April 2015 – charcot cha-cha

I WISH I’D GNOME….

That a fresh coat of paint was all that was needed to wipe away the years off one’s face!

A lot of us with Charcot Foot are doin’ a lot of time…NWB (non-weight-bearing) time, that is. Some of us are fortunate enough (though some may find it unfortunate!) to be able to continue at work/ in their jobs because perhaps they they have sit-down situations. But for those of us doing the time thing, we need to keep busy! So here is today’s project, which managed to keep me out of trouble for a few hours:

My mom likes gnomes, and any time we see one at a garage sale we take him home with us. They most always need a fresh coat of paint and this one was a sad little Christmas gnome, pale and faded from years in the North Pole. I could tell he was so over the Christmas thing, and so I felt he needed to be returned to a hearty Norwegian fellow, like all good gnomes should be. He regained a blue-eyed twinkle and is now enjoying his rosy cheeks and fiery red hair! Oh, I added some quilt design to his coat, since my mom loves quilting, and it makes him warmer, lol!

WALKER HANDLE DISCOMFORT BANNISHED WITH ITEM FROM THE DOLLAR STORE!

Ok, after months of experimentation, and huge calluses on the palms of my hands, (see my post: Of Hunched Shoulders and Callused Hands) I have finally found a cheap and reliable solution to walker handle discomfort!

I’d tried all different things to make the handle easier on my hands…from wrapping quilt batting around, to the foam tubing that is designed to go around pipes, even to wearing a pair of oven mitts! But nothing held up for extended periods of time. But today my mom brought home a pool noodle from the dollar store, and w o w, it worked magnificently! And at 5 feet long there is enough to last me a few weeks. (They tend to split after a few days, because the interior diameter of the noodle is not as wide as the circumference of the handle.) I cut off a 6-7 inch length, and then cut that in half. Then I cut along the length of each piece so I could slip it over the handles. It is admittedly a rather wide grip that you end up with, but it not only is very comfortable, it stays put without moving around, and the styrofoam seems extremely resistant to breaking down. Hallelujah! Go out and get yourself one! (And get outta the way, I’m a walkering!)

CHARCOT FOOT AND GIVING UP BAD HABITS

In previous posts, I have touched on the importance of giving up alcohol and smoking, so that our Charcot Foot can have a fighting chance at healing, as well as improving our overall health. Since both alcohol and smoking can have damaging effects to our existing peripheral neuropathy, it’s crucial that we don’t impair our healing, or set our feet up for further damage down the road. If you do either, or both, it comes down to a habit that we need to train ourselves not to want anymore. And as you can imagine, it is not easy! But it is definitely do-able and the rewards are many, though they may seem hard to outwardly notice… inwardly your body will be so thankful to you!

So where to start? Some will say that quitting smoking is ten times harder than giving up alcohol. And there are those who think the other way around. I had given up smoking once before, just before my nephew was born and enjoyed 6 full years cigarette free. Though it wasn’t an easy quit, I never cheated once. The habit did make it’s way back into my life, but as I said in an earlier posting, I only had 2-3 a day. Still, once I was diagnosed with Charcot Foot, I never had another cigarette. Did I yearn for one…..oh hell yeah, and bitterly so, on occasion. My bitterness had everything to do with not being allowed to have one, as opposed to yearning for nicotine, but overall, I’d say 90% of the time I never even give smoking a thought. It comes down to your reason for wanting to quit being so compelling that it over-rides your desire to satisfy the urges. Mind over matter.

As most of us know, smoking cigarettes and consuming alcohol regularly, are habits that we form. A lot of our association with the habit is related to the ritualistic nature of it. For instance, for a smoker, there is the ritual of how we take the cigarette out of the package , our style of lighting the cigarette, the way we hold it in our hand, and gesticulate while holding it…the action of blowing out the smoke…you see where I am going. It is the same with alcohol. We enjoy the sound of the cork coming out of the wine bottle, the sound of ice falling into your glass…the way we hold our wine glass, and how you jiggle your ice in your gin and tonic, etc. etc. The key factor that really helps to rid yourself of these habits, it’s to actually continue the habit, but most importantly, with a pseudo, imitation that represents the habit! That’s right, you are going to use your imagination to help you over the hump of cravings.

Below are some pointers on how to fake / replicate, your bad habits:

For cigarette replacement, try to find something about the same size and shape as a cigarette and use this to hold in your hand when you crave a cigarette. Even bring it up to your lips and pretend to inhale, and then exhale the imagined smoke. Crazy as this seems, I found it helped me enormously, and actually satisfied me till the craving passed. (just ignore the odd glances you might get!)

It is the same technique for alcohol. If you normally drink wine out of an elegant goblet, have some grape juice in the same goblet. At restaurants. if your friends are all having wine, don’t be shy to ask your waiter/waitress to serve you some soda in a wine glass, if she eyes you oddly, explain your are training yourself out of a bad habit.

If you usually drink mixed drinks in a lowball with ice, use the same glass with ice and a soda or ice tea. Jiggle your ice around like you do with alcohol, and let the psuedo-ness ease your craving.

When having a cigarette craving, try eating peanuts in the shell…it is a kind of chore, to work at getting the peanuts out and it helps by keeping your hands busy and your mind slightly occupied with the task.

If you used to step outside after meals for a cigarette, still step outside. Enjoy the fresh air and even go for a small stroll around the block. By the time you get back your craving will have actually subsided.

Have a friend or family member be your go-to support when you are feeling you might give in to your craving. Usually after 10 minutes of conversation, the temptation fades away.

Though certainly difficult to do, giving up bad habits is not impossible. Keeping our feet safe from potential danger has to now be one of our top priorities in life. So stay positive, fellow Charcoters and have a healthy 2015!

A LITTLE SOMETHING TO MAKE YOU LAUGH…

So, I was trying to get a bit of exercise and stretch my legs, and decided to walker out to the mailbox. On the way back, I spotted on the ground the prettiest little bug. A moth of some type, I supposed, , due to it’s triangular wing shape. It had dark blue wings with darker blue stripes, and it had a cute little red colored head. Well! I just had to get a picture of this undoubtedly rare insect! I called out to my mom to hurry and get the camera…but on her way she stopped for some conversation with my dad, so I was forced to go inside to get the camera myself. They wanted to know what all the hurry and fuss was about and I explained that I needed to get a photo of a rare insect before it took flight! Oh, and dad do you have a penny in your pocket, for scale? No….gasp, now I have to go round up a penny…I hope the bug is still there!! Dad started to head out there to look…STOP! Don’t go near it, I barked…sheesh, he’s going to scare it off! So I manage to beat him to the little fellow, gently placed the penny down…not too close! And took my photo. Here it is:

Now…I don’t know if it is obvious to you, looking at my photo, and it surely wasn’t too me, as I couldn’t actually get to close to my bug because I had to bend down from the walker, BUT…my dad finally was allowed to come in for a look at it and what does he say? “Why, this is no bug! It’s a tiny piece of one of your mom’s quilting fabrics! O.M.G.!! What?! Did I ever feel silly! But I really actually had a good laugh about it after awhile, after my massive disappointment faded away, that is! I tell you, that little bit of fabric really faked me out totally. Hoped this gave you a laugh!

CHARCOT FOOT AND ALCOHOL: JUST SAY NO!

Today I want to talk a little about the role alcohol can play in regards to Charcot Foot development. Although the majority of cases are related to having Diabetes and peripheral neuropathy, it is of interest to know that people with a history of alcohol abuse but who are not Diabetic, can develop neuropathy in their feet (called Alcoholic Neuropathy) which can lead to Charcot Foot. Interestingly, Diabetes was not always the leading cause of Charcot, in the past, diseases such as Leprosy and Syphilis were more likely the culprits. Thankfully with todays modern medicine those diseases are now relatively obscure. However now, with the percentage of the population being diagnosed with Diabetes growing steadily each year (a 30% increase in children getting type 2 since the turn of 21st century!) it looks like Diabetic peripheral neuropathy is going to be the number one cause. But wether a person has Diabetes or alcohol issues, having these factors alone doesn’t necessarily cause Charcot…(after all, only about 3-4% of Diabetes will get the condition), but having the neuropathy seems to be the main contributing factor. The connection with alcohol intrigues me and makes me wonder if Diabetics with neuropathy, and who imbibe liberally may well be doubling their chances of getting Charcot foot? I myself have always had a love affair with wine, and I now would not be surprised if that had a hand in my own progression into Charcot foot! As a Diabetic I have always been told to drink alcohol moderately, as it can take blood sugar to dangerous lows. Something I didn’t know, however, but have recently learned, is that research has shown that alcohol (and smoking, too) is damaging to existing neuropathy in our feet, and thus can make it worse. I don’t know if Charcot foot caused by Alcoholic Neuropathy is any different from Charcot caused by Diabetic Neuropathy, but knowing now that alcohol is indeed damaging to neuropathy…well, that in itself is enough to scare me off of it! It won’t be easy giving up something that I find pleasurable, but when it has such a negative effect on my health I’m going to have to think twice before sipping. That is the reason I quit smoking, because not only was it damaging to my body overall, it also can make peripheral neuropathy worse. In a future post I will go over some tips and tricks for abstaining alcohol and quitting smoking that have helped me in the past and perhaps they will be useful for you too. In the meantime, relax and have an iced tea (Not the Long Island kind!).

THE BEAUTIFUL SUBTLETIES OF A SEDENTARY LIFE

In one of my earlier posts, “The importance of Surroundings” I wrote about how crucial it is that your immediate environment be comfortable because you would be sitting in one place for most of the day while you are practicing your NWB (non-weight-bearing), as your foot tries to heal. Sitting in one location for most of the entire day is a concept that many of us just diagnosed with Charcot will have a hard time accepting. I know I did…I kicked (one-legged) and screamed at first because I just am so active I didn’t think I could survive staying put. It sounded so restrictive, so boring. But when I thought about it, I realized that it really isn’t just a disabled person’s dilemma…after all, many people in the working world sit long hours in a cubicle. I’ve managed to find a few ways to fill my time, and ironically, on some days it feels like I can’t fit in all the things I had planned to do!

Sitting in one place has taught me to appreciate the beauty just outside my window. Things I’d never have had the time to notice before are regularly surprising me. I’d have never known there was a squirrel in the neighborhood if I didn’t sit in one place all day, because he (she?) only comes around once every couple of weeks! And I’ve noticed a crow with half of his top beak missing. I call him “Broken Beak” (duh)….I felt sorry for him (her?) at first because I thought it would have survival troubles. But because of sitting in one place for long periods of time, (ta-da) I have had the joy of watching Broken Beak do more than survive, I’ve witness him thrive! I’ve seen him dozen of times now, picking up twigs for a nest, chasing off other crows from desired perches in the trees, and soaking some found tidbits in the bird bath. He’ll be allright. A few blue jays have decided to come ’round on the regular and say hello. The air is full of the sound of Hummingbirds chasing each other around with spring-fling flair. These are some of the beautiful subtleties of a sedentary life. With any luck, my foot will be surgically corrected and heal, and I’ll go back to a life that is less sedentary (though not from too much walking, that will be restricted!) For now though, for myself, and for the rest of us practicing our NWB (non-weight-bearing) try to enjoy all the subtle sights and sounds all around you that you may never have the time to notice again!

DON’T DELAY, IT’S TAX DAY!

photo: Cassandra, Charcotchacha

Just a reminder for all of you out there, don’t forget to do your taxes! Today is the deadline for filing. Many post offices will have personnel to accept your return till midnight tonight. Check with your local office for hours. Good luck!

Cassandra, Charcot chacha

CHARCOTCHACHA WELCOMES YOU!

This blogsite was made to share my journey with Charcot foot and to help others by providing inspiration as well as share my tips and tricks for daily living that I have learned along the way. I am not a physician nor am I dispensing medical advice, only my opinions on how to live with, or hopefully prevent Charcot Foot. Please see your physician or medical facility if you suspect you might have Charcot foot. Please check out my archives for articles on how to live and cope with Charcot Foot.

For medical information regarding Charcot foot, I recommend The Foot & Ankle Society’s page on Charcot at: http://www.aofas.org/footcaremd/conditions/diabetic-foot/Pages/Charcot-Arthropathy.aspxwww.aofas.org/footcaremd/conditions/diabetic-foot/Pages/Charcot-Arthropathy.aspx

And for information about Diabetes, visit www.diabetes.orgwww.diabetes.org which is the American Diabetes Association.

CHARCOT FOOT: NO LOITERING ALLOWED!

I am a painter, and I can distinctly remember all the long hours I stood in front of a canvas trying to madly finish my painting before a show’s deadline. I’d pull all nighters, sometimes two nights in a row, standing 10-12 hours. Had I knew then what I know now, i’d have been a lot kinder to my beloved feet. The point of this post is two-fold; I want to stress the importance of not standing on ones feet for long periods of time…for those of use who already have developed Charcot, and also for those that haven’t, as an aid to prevention. Standing for long periods of time has been proven to be bad for our feet, legs and circulation, but it is especially so if you suffer from peripheral neuropathy and hope to prevent Charcot Foot. I have no doubt that I unconsciously contributed to my own demise while working on my paintings. And if you’ve already developed a Charcot foot, and have had your reconstruction surgery, it is still important to never stand for long periods of time because of the possibility of having your bones collapse again. I know that if my surgery is successful, I will not be standing on my feet for long periods, or even short ones. I want my reconstructed foot to last as long as physically possible. The rest of my life would be nice! But we have to be realistic and realize we need to reduce the amount of walking, and the amount of standing to prevent Charcot, or re-charcot. If you do find yourself having to stand for long periods of time, please try to break it up with sit-down breaks if at all possible. Even dashing off to the bathroom is a break from being on your feet! So always keep this thought in the back of your mind: No loitering allowed!

LOGGING OUT FROM “WHO-YOU-WERE”

Though I strongly suspect that the change in one’s life and perspective after being diagnosed with Charcot foot is the same for others as it was for me, I can only vouch for how totally whack my life is now as compared to before. Like, where to start with comparing the list of “who I was” with the “who I am, now”? I guess we can start with the whole living-with-my-parents bit. After swiping a whopping 30 years of independence (from the “who-I-was” list), to giving it up for Mom constantly asking me if I am ok, and do I need anything…(“who-I-am-now”, not to be confused with when I was 5 years old, though the lines are a bit fuzzy). My parents are only trying to be as helpful as possible, of course, and only want a safe healing for me. But, I went from a rock goddess of independent living to just a costume of a super-hero, left crumpled in the corner, forgotten till the next Halloween or party. Well, at least that is certainly how it feels. Friends call and come over often in the beginning, but their lives of busyness and my life of not, slowly pulls apart the amounts and frequency of their visits. Not their fault, and not sure I even minded, because most days I don’t think I’m quite ready for prime-time, if you know what I mean! If you don’t know what I mean, well….it’s that it can be very easy to do the ‘ol “I’m not going anywhere today” Thing…the: “Who’s gonna see me, anyhow?? (n o b o d y)….soooo, why bother with make-up, and cute clothes, and all the accouterments, r i g h t? But, anyhow, I truly understand my friends reluctance to visit, and their wanting to just…hold their breath, like I myself am doing, actually, waiting for this whole thing to blow over and me to return to the “who-I-was”. In all honesty, I’m not too sure if that’s even possible, to go back to being the old me. First of all, I’ve had to box up some bad habits, like the occasional “whooo-hooo” drinking and smoking days, and place that box up in the attic for storage…probably forever. Actually, I wasn’t a heavy smoker… I’d only smoked 2-3 cigarettes a day, but since smoking effects your lower extremities in that it restricts blood flow, and has the double whammy of effecting your peripheral neuropathy too, I have made the decision to ditch them altogether so that my foot has a better chance of healing. My doctor said it was the best thing I could ever do for myself. He also mentioned that with Charcot foot, smoking could trigger inflammation or something, and it’s best not to take such a risk. Damn! I honestly won’t miss the smoking too much, (well, ok…a little bit!) though I surely will miss that woman puffing languidly on her cigarette, tossing back her head and dramatically exhaling smoke in film-noir elegance. Ok, ok….wake-up! Smoking is not chic, sexy or elegant…but you see, it is a perception of “who-I-was”, that will linger in my mind. Best to consider the new, non-smoking me to be a definite positive of the “who-I-am-now”!! (But only because I have to!)

But, let’s get back to living away from home. In my case, it’s staying with my parents, but it may be different for you. Some of us may be staying with friends, or perhaps even staying temporarily in a rehabilitation center or convalescent home. The reason for this is that in the early days of our diagnosis we are so caught off guard that we aren’t able to do a few basic things for ourselves. The major reason for me is that I could not navigate the stairs up to my condominium. And I didn’t have the ability to stand long enough in any one spot to be able to prepare meals (how to cook with both hands on a walker??!!) Learning to do daily things and get a rhythm to our routine takes a bit of time, but it does get better! My independent streak kicked in pretty early on, and now I actually don’t need help with anything. This will happen for you too, so don’t lose hope on being independent again someday!

Though our lives have surely changed with Charcot foot, and it seems at times we cannot connect our current reality with how our lives were in the past, you really are still the same person. Over time the “who-I-was” and the “who-I-am-now” merge back into one cohesive person, so hang in there, fellow Charcoters!