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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!

PHOTO’S OF THE WEEK!

My photo’s have nothing to do with Charcot Foot…just some images I snapped whilst sitting around waiting for my foot to heal. Some hummingbirds who managed to visit long enough to pose!

CHARCOT FOOT AND DOUBLE VISION!

Before you freak out worrying about eye damage and blurred vision due to Charcot Foot…S T O P! There is absolutely no connection!! I am only tying the two metaphorically: the awful choice I was faced with after my diagnosis. The yes or no? The up, or down? The ying or yang? The this or….that! Or, ok, ok…just gonna say it: AMPUTATE, or RECONSTRUCT ? ? ?

What a horrific choice! And as you can well imagine, I cannot begin to tell you how insane this one question made my mind! For the first two months after my diagnosis I was all tore up about which I should pick, as my foot doctor said I could go either way…my choice. Like, gasp! I’d hash the concept out with a few friends, and of course family, but no one, no one could ever really answer for me. How could they?! But to be quite honest, I wanted to just have the amputation, because then I would never. Ever. (get back together) with my messed up Charcot foot ever more! Gone, never to trouble me again! And to let you in on a secret, , you want to know what else I actually took into factor, favoring the amputation? (And I am sure this will seem really whack to some of you, yet totally sane to others!) With the amputation, and a prosthetic leg, I could still wear some bad-ass boots! There! I said it. And it’s true; fashion and vanity is going to be a concern for many of us facing Charcot Foot and it’s a hell of a struggle to come around to what is really important, which is what is best for your foot. Anyhow, my Doc sensed my ambiguity and sent me for a second opinion, and his verdict was that although an amputation certainly wasn’t “unreasonable” in my situation, he felt the foot could be salvaged with a reconstruction. I made one more appointment with an orthopedic surgeon, the one who would perform the amputation if I went that route. And he made up my mind for me then and there when he said that if it were him he would try to save the foot first. (By first he meant because there is such a high failure chance at the reconstruction, in my very severe case). Three doctors steering me towards the reconstruction, so whew, there surely was my answer!

And thus, my double vision was no longer an issue, my vision became one solid view, that of reconstruction. But there are worries and concerns with the reconstruction, of course. All of us facing this knows that there is no guarantee the surgery will be a success. And even if it is, there is a risk of the foot re-breaking again at some point in the future. There is a possibility that I will end up with the amputation anyhow. (Bet you guessed this is my worst-case-scenario!) But it is not all doom and gloom…there is an equal chance the surgery will be a success, and that is what I have to focus my thought and prayers on! And my doctors are right, it is better, much better to try and save my foot, if at all possible. And since they seem to think there is a possibility, that is what I am going with!

What about some of you Charcoter’s out there…did you have to face a hard decision too? How did you handle it, what helped you make your choice? Please share your story with us here on Charcot Chacha!

EASTER HIP-HOP, CHARCOT STYLE!!

Well, ok….no competing with the man who has hopping about down-pat!! One leg? No problem!

HAPPY EASTER to all and everyone who reads this blog, and may the rising of Jesus bring a rising of hope and courage to all!!

CHARCOT FOOT: COMING SOON TO A NEIGHBORHOOD NEAR YOU!

Heaven forbid I should toot my horn about being the next big thing! But I have to tell you, according to the evidence, it looks like Charcot Foot is going to become much more of a Diabetic condition than ever before, thanks to the fact that Diabetes is simply becoming much more prevalent in our modern culture.

According to the latest statistics, there are approximately 29.1 million Diabetics in America. But about 8 million of that number are folks who are unaware they are even Diabetic! The percentage of Diabetics who develop CHARCOT FOOT is around 3-6% of diagnosed, or conservatively, approximately 650,000 Americans! Where are all of you, and how can we get everyone HERE for regular support and sharing?!

Well, it is my dream to have a place on the internet where those suffering from Charcot Foot can share our fears, hopes, ideas and solutions! I am certainly not tech saavy in any way, and I don’t do much social media. Lord I have no clue how YOU came to read this, probably a stumble, no doubt. But if you did manage to read through any of the posts I have written on the subject, here on Charcot Chacha, please share them with your friends and family…get the word out! Because too many doctors, in too many emergency and urgent care centers are not even able to recognize Charcot Foot when your friend or loved one goes looking for answers. Please read my post “Charcot Foot: My Own Saga and Charcot Awareness” and come to know the symptoms and make sure all of your friends and family who have Diabetes (and especially who have peripheral neuropathy in their feet) are aware of the signs and symptoms. If caught early Charcot Foot can be managed without surgery, or loss of limb! Too late for me, but this does not stop me from wanting to get the word out about AWARENESS!!!!

And please know too, that worldwide, not all Charcoters are as lucky as some others. I have come across a few personal accounts of Charcot across the internet, and the U.S.A. looks to be the leading country for forward thinking doctors regarding Charcot Foot. But please pray for those in all other countries where Doctors are not skilled or educated in reconstruction, where amputation is the only tool available, where thousands suffer without proper care. Thank you.

OF HUNCHED SHOULDERS AND CRACKED PALMS.

Sitting all day definitely has it’s drawbacks (though no doubt is certainly someone’s lifetime dream!) And sitting in a wheelchair whose armrests are just slightly too high can double your dilemma. Since I have been ordered to not put any weight on my left foot (called NWB: non-weight-bearing) while I await my reconstructive surgery to my Charcot foot, I have opted to use a “transport” wheelchair for my main sit-down, because it allows me to zip all around town (ok, ok…the house). I use the chair, and a walker to get about…but I haven’t been able to figure out just which one of the two is causing my shoulders to hurt so badly that I get crappy sleep at night. And reaching up for something in the refrigerator? Get out! Super-painful. I really think it’s because of those too-high arm rests on the chair, it causes me to hunch up my shoulders all day. I have to tell myself “drop-‘em!” all day long in my half baked efforts to counter the situation. I suppose it could be all the work I’m making my arms do when I use the walker…but one thing the walker is for sure guilty of is my cracked, callused palms! I mean, like, ACK! Check out the photo (sorry for the “ICK” factor!)

I have been applying this horsey-hoof gunk my mom swears will cure up my skin, but it A. stinks, and B. is greasier than Saturday morning at the diner! I can’t do anything for like, 30 minutes, or I will get the greasy gunk all over everything! I have been trying to do some daily arm and shoulder stretches to ease the pains, but it hasn’t really worked. Anyone out there have any suggestions? In the meantime, I guess I will just paint my nails some god-awful wackiness to just bring a smile!

SAYING GOODBYE TO BEAUTIFUL, LOVELY SHOES!

I want to say first off, that if I am blessed and fortunate enough to be able to walk again after my reconstruction surgery, I will love my black orthopedic shoes and find them to be, no doubt, the most beautiful shoe in the world! That’s being quite optimistic, I know, but in truth to be even able to wear a shoe and walk in it sounds divine.

But sadly, I know I must let go of the past, a past full of cute strappy sandals, and sexy boots of all heights and heels. And, (major sniff!) flip.flops. God how I loved my flip flops! I would often proclaim to myself that if it weren’t for winter time (and cold feet!) and work (have to wear shoes!) I would live my life in flip-flops. Sigh. The doc says never again. I might add, that flip flops are probably a podiatrists least favored shoe for our feet, by the way. Zero support. Now…it will be all about support. Arch support, plantar support, ankle support. My podiatrist says I will likely need to wear a brace the rest of my life. Won’t that look cute in the summertime with all those cute summer dresses! Sigh. Well you see…I just have to give up my cynicism over it, and that kind of thinking. My new, going forward thinking (and for you too), will be learning to embrace how damn lucky I’ll be, should I even be able to walk ever again! And no, there will be no more uphill hikes, or 2-3 mile beach walks. It will be: walk to the kitchen, walk to the car, walk to store entrance, etc. But, being able to stand on both feet to take a shower, stand on both feet to do the dishes. Stand on both feet to get dressed, etc. It’s a personal journey all of us with Charcot are faced, and it’s not a fun ride. I assure you I will not look forward to enviously eyeing other women’s shoes! And boxing up and donating all my own beloved shoes, boots and sandals is going to be good for a tear or twenty. Well my fellow Charcoters, I guess the best thing to do is to look at the positives, not the negatives, and perhaps we will, in time, get over our shoe mourning!

Oh, and P.S…….

Do not even think for a minute that this is a just a feminine woe, NAY! I have known at least 4 or 5 men who personally owned over 100 pairs of shoes! For one fellow it was fancy athletics, mostly of the famous kind, and another had a thing for dress shoes. Yet still another owned dozens and dozens of work boots. So, having to give up all those style options for one. ugly. but damn good orthopedic is indeed going to be a challenge we must all face! Stay strong, Charcoters!

CHARCOT FOOT: MY OWN SAGA, AND CHARCOT AWARENESS

It is extremely important that every person with Diabetes is aware of what Charcot foot is, and the potential for susceptibility to the condition. I have had diabetes for 10 years (that I know of!) and I have never heard of Charcot. All around me, when I explain my condition I am met with the same thing: no one has ever heard of it! I have had my neuropathy in my feet for years, and was under the impression that all I had to worry about was to be sure not to cut my foot, as it might lead to an infection that in turn could lead to amputation. No cuts, no worries! Had I had any clue that my bones would go soft and break, at will, I certainly would have been more pro-active and perhaps not be in such a severe state of the condition.

It doesn’t help matters much that the medical field in general, are not aware enough of Charcot to make effective diagnostic decisions. I have come across a few personal accounts around the internet, and my own experience too, to realize that most of us are misdiagnosed several times over before Charcot foot becomes a reality. I was whisked off for unltra-sounds looking for blood clots, I was given numerous vascular exams. I was told I had some kind of trauma to the foot and was suffering from “sympathetic regional complex syndrome”, or something of that sort. Was told I had Lymphodema. One doctor even acknowledged I’d suffered some fractures, but that they surely were healed now and since I wasn’t in any pain and was able to perform my job (which included walking about 10 miles a day!) that I should just carry on. Which is what I did. Of course, having no pain in the foot is because those of us with severe neuropathy don’t have any sensation/ feeling in the foot. It becomes a rather vicious cycle, a catch-22. Your bones break, you don’t know it, you keep walking, and the bones break some more. And more. And more till you are literally walking on a bone that is not where it is supposed to be. That is what lead to my ulcer/ wound.

One doctor kept asking me “And you don’t remember any trauma to the foot?” and I was wracked with guilt because I could not remember anything traumatic. Did I have too much to drink one day and try to imitate Bruce Lee, and break a cinder block with my foot…or something?! I mean, there was no explanation to my broken bones, and I felt horrible about it. I was very much relieved though, when I learned after my Charcot diagnosis that no trauma at all is needed for the bones to break. Often times they just simply collapse on their own. Not to creep anyone out, but I remember in my early stages of my condition, the bones in my feet moving about and making little popping, crunching sounds/ sensations. On a walk with my parents I remember telling them my foot kept crunching, and was it even possible I could have a broken foot and not know it?? Of course they told me that was impossible! I remember tugging up a pair of beloved ankle boots (that really didn’t want to fit anymore due to the swollen size of my foot) and my foot protesting in return with a symphony of bones popping around inside my foot. ACK! Of course I wore them anyway.

What really is sad is that without any knowledge, without any doctors having a clue what was wrong with me…I walked my poor Charcot foot to death!! My job had me on my feet nearly the entire day, doing expediting in a warehouse the size of a football stadium. On a bare, poured concrete floor. Lot’s of times friends would joke about how I should wear a ped-o-meter to work so I could clock how many miles I’d walk in a day. We guesstimated it to be about 10 miles! On top of that, I was a fairly active person. I bought my own kayak and would haul it out into the bay several times a week. I loved to ride my beach cruiser bicycle. And I was always taking walks either 2-3 miles in a park or shorter uphill mountain hikes. Ironically I took such a hike just days before my ulcer and my hospital stay made it’s appearance!! And the entire time my foot was swollen to twice it’s size. I’d long learned to just live with that, and that was a huge mistake of catastrophic proportions! Now I know, and I want every other Diabetic to know, that the swelling in the feet is the number one sign/ symptom of Charcot foot. Do not ignore swelling in your feet! Another sign is the skin on your feet feeling much warmer than your other foot. And any signs of redness can also be another indicator of Charcot foot. So please always keep an eye on your feet for these three symptoms and don’t hesitate to have your foot looked at by a podiatrist. Of all doctors, podiatrists are the most likely to understand illness and disease to the feet, and you stand a better chance of being properly diagnosed. But whatever doctor, please have it looked into if you suspect you may have Charcot foot!