my waistband, and right when he saw me start to go off balance, he hoisted me off the ground, using his other hand to stabilize my torso much like the man in a figure skating pair stabilizes his flying partner.  He set me back down on solid ground to wait while he went to get my wheelchair.  How did he know what to do?  Well, heck yeah he's a smart cookie, and years of tai chi practice have taught him how to brace himself.  But also, he had bothered to ask my PT to teach him how to help me in just this kind of situation and many others.

So the answer to the second question, learning how to walk on crutches, is a three-parter:

1.  Get instruction.
2.  Get instruction for the people around you.
3.  Get out there and use the dang things.

(Oh, and it doesn't hurt to have a back-up plan.  Get out there and use the dang things, but make sure you've brought something else along, just in case.)

As it happens, number three here is also the biggest part of the answer to the first question, how to have confidence around the issue of falling: 

Get out there.  Get out there and try stuff.  Go as slowly as you have to.  Go as carefully as you must.  But get up, get out, and try new stuff all the time, at least one new thing -- and it can be a tiny thing -- every single day.  You will be terrified at first; almost everybody is.  However, a basic fact of life is that the only antidote to fear is knowledge.  Knowledge in this case translates as experience. 

You will only get experience by getting off your backside and trying stuff out.  Learn how to fall so that you will know that you will be safe if your experiments don't work out as you might hope; that's a huge part of the experience you will need.  Use all the help learning that you can get -- from doctors, from PTs, from OTs, from prosthetists, from nurses, from other amputees...  Every little thing you can glean is useful.  But ultimately the bottom line for confidence is experience, and experience is something you will have to be brave enough to give yourself.  Sorry, that's the plain truth.

A lot of people have a hard time finding the courage to move forward after a brutal physical experience such as traumatic amputation.  This is normal.  One answer to this problem is to find a goal.   There's got to be something you want to do which is more important to you than holding onto your fear.

Being too depressed and/or frightened at first to fix upon a goal is also quite common, but if it goes on for too long you may wish to consider psychiatric assistance.  But also, remember:  you don't need to be shooting for some TV movie of the week kind of experience.  My first goal after amputation was to get all the tubes and lines off of me so I could go to the bathroom to toilet and bathe myself.  Not glamourous at all, but oh so satisfying when I attained it!  Start small like this, and work your way upward and outward, back into your full life one little goal at a time.

Maybe you are a parent and you want to be able to walk and hold your child in your arms at the same time.  Maybe you are an athlete who wants to return to his or her sport.  Maybe, like me, you just want to have an ordinary, boring life.  And maybe for right now you just want to figure out how to cross a room with a cup of hot coffee (incidentally, try a thermos).  It doesn't have to be a noble goal, and it should not be one you devise for the sake of pleasing someone else, or your dedication may be in danger of crumbling under immense artificial pressure.  Remember, the people who love you want you to be happy and well.  They aren't really that picky about what else you accomplish; those specifics are totally up to you, though they will be eager to help you achieve them.

When you have a goal, it gives you a reason to try.  When you try, you learn.  The more you learn, the less fear you will keep.  Knowledge really is power; experience is confidence.   Think of something you want to see just past your current horizon, and then just start stepping -- and stumbling, a little -- toward it.  Strength will come, even if you fall sometimes along the way.

The One About the Three-Legged Pig

Okay, I've been way too busy to post for the last month or so, and part of why is that it's summer (more on that later, when I get the film back).  Another part is just that I'm messing around with a bunch of different stuff (bicycling, velcro, new chafing solutions, etc.) and don't have a complete story to tell you yet about any of it.

Meanwhile, though, I participated in the Chubby Girl Brigade's recent Blogathon to benefit Heifer International.  Participating meant joining in the delirium of a 24-hour chat in order to give Jerilyn stuff to post (and help keep her awake), though my schedule only permitted me to do so for a couple of hours -- and frankly, I was only able to do that much because of a very unscheduled bout of insomnia.  Somewhere in those hours, though, I told this joke.

I first heard this joke when my boyfriend told it to me ten years ago, when we were first courting, long before I became an amputee but while I was still a militant vegan.  I went out with him anyway.  Draw your own conclusions.

Stop me if you've heard this...

A farmer walks into a bar with a three-legged pig.  The bartender asks, "How come that pig's missing a leg?"

"Well," says the farmer, "there was a big fire.  My house burned right down to the ground.  My family and I all would have burned up with it if this pig hadn't come into the flaming, smoke-filled house and dragged each of us out, one by one."

"Wow," says the bartender, respectfully.

"Yep," says the farmer, "and you just don't eat a pig like that all at once."